CHILDREN AND YOUNG PEOPLE'S

CHILDREN AND YOUNG PEOPLE’SSPECIALISED SERVICES PROJECT (CYPSSP)

All Wales Anaesthesia and Surgery Standards for Children and Young People’s Specialised Healthcare Services

Consultation Document

2009

Foreword

Edwina Hart, AM, MBE, Minister for Health and Social Services

The best investment we can make in the future of Wales is ensuring that high quality and equitable services are provided for our children and young people. The Welsh Assembly Government is committed to ensuring these services are in place.

This document is one of a series, which address the specific needs of the children and young people who require specialised healthcare services. This series has been designed to compliment the National Service Framework for children, young people and maternity services in Wales.

I encourage you to participate in this consultation to help us ensure that these standards have the utmost impact on the health and wellbeing of our children and young people with specialised healthcare needs.

Edwina Hart AM, MBEMinister for Health and Social Services

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CONSULTATION QUESTIONS

1. Please state your name, title and place of work (please also state if you want your name withheld from the publication of the results of this consultation).

2. Some of the key actions within this document have been identified for delivery within 1 year of publication of the standards. Implementation of these key actions has been estimated to be low or no-cost because they are organisational issues or are already being planned for, or implemented, in many areas.Do you agree that the flagged early implementation key actions are the right ones to prioritise for early delivery? Please state which of the flagged key actions you do not believe can be delivered by this deadline and why. Please also state if there are any other key actions which you believe could be delivered by the end of the first year following publication.

3. Each key action has the organisations which are responsible for their delivery clearly identified.Are there any key actions which you feel that the organisation you work for is not responsible for delivering? Are there any key actions which you feel your organisation or another organisation could contribute to delivering but has not been listed next to a key action?

4. When you read both the universal and service specific documents, please consider the following;Are there are important universal or service specific NEEDS of children, young people and their families which you feel have not been addressed by the key actions in these standards document?

5. Every attempt has been made to make each key action clear, specific and measurable to allow for easier audit.Are there any key actions which you feel do not meet the above criteria? If so, can you suggest a form of wording that would improve the key action?

6. These documents are aimed at service commissioners and providers, however we have developed the documents with the help of children, young people and their families and therefore hope that they are easily understandable. We have identified some key words in the glossary of each standards document. Are there any terms or phrases used within this document that have not been included in the glossary, but which you feel require definition?

7. Can you foresee any barriers to the implementation of these standards? If so, are there any actions which the Welsh Assembly Government should take to help overcome these barriers?

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8. From those key actions which are developmental key actions please select the three that you feel will have the greatest impact on the specialised services for children and young people or are essential to develop and rank them in order of priority.

9. Do you have any other comments that you would like to make about these document?

The consultation period will come to an end of the 1st May 2009. Please send all comments to the address below by this date.

Michelle Grey

Children’s Health and Wellbeing Branch

Health and Social Services

Welsh Assembly Government

2nd Floor

Cathays Park

Cardiff

CF10 3NQ

or to

[email protected]

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mailto:[email protected]

Children and Young People’s Specialised Services

Introduction

In 2002, the Specialised Health Service Commission for Wales undertook a review of specialised healthcare services for the children and young people of Wales, which identified that these services were being delivered in an ad hoc and fragmented way.1, 2 Following this review, the Minister for Health and Social Services announced that Managed Clinical Networks (MCNs) would be developed to deliver specialised healthcare services for children and young people.3

The Children and Young People’s Specialised Services Project (CYPSSP) was established by the Welsh Assembly Government (WAG) to take this work forward. The project’s remit was to:

Develop high quality, equitable and sustainable specialised children’s health services across Wales based upon the best available evidence and with

children and their carers at the centre of all planning and provision.

This would be achieved by the following aims:

To develop service specific standards for specialised healthcare services for the children and young people of Wales

To enable equity of access through effective managed clinical network models for all children and young people in Wales requiring specialised services.

The agreed specialised services for the project are:

Paediatric Critical Care (standards already published) Neonatal Services Paediatric Neurosciences

- Neurosurgery - Neurology - Neurodisability

Paediatric Oncology Paediatric Palliative Care Paediatric Specialist Anaesthetics and Surgery

- Anaesthetics- General Surgery - Trauma and Orthopaedics- Ear, Nose and Throat- Ophthalmology- Plastic Surgery - Burns- Maxillofacial - Cleft Lip and Palate

Paediatric Nephrology

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Paediatric Cardiology and Congenital Cardiac Services (including access to Cardiac Surgery)

Paediatric Endocrinology Paediatric Gastroenterology, Hepatology and Nutrition Paediatric Inherited Metabolic Disease Paediatric Respiratory

The Standards Documents

There is a standards document for each particular specialised service containing key actions (KAs) related to that specific service. There is also a Universal Standards document, which applies to all specialised services included in the project. The standards documents are written from an All Wales perspective and apply to all children and young people with that particular health need, wherever they live in Wales.4, 5, 6

These standards should also be read and used in conjunction with the National Service Framework for Children, Young People and Maternity Services in Wales (Children’s NSF)7, in particular Chapter 2, “Key actions universal to all children” which is relevant to all services and all children and young people.

The standards and key actions within the CYPSSP documents apply to all children and young people accessing the specific specialised service who are 0-18 years of age. However, key actions that relate to transition apply to all young people who may require ongoing services beyond this age range. The age for transition to adult services must be flexible to ensure that all young people are treated by the most appropriate professional and in the most appropriate setting. This will depend on the young person's mental, emotional and physical development.

Purpose of Standards

The standards and their key actions have been developed to provide a basis for service commissioners and providers to plan and deliver effective services.8, 9 They are to be used to benchmark current services and inform the development of future services to meet the specialised health needs of children and young people across Wales.10

Developing the Standards

The standards for each service have been developed by an External Working Group (EWG) representative of key stakeholders. Membership details are included as Appendix One in each of the service specific standards documents.

The contribution made by EWG members is greatly appreciated. We are particularly grateful to the children, young people and parents who have been involved in the development of this work.11,12

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The standards have been Quality Assured by a Project Steering Group (SG) comprised of strategic stakeholders, details of which are included as Appendix Two in the service specific documents.

The standards have also been mapped against the Welsh Assembly Government’s Healthcare Standards.13 The Healthcare Standards for Wales set out the Welsh Assembly Government’s common framework of healthcare standards to support the NHS and partner organisations in providing effective, timely and quality services across all healthcare settings. There are thirty-two Healthcare Standards covering four domains; The Patient Experience, Clinical Outcomes, Healthcare Governance and Public Health. These are designed to deliver the improved levels of care and treatment the people of Wales have a right to reasonably expect. The standards will be taken into account by those providing healthcare, regardless of the setting. Examples of how the healthcare standards relate to the CYPSSP standards are referenced at the end of each section.

The Healthcare Standards are used by Healthcare Inspectorate Wales (HIW) as part of its process for assessing the quality, safety and effectiveness of healthcare providers and commissioners across Wales.

Since the CYPSSP commenced in 2003, three project managers have successfully managed and facilitated the development of the standards documents. We would like to extend our grateful thanks to all of the Project Managers, namely Eiri Jones, Sian Thomas and Mary Francis for their contribution to this work.

Delivering the Standards

Some of the key actions can be delivered within a year; however due to workforce and financial constraints others will take a number of years to achieve. Thus each key action has a timescale for delivery between one and ten years.

Every attempt has been made to ensure that the key actions are clear and measurable. However when terms that cannot be measured such as ‘timely’ and ‘appropriate’ have been used it will be for the specific MCN to agree on the acceptable definition of the term. This will allow each standard and key action to reflect the particular needs of each individual specialist service. Whenever ‘children’ are referred to in this document it should be accepted that this also includes young people. Reference to ‘parents’ includes mothers, fathers, carers and other adults with responsibility for caring for the children.

The standards within this document are based on the current configuration of the NHS. Following the consultation of the ‘Proposal to Change the Structure of the NHS in Wales' 14 issued by the Welsh Assembly Government in April 2008, the Minister for Health and Social Services issued statements on the 16th July, 30th September and 1st November 2008 outlining plans for the future configuration of the NHS in Wales. These plans will impact on the key actions

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within this document, specifically the organisations responsible for their delivery. Therefore, it should be understood that where the current responsibilities are transferred to another organisation, they will then become responsible for delivery of the key actions. These standards will continue to be enforceable subject to any changes to the structure of the NHS in Wales.

Monitoring the Standards

Standards will be monitored and audited annually as part of the MCN arrangements and will include comprehensive audit of training, practice and compliance with pathways, protocols and agreed outcomes.

Managed Clinical Networks (MCNs)

Children and young people accessing specialist services in Wales inevitably experience different patterns of care depending on the geography and population characteristics that impact on service provision in their locality. However it is crucial that although the pattern of care provided may differ, the standard of care provided does not. Developing MCNs is a way of ensuring that all Welsh children and young people receive equitable and high quality specialised services wherever they live in Wales.

MCNs can be defined as:

“Linked groups of health professionals from primary, secondary and/or specialist care, working in a co-ordinated manner, unconstrained by existing organisational boundaries, to ensure equitable provision of high quality and

clinically effective services.” 15

Through the formal establishment of MCNs, children and young people in Wales requiring specialised healthcare will access services in accordance with the following principle:

Age appropriate, safe and effective (high quality) care delivered as locally as possible, rather than local care delivered as safely and effectively as

possible.16

An MCN is comprised of a number of disciplines working together in a co-ordinated, non-hierarchical manner, unconstrained by professional and organisational boundaries. As a result of this collaborative mechanism, MCNs aim to facilitate and promote equitable, quality services through the provision of seamless care.

Many disciplines already work in an informal professional network. However this is not the case across all professions and health sectors. MCNs provide a co-ordinated and managed structure, integral to which are agreed protocols and pathways of care, clinical audit, training and continuing professional development.

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It should be acknowledged that a child or young person might need to access more than one of the CYPSSP speciality services. The MCN framework and structures for each speciality should ensure flexibility to work together to meet the needs of the child and the delivery of appropriate seamless care.

Dental Care

Dental care is a service that has not been addressed separately. It is important to recognise that oral healthcare is a significant consideration for all children and young people and, because of their medical conditions, many of the children and young people requiring specialised healthcare services may:

be at higher risk of oral disease and oral complications be at higher risk when treated for oral disease e.g. children with respiratory

disorders requiring general anaesthetics and children who have had cardiac surgery

have particular problems that make the management of their dental treatment difficult, e.g. there may be associated learning disabilities.

Prevention of oral and dental disease is therefore highly desirable for this group of children and thus preventative oral healthcare advice should be part of every child’s overall care plan so that families and carers are well informed as to the specific risks for each child. Specific oral assessment and care should also be available where appropriate.

To facilitate this it is essential that the dental team is considered an integral part of the multidisciplinary approach advocated throughout this project and there should be a named dentist with specialised skills and knowledge in the oral healthcare of children e.g. a Specialist in Paediatric Dentistry linked to each large District General Hospital to provide support and advice to the broader teams and ensure referral of children for appropriate healthcare.

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Anaesthetic and Surgery Services for the Children and Young People of Wales

This document applies to all services providing surgical services for children and young people in Wales. There are thirteen standards within the document. Standards one to six are general and apply to all surgical services, whilst the remaining standards are service specific. All the service specific standards must be read in conjunction with standards 1-6, along with the Universal Standards document 17 and National Service Framework for Children, Young People and Maternity Services.7

1. Anaesthetic and General Surgery: Environment and Facilities2. Anaesthetic Care for Elective and Emergency Surgery 3. Elective General Surgery 4. Emergency General Surgery 5. Specialist Paediatric Surgery6. Anaesthetic and Surgery: Evidence Base, Professional Education and

Training7. Trauma and Orthopaedics8. Ear, Nose and Throat (ENT)9. Ophthalmology10.Plastic Surgery 11.Burns12.Maxillofacial 13.Cleft Lip and Palate

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Paediatric Surgery Services for the Children and Young People of Wales

A clear distinction must be made between specialist paediatric surgery, undertaken by a Specialist Paediatric General Surgeon (usually in a lead centre setting) and General Paediatric Surgery (GPS). General Paediatric Surgery may be undertaken by General Surgeons with an interest (in the DGH setting) and also by Specialist Paediatric General Surgeons.18

This document applies to all children and young people under 16 years of age requiring surgical interventions. It is recognised that children with complex health needs and/or a learning disability may benefit from being cared for on a young person’s unit or a children’s ward during their transition period and thus the standards will apply into early adulthood for this group. The standards cover all elements of the surgical pathway including:

Pre-surgery Facilities / Resources Intra-operative management Recovery Follow up

Even though paediatric sedation is an area that is relevant to these standards, this has not been included, as guidance already exists. It is accepted that all relevant support facilities such as staffed children’s wards, blood bank, laboratory services and pharmacy facilities are in place in any environment where children’s surgery is undertaken 7 and these are therefore not repeated here.

A key component of safe surgery for children and young people is safe anaesthetic care and this is also covered in this document.19

As with other standards documents, there is a significant interface with other specialised services, in particular:

Oncology Cardiac Respiratory Endocrinology Neurosciences Renal Gastroenterology, Hepatology and Nutrition Neonatal Critical Care Adult Surgery

Standards from the documents for these services may therefore apply here.

Current key documents that have informed the development of this document. include:

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Royal College of Surgeons of England – Surgery for Children – Delivering a First Class Service18 (First Published 2000, revised 2007)

Royal College of Anaesthetists – Guidance on the provision of Paediatric Anaesthetic Services19

Scottish Intercollegiate Guideline Network (SIGN)- Safe sedation of children undergoing diagnostic therapeutic procedures20

Welsh Assembly Government- Caring for Critically Ill Children standards21

British Association of Paediatric Surgeons – Paediatric Surgery: Standards of Care 22

Department of Health - The acutely or critically sick or injured child in the District General Hospital. A team response23

Joint Statement on General Paediatric Surgery Provision in District General Hospitals in Great Britain and Ireland24

Provision of GPS in DGHs is currently the subject of active debate. The Association of Paediatric Anaesthetists, the Association of Surgeons for Great Britain and Ireland, the British Association of Paediatric Surgeons, the Royal College of Paediatrics and Child Health and a Senate for Surgery for Great Britain and Ireland have produced a joint document which outlined the current status (August 2006). 24 The joint statement highlights the developing crisis, which requires urgent attention by healthcare commissioners. In Wales there is only one centre for specialist paediatric surgery at the University Hospital of Wales, Cardiff (UHW); and historically surgeons with an interest in paediatric surgery have undertaken a number of procedures in children in DGHs. As experienced surgeons retire, with a lack of individuals suitably trained in general paediatric surgery, it may be that in several DGHs general paediatric surgery may no longer be deemed possible because skills have been lost or eroded. The impact on families is that they may need to travel greater distances to obtain access to surgical care, particularly if the child is very young. Increasing numbers of younger children requiring surgery (previously undertaken in DGHs) are being transferred to lead centre for both emergency and elective surgery without adequate planning, management or resourcing. Thus there is a tension between trying to provide highest quality care and also delivering the care as close to home as possible.

The issue not only involves surgery but also anaesthetic cover as similar problems pertain.

The joint statement has suggested models to increase the competence of general surgeons in the provision of GPS, but in the short term this is dependant on adequate numbers of competent general surgeons being willing and able to supervise trainees in the DGH setting, and the number of specialist paediatric general surgeons being willing and able to train general surgery trainees and consultants. It is uncertain whether there are sufficient numbers of supervisors to ensure the success of this proposition. There is no doubt that in order to maintain GPS competence in a DGH setting, managed local networks must be developed to enable anaesthetists and surgeons based in the lead centre to provide outreach clinics and operating theatre time at DGH, and that suitable anaesthetic care is provided in larger DGHs to

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enable maintenance of services for other surgical sub-specialities, such as Ophthalmology, ENT, Orthopaedics etc.

A reasonable model needs to consider elective and emergency surgery separately.

Elective General Paediatric Surgery

The vast majority of elective paediatric surgery can be provided in a day case setting.

There are four possible models of care; 1. Surgery delivered by a general surgeon with an interest in paediatric

surgery2. Surgery delivered by a paediatric general surgeon with a joint appointment

to the lead centre and the DGH3. Surgery delivered by a specialist paediatric general surgeon from the Lead

Centre operating as outreach from the lead centre4. All surgery in children is performed within the regional centres.

Emergency Paediatric Surgery

There are three possible models of care; 1. All surgery in children is sent to the lead centre - UHW for South Wales,

Royal Liverpool Children’s Hospital (RLCH) for North Wales2. The majority of paediatric general surgery cases are undertaken in the

DGH as long as this is safely and adequately resourced3. There are networks of DGHs (along with the lead centre) which undertake

surgery on a rota basis.

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Paediatric Surgery Service Models

Current Service Model

South and Mid Wales

Children requiring specialised surgery, whether elective or emergency are referred to the lead centre at UHW. There are five whole time equivalent (WTE) paediatric surgeons at this lead centre. General Paediatric Surgery is undertaken at most Trusts (including the lead centre) with varying frequency.

North Wales

Children requiring specialised surgery, whether elective or emergency, are referred to the lead centre at RLCH.

General Paediatric Surgery is undertaken by one or two general surgeons on dedicated paediatric lists at three of the DGHs with varying frequency. Each DGH has a number of anaesthetists who anaesthetise children routinely (for General Surgery, Ear, Nose and Throat, Ophthalmology and Trauma and Orthopaedic surgery, as well as for routine MRI scans or other investigations).

One DGH has a visiting paediatric surgeon who undertakes one list per month for non-specialised surgery on day case patients.

Each Trust holds one outreach clinic a month with the paediatric surgeon from RLCH seeing new and follow-up patients. Paediatric Urology clinics are also held bi-monthly at Wrexham. The local consultant paediatricians act as the link for referrals to these clinics.

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Proposed Service Model

The most important consideration is that the service is of the highest quality and safe for the child.

We need to consider North and South Wales separately as the lead (specialist) centre for North Wales is RLCH, whereas for South Wales it is UHW. The report of the Children’s Surgical Forum, Surgery for Children: Delivering a First Class Service (July 2007) 18 states that most General Paediatric Surgery will be performed in DGHs where the majority of consultant general surgeons contribute to the emergency surgical service for children in their local population. Children requiring emergency General Paediatric Surgery should only be admitted to a hospital where there is inpatient support and appropriate anaesthetic cover.

In DGHs that provide an elective general surgical service, sub-specialisation has evolved with elective children’s surgery provided by one or two general surgeons performing at least one dedicated operating list every fortnight.

The joint statement on the provision of General Paediatric Surgery proposed a three-centred model, forming a MCN 24 of care for general and specialist paediatric surgery.

The small DGHs should be able to provide resuscitation and stabilisation of all infants and children with surgical conditions. It should be able to provide elective children’s surgery depending on the availability of suitably trained surgeons, anaesthetists and other resources. Normally, neonates and infants would not be offered elective surgery. Management of urgent and emergency surgical problems in young children (<5 years) will depend on the training and experience of the available surgeon and anaesthetist and may require transfer to an intermediate or lead centre.

An intermediate centre (large DGH or university hospital) should be large enough to employ specialist paediatric surgeons to undertake General Paediatric Surgery, or general surgeons with an interest in paediatric surgery who will provide emergency and elective General Paediatric Surgery including babies but not normally neonates.

A specialist or regional/lead centre should provide the full range of paediatric surgical care including neonatal, urological and cancer surgery, supported by neonatal and paediatric intensive care and full retrieval facilities. Specialist paediatric surgeons and anaesthetists provide this care. General paediatric surgeons from these centres may provide outreach clinics and operating lists in network hospitals. 18

There will be specific instances where referral will be made to a supra-regional centre in England.

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South and Mid Wales

Specialist Paediatric Surgery

All specialist (elective and emergency) paediatric surgery is referred to the lead centre (UHW) and there should be development of outreach clinics for specialist paediatric surgical patients in DGHs. South Wales is unique in the UK in not having specialist paediatric outreach clinics.

General Paediatric Surgery

i. Elective General Paediatric Surgery

We advocate that the aforementioned 3-tier model could apply in South Wales. This pre-supposes that there will be adequate training in paediatric surgery for general surgeons who wish to develop an interest. It is important that both the general surgery faculty and specialist paediatric surgical centre provide such training.

Trusts in South Wales could be designated using the 3–tier model as below;

Newport - Level 2 Cardiff - Levels 2 and 3 Royal Glamorgan/Merthyr Tydfil - Level 2 Bridgend/ Swansea - Level 2 Carmarthen/Haverfordwest - Level1/2

/Aberystwyth

ii. Emergency General Paediatric Surgery

The provision of emergency general paediatric surgery in intimately linked with anaesthetic cover.

It is not desirable that all paediatric emergency surgery comes to the lead centre (option 1 as described on page 13)

Regarding options 2 and 3 (page 13) it is not clear at the present time which is the appropriate model.

Each hospital within South Wales should be assessed to determine its role in the overall provision of emergency general paediatric surgery. A MCN of care for general and specialist paediatric surgery should evolve. Where possible, a minimum of two surgeons should provide general paediatric surgery in a hospital. This may mean performing general paediatric surgery on fewer sites where hospitals are geographically close together.

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North Wales

Specialist Paediatric Surgery

RLCH will continue as the lead centre for all elective and emergency paediatric surgery. (Proposed NHS Reconfiguration may influence future model)

General Paediatric Surgery

Elective general paediatric surgery will continue in North Wales as agreed in the Secondary Care Review ‘Designed for North Wales’25 consultation. The surgery will be undertaken by general surgeons, with appropriate expertise and training, and in some centres by visiting paediatric general surgeons.

Emergency general paediatric surgery will continue in all three DGHs based on appropriate selection of patients in terms of age, clinical condition and co-morbidity and the availability of a suitable surgeon to undertake or directly supervise the procedure.

Any surgical procedure must be supported by appropriate and safe anaesthetic provision.

When necessary, the decision to transfer a child to a lead centre will be undertaken jointly by consultants in paediatrics, surgery and anaesthesia.

This pre-supposes that there will be adequate training in paediatric surgery for general surgeons who wish to develop an interest. It is important that the general surgery faculty provide such training alongside the specialist paediatric surgical centre and local Trusts must consider succession planning for these posts.

In the future all DGHs should plan to have General Paediatric Surgery undertaken in the local DGH by visiting specialist paediatric surgeons. The advantages of this arrangement are significant and include

Aspects of service improvement CPD and training of local surgeons and anaesthetic staff Enabling local surgeons to maintain their support and advice to local

paediatricians in emergency care Convenience for patients and parents, particularly considering the

geography of North Wales

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Paediatric Anaesthetic Services for the Children and Young People of Wales

The provision of a safe, high quality paediatric anaesthesia service underpins the delivery of all paediatric surgical specialties, together with acute pain services, airway management and the resuscitation and stabilisation of acutely ill children in all hospitals in Wales. Medical paediatric specialities are also dependant on paediatric anaesthesia services to facilitate investigations including MRI, CT and endoscopy and for the medical management of children receiving oncology treatment.

All anaesthetists receive specific dedicated teaching in paediatric anaesthesia as part of their training. Key competencies need to be achieved during this training. However, a minority of anaesthetists in DGHs regularly anaesthetise children and all DGH anaesthetists face a declining emergency paediatric workload as a consequence of the shift of paediatric emergency work to the lead centre. While this shift is largely historical, there continues a steady drift, particularly of emergency work toward the lead centre, reflecting the decline in numbers of anaesthetists in DGHs for whom anaesthesia for children falls within their regular workload. Paradoxically it is incumbent on this same workforce to provide resuscitation and stabilisation service for acutely ill children who require retrieval to paediatric intensive care in the lead centres for North or South Wales.

Extended training in paediatric anaesthesia, comprising six months in a specialist paediatric unit together with advanced training in life support for children, is recommended for those who wish to take on the role of designated or lead paediatric anaesthetist in a DGH. Consultants with a full time commitment to paediatric anaesthesia will normally have completed twelve months of advanced paediatric anaesthesia training in a lead centre.

While in the majority of Trusts in Wales elective paediatric surgery tends to be concentrated amongst a smaller group of general anaesthetists, the majority of Trusts do not have a separate paediatric anaesthesia on-call rota. However the expectation is that all consultant anaesthetists with a Certificate of Completion of Specialist Training (CCST) should be able to provide anaesthesia for elective and emergency surgery in children over the age of 5 years, ASA categories 1 and 2.19

With appropriate workforce planning it should be possible to ensure that anaesthetists can operate within their sphere of professional competencies for elective surgery. However there may be circumstances in which the unexpected presentation of an emergency paediatric patient, with a surgical or medical problem, will result in anaesthetists working beyond their range of practised competencies. This is more likely to occur within Trusts with no formal paediatric anaesthesia on-call rota. While it is the anaesthetist’s duty to provide the best possible care in these circumstances it is also the employing Trust’s duty to provide support to the anaesthetist.23

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Paediatric Anaesthetic Service Models


South and Mid Wales

Children requiring specialised elective or emergency surgery are referred to the lead centre at the University Hospital of Wales (UHW), Cardiff. There are currently seven WTE specialist paediatric anaesthetists at this lead centre who provide a comprehensive anaesthesia service for these children. An additional small but significant cross border flow from neighbouring English Trusts is also managed at UHW.

General Paediatric Surgery is undertaken at most Trusts including the lead centre where a group of specialist paediatric anaesthetists provide anaesthesia. A small amount of elective ENT, Trauma and Orthopaedics, Ophthalmic and Dental surgery undertaken at the lead centre has anaesthesia provided by general anaesthetists together with some emergency General Paediatric Surgery in older children. Support for this activity is provided by the specialist paediatric anaesthetists.

Within the DGHs in South and Mid Wales paediatric anaesthesia provision for elective surgery across the range of specialties tends to be concentrated amongst small groups of general anaesthetists both on mixed and dedicated paediatric lists. The precise pattern of delivery in each Trust is dependant on local factors. The emergency workload however, tends to be spread throughout the consultant body with only one larger DGH at Swansea providing a separate paediatric anaesthesia on-call rota. Currently no outreach service is provided from the lead centre.

North Wales

Children requiring specialist elective or emergency surgery are referred to the lead centre at the Royal Liverpool Children’s Hospital (RLCH). Each Trust has a number of anaesthetists who regularly anaesthetise children for elective paediatric general surgery ENT, Ophthalmic, Trauma and Orthopaedics, MRI and other investigations. At Ysbyty Glan Clwyd anaesthesia is provided for the visiting paediatric surgeon from RLCH on a monthly outreach list.

Anaesthesia for emergency non-specialist paediatric surgery including trauma and ENT, is provided on the same basis as South Wales. Ysbyty Glan Clwyd provides a separate (incomplete) paediatric anaesthesia on-call rota.

Proposed Service Model

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The most important considerations are that the service is of the highest quality and safe for the child. In all hospitals the emphasis should be on team working with the aim of providing the best package of care for the individual child, whether this is at the DGH or through referral to the respective lead centre.

Whilst it is necessary to acknowledge the geographical referral pattern to separate lead centres for South Wales (UHW) and for North Wales (RLCH), the establishment of a managed clinical network of care for general and specialist paediatric surgery and other surgical specialties is fundamental to the delivery of these aims.

1. DGHs should be able to provide resuscitation and stabilisation of all infants and children with surgical conditions. They should be able to provide elective children’s surgery depending on the availability of suitably trained surgeons, anaesthetists and a properly resourced paediatric anaesthesia team, including an acute pain team.

2. Normally, neonates and infants would not be offered elective surgery in the DGH.

3. Management of urgent and emergency surgical problems in children under the age of 5 years will depend on the training and experience of the available surgeon and anaesthetist and will probably only be possible when one of the cohort of anaesthetists who regularly anaesthetise children for elective surgery is on-call. The absence of one or more of this team will necessitate transfer to the lead centre. For certain surgical conditions where success or survival is time sensitive rapid transfer should be ensured with the best available team unless it is considered clinically inappropriate. Transfer will be to respective lead centre in North or South Wales. Transfer to an intermediate centre is not practical for comprehensive anaesthesia care.

4. The lead centre should provide the full range of paediatric general surgical care including neonatal, urological and cancer surgery, supported by neonatal and paediatric intensive care and full retrieval facilities. In the lead centres, care will be provided by specialist paediatric anaesthetists and specialist paediatric general surgeons with appropriate supporting infrastructure.

5. Designated or lead paediatric anaesthetists and those who regularly anaesthetise children in the DGHs should be funded to attend regular refresher training at the lead centre.

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North Wales

Anaesthetic services for children undergoing General Paediatric Surgery in DGHs in North Wales should be co-ordinated in each centre by a nominated lead consultant anaesthetist.

They will be responsible for ensuring that the standards for paediatric anaesthesia services in each centre meet nationally agreed standards in line with the recommendations of the Royal Colleges. 18, 19

They will develop local policies for the provision of anaesthesia for both elective and emergency paediatric general surgery. Such policies will include ensuring the availability of an appropriately trained anaesthetist to oversee / undertake the anaesthetic and the provision of appropriately trained support staff / facilities.

For emergency cases factors such as the child’s age, co-existing medical problems, nature of the surgery, severity of illness and need for critical care may necessitate transfer to RLCH. The decision to transfer a child will be made by consultant staff in anaesthesia, surgery and paediatrics in consultation with the lead centre.

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Standard 1: Anaesthetic and General Surgery - Environment and Facilities

Rationale: Children requiring anaesthetic care and/or surgery should be dealt with in a child-friendly environment with appropriate facilities and equipment

Key Actions:

Key Action Responsible organisation

Timescales

Environment1.1 Children and young people admitted to hospital for surgery are nursed in a child-friendly environment. 7,17

HCWLHBsTrusts

Less than 1 year

1.2 Children and young people’s surgical care is undertaken in an environment with age appropriate facilities and equipment, both surgical and anaesthetic, of the correct size and type for the child’s age.7,17

HCWLHBsTrusts

Less than 1 year

1.3 Age appropriate and suitable inpatient facilities for adolescents are available based on choice. The needs of adolescents are recognised and met within the organisation. 7

HCWLHBsTrusts

1-3 years

1.4 Appropriate paediatric formularies are available in all areas where children and young people are cared for. 7 (KA 2.27),17 (KA 2.7)

HCWLHBsTrusts

Less than 1 year

1.5 All intravenous fluids are administered through infusion pumps.

HCWLHBsTrusts

Less than 1 year

1.6 The anaesthetic room and theatre has appropriate thermostatic control with available temperature monitoring and patient warming devices.17

HCWLHBsTrusts

Less than 1 year

1.7 Paediatric resuscitation equipment for all age ranges is available in each area where children and young people are cared for. 7

HCWTrustsLHBs

Less than 1 year

1.8 After surgery, children and young people are cared for in a dedicated, visually distinct, child-friendly recovery environment, and by staff with training and experience in caring for this age group. 17,21

HCWLHBsTrusts

Less than 1 year

1.9 Play specialists are employed in all appropriate areas and all stages of this

HCWLHBs

4-10 years

22

service.7 (KA 7.16),17 (KA 2.8) Trusts

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2, 4, 11, 19 and 22.

23

Standard 2: Anaesthetic Care for Elective and Emergency Surgery in All Settings

Rationale: All children and young people requiring surgery have anaesthetic care delivered by anaesthetists with training and expertise in the management of anaesthesia in children. The delivery of this care is supported by appropriately trained multi-disciplinary teams, facilities and equipment and is applicable to all locations where children and young people are managed.

Key Actions:


Timescale

2.1 Paediatric anaesthesia is always delivered or supervised by an appropriately trained consultant.19,20

HCWTrustsLHBs

Less than 1 year

2.2 Individual Trusts develop their own guidelines based on the recommendations of the Royal College of Anaesthetists (RCA). 19

TrustsLHBMCN

1-3 years

2.3 There is a senior person within the Trust who leads a children’s surgical services committee. This committee must include the lead anaesthetist for children and young people. (Appendix 3)

TrustsLHBs

Less than 1 year

2.4 Trusts direct succession planning and the special interests of the new appointees to the anaesthetic team.

TrustsLHBs

Less than 1 year

2.5 All children and young people have an anaesthetic assessment prior to surgery.

TrustsLHBs

Less than 1 year

2.6 All anaesthetic support staff involved in the care of children have received training in care of the anaesthetised child and young person. 19

TrustsLHBs

1-3 years

2.7 Anaesthetic assistants supporting anaesthesia for specialised emergency surgery in children under the age of 1 year are PLS or APLS trained. 19

TrustsLHBs

Lead Centre

1-3 years

2.8 Parents/carers are offered access to their child in the anaesthetic room and recovery area if safe and appropriate.

Trusts Less than 1 year

2.9 In the recovery area, following surgery, the child is managed on a 1:1 basis by designated staff that regularly undertake paediatric resuscitation training. 18

TrustsLHBs

4 –10 years

24

2.10 All recovery areas caring for children have access to a Child Branch/RSCN at all times. 17

TrustsLHBs

Less than 1 year

2.11 Paediatric high dependency care is immediately available.

HCWTrustsLHBs

1-3 years

2.12 There is a clearly defined protocol for access to paediatric intensive care services. 17,

18, 21

HCWTrustsLHBs

Less than1 year

2.13 All DGHs have a nominated lead anaesthetist with responsibility for children’s anaesthesia services. 19

HCWTrusts

Less than 1 year

2.14 In an acute surgical emergency that requires a child to receive emergency anaesthetic care, the most appropriate available anaesthetist will deliver the anaesthetic. 19


2.15 All emergency areas receiving children and young people requiring emergency surgery have 24hr access to staff trained in APLS. 18,19

HCWTrustsLHBs

1-3 years

2.16 An agreed care pathway is in place for emergency transfer of care for children who require level 2 (or above) care and will not be retrieved by a specialist Paediatric Intensive Care Unit (PICU) team. Referring Trust staff will make arrangements for transfer from DGH to another centre. 17, 18

HCWLead Centres

MCNTrusts

Ambulance Trust

Less than1 year

2.17 Each Trust has an acute pain management service for children and young people.17

LHBsTrusts

Less than 1 year

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2,3,11,12,22,23,24 and 28.

25

Standard 3: Elective General Surgery for all age groups in All Settings

Rationale: All children and young people requiring surgery have surgical care delivered by surgeons with appropriate training and expertise in the surgical management of children. The delivery of this care is supported by appropriately trained multi-disciplinary teams, facilities and equipment and is applicable to all locations where children and young people are managed.

Key Actions:


Timescale

3.1 All children and young people admitted as an in-patient for general paediatric surgery are admitted to a paediatric ward under the joint care of a surgeon and paediatrician. Each Trust has a defined protocol to address this.

TrustsLead Centres

MCNLHBs

Less than 1 year

3.2 Each DGH has a multidisciplinary committee comprising senior clinicians, lead surgeon and Child Branch/RSCNs. This group is responsible for improving and integrating local hospital services for children and addressing issues of common concern. 18

TrustsLHBs

Less than 1 year

3.3 Trusts direct succession planning and the special interests of new appointees to the surgical multi disciplinary team as part of regional planning.

TrustsLHBs

Less than 1 year

3.4 In order for Trusts to provide elective paediatric general surgery it is essential that there is a trained general paediatric surgeon.

TrustsLHBs

4-10 years

3.5 All general surgeons (appointed after 2000) responsible for the care of children have received six months appropriate training in paediatric surgery and are competent in managing unsupervised general paediatric surgery. 18

LHBsTrusts

Less than 1 year

3.6 On site paediatric services are available 24 hours a day for consultation and assistance in the care of any child who is a surgical in-patient. 18, 21

TrustsLHBs

Less than 1 year

3.7 The staffing of every area involved in the care of children and young people requiring surgery includes access to Child Branch/RSCNs nurses at all times. 17, 18

LHBsTrusts

1-3 years

26

3.8 There is access to radiological services for children throughout the MCN for investigations and their interpretation.18

TrustsLHBs

Less than 1 year

Pre-operative Management

3.9 All children and young people have a surgical, anaesthetic and, where appropriate, a medical and therapy assessment prior to surgery.

TrustsLHBs

Less than 1 year

3.10 A pre-operative familiarisation visit is offered to prepare the child for admission to hospital.

TrustsLHBs

Less than 1 year

3.11 Pre-operative information is offered for children and parents in a variety of formats, media and languages.7

TrustsLHBs

Less than 1 year

3.12 Whenever possible children are operated on as a day case. 18,22

TrustsLHBs

Less than 1 year

3.13 All children and young people with complex health needs are referred to the lead centre.

HCWTrustsLHBs

Less than 1 year

3.14 For children receiving day case surgery, facilities are available for immediate stabilisation prior to any required transfer.

HCWTrustsLHBs

1-3 years

3.15 For children requiring in-patient treatment, paediatric high dependency care is immediately available.

HCWTrustsLHBs

1-3 years

3.16 There is a clearly defined process for access to paediatric intensive care services. 18

HCWTrustsLHBs

Less than1 year

Intra-operative Management

3.17 Paediatric resuscitation equipment for each age range is available in all areas where children and young people are cared for. 7, 17 (KA

2.10)

HCWTrustsLHBs

Less than 1 year

3.18 When children are operated on general surgery lists, wherever possible, children are placed at the beginning of the theatre list.


Emergency

3.19 In unexpected emergency events the DGH based surgeon has a clearly defined process to consult with lead centre/ specialist.


Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2,3,4,6,11,12,19,21,22,23 and 24.

27

Standard 4: Emergency General Surgery for All Age Groups in All Settings

Rationale: Emergency general surgical care for children and young people is delivered by surgeons with appropriate training and expertise in the surgical management of children. The delivery of this care is supported by appropriately trained multi-disciplinary teams, facilities and equipment and is applicable to all locations where children and young people are managed.

Key Actions:


Timescales

4.1 Each Trust has a plan to address out of hours emergency general surgery that includes agreed written protocols for providing emergency surgery for children.18

TrustsLHBs

1-3 years

4.2 In an immediate unexpected life-threatening situation, emergency surgical care is provided by the most appropriate available surgeon.

TrustsLHBs

Less than 1 year

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 3, 11 and 12.

28

Standard 5: Specialist Paediatric Surgery

Rationale: All children and young people requiring specialised surgery are managed in the lead and specialist centres by appropriately trained surgical and anaesthetic teams. The delivery of this care is supported by appropriately trained multi-disciplinary teams, facilities and equipment and is applicable to all locations where children and young people are managed.

Key Actions:


Timescales

5.1 Children with a diagnosis that complies with the definitions listed by the British Association of Paediatric Surgeons (BAPS) will undergo surgery in a specialist centre. (Appendix 4)

HCWTrustsLHBs

Less than 1 year

5.2 Senior surgical, anaesthetic and paediatric DGH staff have 24 hours a day access to specialist paediatric surgical and anaesthetic advice from the lead centre.

HCWTrustsLHBs

Less than 1 year

5.3 General paediatricians are able to directly refer patients to the lead centre specialist surgical service.

HCWTrustsLHBs

Less than 1 year

5.4 For every child requiring review by a specialist paediatric surgeon appropriate and timely plans are made across the MCN in one of the following ways; Immediate in-patient transfer to a

lead/ specialist centre Out-patient appointment at

lead/specialist centre Out-patient appointment at local

Specialist outreach clinics in the DGH.

HCWLHBsTrusts

Less than 1 year

5.5 Waiting times for out-patient appointments and surgery in children and young people comply with existing Welsh Guidelines.26

HCWTrustsLHBs

1-3 years

5.6 Specialist paediatric surgery services are provided by appropriately trained specialists.18

Lead CentresHCW

1-3 years

29

5.7 The MCN has access to comprehensive and appropriate investigations.

HCWLHBsTrusts

1-3 years

5.8 Parents and patients have written instructions on how to access specialist advice during and outside of routine working hours.

HCWTrustsLHBs

Less than 1 year

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2, 6, 11, 12 and 22.

30

Standard 6: Anaesthetics and General Surgery – Evidence Base Professional Education and Training

Rationale: All members of the MCN are trained to the required standard to deliver a high quality, evidence based service. The delivery of this care is supported by appropriately trained multi-disciplinary teams, facilities and equipment and is applicable to all locations where children and young people are managed.

Key Actions:


Timescales

6.1 In accordance with RCA guidelines all consultant anaesthetists responsible for the care of children maintain their competence through regular exposure, continuing education and professional development (CEPD) and/or refresher courses, including the opportunity for secondment to specialist centres. 19

HCWTrustsLHBsMCN

Less than 1 year

6.2 All general surgeons responsible for the care of children maintain their competence through regular exposure, continuing professional development (CPD) and/or refresher courses, including the opportunity for secondment to specialist centres and specialist paediatric surgery. 17, 18

HCWTrustsLHBs

Less than 1 year

6.3 General surgeons responsible for performing surgery on children and young people are trained in Paediatric Life Support (PLS) or its equivalent. 18

LHBsTrusts

4-10 years

6.4 General surgeons receive PLS training in their six-month paediatric experience during their training programme. 18

TrustsDeanery

Less than 1 year

6.5 Joint arrangements are in place for surgeons and anaesthetists from DGHs to undertake regular supernumerary attachments to paediatric lists, or secondments to the lead centre in order to maintain their paediatric knowledge and skills. 18

TrustsLHBs

1-3 years

6.6 All members of the multi-disciplinary team have dedicated time and funding to access speciality training and other professional activities to maintain their knowledge and skills through CPD. 17

TrustsHCW

1-3 years

6.7 All MDT members regularly undertake paediatric resuscitation training.

HCWLead Centres

Less than 1 year

31

TrustsMCN

6.8 External peer review is part of the annual audit programme. 17

HCWLead Centres

LHBsTrustsMCN

Less than 1 year

6.9 Annual mortality data is published by each lead centre.21,17

HCWLead Centres

Less than 1 year

6.10 Care pathways are in place for surgical interventions at DGHs and lead centres for elective and emergency surgery. 17 (KA 5.6)

HCWTrustsLHBs

1-3 years

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 11, 22, 24 and 28.

32

Paediatric Trauma and Orthopaedic Services for the Children and Young People of Wales

The delivery of orthopaedic care has changed over recent years with an increasing trend to sub-specialisation. The number of children requiring treatment has increased by more than 40% between 1993 and 2005; however, the number of consultants providing care for children has not changed.

All orthopaedic consultants receive a Certificate of Completed Training in Trauma and Orthopaedics, which includes the management of common paediatric trauma and common paediatric orthopaedic conditions. In addition a specialist paediatric orthopaedic surgeon will normally have undergone additional specialist training as a registrar in paediatric orthopaedic surgery and will be able to recognise and manage some, but not necessarily all orthopaedic conditions. It is expected that a specialist paediatric orthopaedic surgeon will undertake regular paediatric clinics and theatre sessions, with appropriate support from paediatricians, anaesthetists, nurses, physiotherapists and other health professionals. Furthermore, the specialist paediatric orthopaedic surgeon should be a member of the British Society of Children’s Orthopaedic Surgery (BSCOS), which is affiliated to the British Orthopaedic Association (BOA).

A lead paediatric orthopaedic centre is defined as a centre where paediatric orthopaedic surgery is undertaken by a team of two or more specialist paediatric orthopaedic consultants. The lead centre will be expected to deal with a wider range of more complicated paediatric orthopaedic conditions and must have appropriate support from a multidisciplinary team.

Paediatric orthopaedic surgery services that should be regarded as specialised are indicated in Appendix Five. The more common and less complex conditions can be managed in a district general hospital (DGH) by a general orthopaedic surgeon.

There is a lack of appropriately trained specialist paediatric orthopaedic consultant surgeons that has resulted in long waiting times for treatment. A number of the surgical conditions are ‘time critical’ and have to be treated quickly to achieve a satisfactory result.

No specialist service for children and young people stands alone and the trauma and orthopaedic service needs to interface with other specialised services in particular:

Neurosciences Oncology Paediatric Critical Care General Surgery

33

The current key document that has informed the development of the trauma and orthopaedic standards is Children’s Orthopaedics and Fracture Care (Blue Book), 2006, British Orthopaedic Association. 27

34

Trauma and Orthopaedic Service Model

Current service models

South and Mid Wales

In South Wales there are three hospitals with dedicated paediatric orthopaedic services. These are;

University Hospital of Wales (UHW) which has three part-time paediatric specialist orthopaedic surgeons and four spinal surgeons

Morriston Hospital which has two part-time paediatric specialist orthopaedic surgeons

Royal Gwent Hospital (RGH) which has one part-time paediatric specialist orthopaedic surgeon.

These centres provide trauma and elective services for their local communities as well as the specialist paediatric services for the surrounding areas and South and Mid Wales.

Straightforward trauma and non-specialised elective surgery on children and young people is undertaken in most of the other Trusts. Children and young people with complicated trauma or multiple injuries are usually referred to the paediatric orthopaedic surgeons at UHW or Bristol Royal Hospital for Children (BRHC) except where the specialist services of maxillofacial and/or plastic surgery is required in which they would be referred to Morriston Hospital.

More complex elective conditions are referred for diagnosis and treatment to UHW, Morriston Hospital or RGH. Gwent has a strong relationship with BRHC and has been referring children requiring specialised orthopaedic surgery (except spinal surgery) to BRHC for over fifteen years.

Children and young people from across South Wales with musculo-skeletal tumours are referred to Birmingham Children’s Hospital (BCH). There are occasional specific cases that are referred from UHW and Morriston Hospital directly to BRHC.

Children with cerebral palsy requiring gait analysis may also be referred to the Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry (RJAH).

Each of the specialist centres provide out-patient clinic services to special schools and also provide clinics for limb length discrepancy, clubfoot, hip dysplasia and muscle clinics.

The specialist centres at UHW and Morriston Hospital provide surgery for cerebral palsy, developmental dysplasia of the hip from birth to adulthood, clubfoot treatment with the Ponseti method (and by standard operative techniques), limb length discrepancy and deformity work including Ilizarov methods. In addition, most neuromuscular conditions are managed at UHW and Morriston Hospital.

35

Specialist spinal surgery for children and young people takes place at UHW where there are four spinal surgeons with an interest in paediatric orthopaedics. They deal with paediatric spinal trauma and spinal deformity for South Wales and much of Mid Wales. There are two specialist scoliosis clinics per month in UHW held in Cardiff and Vale Orthopaedic Clinic (CAVOC) at Llandough Hospital, and one outreach clinic at Morriston Hospital. There are between 1-2 scoliosis theatre lists per week (60 cases per year) and one nurse with a specialist interest in the management of children and young people with scoliosis.

In Mid Wales virtually no elective surgery is carried out at Bronglais Hospital, Aberystwyth apart from treatment for minor paediatric injuries and conditions.

Therapists form part of the multidisciplinary teams within the acute and community settings. Therapy services are provided in a variety of settings both in hospital and in the community; however, there are considerable variations across trusts in terms of the organisation and expertise available.

Local physiotherapy developments exist, although these services are limited examples of good practice in South Wales include:

Ponseti treatment Normal variants of gait Pre-operative assessment for elective spinal and orthopaedic surgery

in the acute sector Selection for Botulinum and specialist follow-up.

Overall it is recognised that the South Wales services are under resourced, hence the dependency, particularly in Gwent and South Powys on the specialist services of BHRC.

North Wales

In North Wales and Powys, the majority of specialist care is provided by RJAH although some children and young people are referred for care to RLCH where there is access to paediatric intensive care.

The RJAH offers a secondary and specialist paediatric orthopaedic service to the children of North Wales. The paediatric orthopaedic team consists of two full time, two part time and two visiting specialist orthopaedic consultant surgeons. There are two full time consultant paediatricians, with visiting paediatricians for specialist clinics that include skeletal dysplasia, clubfoot, limb deficiency and muscle clinics. In addition, the team works with spinal, upper limb, sports and tumour surgeons to treat children. There is a gait laboratory and orthotic department on site, along with a basic science research unit. The orthopaedic consultants provide clinic services to North and Mid Wales, including the special schools.

The department deals with a variety of paediatric orthopaedic conditions as detailed below.

36

The management of the child with; Cerebral Palsy including Botulinum toxin, multilevel surgery and

rehabilitation, selective dorsal rhizotomy Spasticity management Intrathecal Baclofen Developmental dysplasia of the hip from birth to adulthood Talipes by Ponseti method Limb deformity / leg length discrepancy work including Ilizarov method Neuromuscular conditions e.g. Duchenne Muscular Dystrophy (DMD),

myopathies, Hereditary Motor Sensory Neuropathies (HMSN) Secondary trauma work

There is a weekly outreach paediatric orthopaedic clinic at Ysbyty Glan Clwyd and Wrexham Maelor Hospital; and elective orthopaedic surgery is performed at Ysbyty Glan Clwyd Hospital on an adhoc basis.

Children and young people from Bangor are generally referred to RJAH except for the problem of Talipes, which is referred to RLCH. For trauma cases, children aged less than 6 months from Ysbyty Gwynedd, Bangor are generally referred to RLCH, as they will require the services of a paediatric anaesthetist.

37

Proposed Service Models

South and Mid Wales

Specialist paediatric orthopaedic services to continue at UHW, Morriston Hospital and RGH. However, there is need for further specialist service provision and in South Wales in particular to develop additional services for more complex conditions in conjunction with the other related specialist services e.g. neurosciences, oncology, paediatric intensive care and general surgery. Detailed consideration is required as to where these are located. Until such services are fully established the provision of some services from BRHC remains important.

There needs to be an increase in WTEs in all South Wales centres, with each centre taking a lead role in a specific supra-specialist area.

Outreach services need to be further developed from specialist centres to DGHs, and each Trust will identify a local lead orthopaedic surgeon with an interest in children and young people who will be responsible for reviewing children and young people with complex trauma and orthopaedic conditions. This person will act as the liaison into the MCN, and locally ensure standards for all paediatric orthopaedic conditions are delivered. There will be a close interface with the paediatric neurology and neurodisablity service, including joint clinics, as many children need combined management.

Further development of therapy services is also required, including establishing the role of extended scope physiotherapists (Appendix Six). Additionally a specialist nurse in paediatric trauma and orthopaedic care and a specialist nurse in the management of spinal conditions are required in each of the specialist centres as part of the outreach service.

North Wales

There will continue to be two specialist centres providing care for children and young people from North Wales, the RLCH and RJAH. There will need to be an increase of one WTE paediatric orthopaedic surgeon at RLCH to support this. The two specialist centres will provide outreach clinics to Trusts in North Wales.

38

Standard 7: Trauma and Orthopaedics

Rationale: All children and young people requiring management of their trauma and orthopaedic condition have access to an orthopaedic surgeon with appropriate training and expertise in the trauma and orthopaedic management of children. The delivery of this care is supported by appropriately trained multidisciplinary teams, facilities and equipment and is applicable to all locations where children and young people are managed.

Key Actions:


Timescale

7.1 The treatment of children with conditions on the paediatric orthopaedic surgery list (Appendix 6) is managed directly by, or in consultation with a specialised paediatric orthopaedic surgeon. 27

HCWLHBsTrusts

1-3 years

7.2 All children and young people admitted as an in-patient for trauma/orthopaedic care are admitted to a paediatric ward under the joint care of a trauma/orthopaedic surgeon and paediatrician. Each Trust has a defined protocol to address this.

HCWLHBsTrusts

1-3 years

7.3 Children and young people requiring emergency trauma and orthopaedic care are only admitted to hospitals where there is also a paediatric service.

HCWTrustsLHBs

Less than 1 year

7.4 Each Trust has a nominated lead orthopaedic surgeon with responsibility for paediatric trauma and orthopaedic services who is a member of the Trust paediatric surgical services committee.

TrustsLHBs

Less than 1 year

7.5 On site paediatric services are available 24 hours a day for consultation and assistance in the care of any inpatient child requiring trauma and orthopaedic surgical care.17, 21

TrustsLHBs

Less than 1 year

7.6 Child Branch/RSCN nurses who care for children and young people requiring trauma and orthopaedic management have undertaken additional trauma/orthopaedic training. Each Trust has a minimum of two such nurses.

LHBsTrusts

1-3 years

39

7.7 Guidelines for the management, treatment and onward referral of fractures and soft tissue injuries in children and young people are in place in accident and emergency departments (A&E) and minor injury units.

TrustsLHBs

Less than 1 year

7.8 Wherever possible children are placed at the beginning of a theatre list.


7.9 In their training programme, during their six-month paediatric experience, orthopaedic surgeons receive PLS training.


7.10 At DGH and community settings children and young people are cared for by appropriately trained MDTs with access to specialist advice from the lead centre. (Appendix 7)

HCWLHBsTrusts

1-3 years

7.11 Trusts maintain succession planning for consultant orthopaedic surgeons and other members of the MDT to ensure that a secondary care children’s orthopaedic service is available.

TrustsLHBs

Less than 1 year

7.12 Training is provided to all key workers in the psychosocial care of children, young people and their families.

HCWLead Centres

LHBs

Less than 1 year

7.13 Trusts employ extended scope practitioner physiotherapists (ESP) with appropriate training and expertise to run physiotherapy-led clinics. (Appendix 5) 28

LHBsTrusts

1-3 years

7.14 Clinical guidelines are available for each step of the pathway. Multidisciplinary clinical pathways are in place for the management of children and young people requiring trauma and orthopaedic services including:

- pre-assessment clinic- in-patient care- discharge planning- community care.

TrustsMCN

1-3 years

7.15 There is access to paediatric orthotic services that meet appropriate standards, across the MCN.

HCWTrustsMCN

1 – 3 years

7.16 There is a care pathway that ensures urgent access to an orthopaedic clinic for suspected developmental dysplasia of the hip (DDH).

TrustsLHBsMCN

Less than 1 year

40

7.17 A paediatric physiotherapist is present at paediatric orthotic clinics.

TrustsLHBs

Less than 1 year

7.18 Two paediatric surgeons are present when a child or young person undergoes scoliosis surgery. 29

Lead CentresHCW

Less than 1 year

7.19 Telemedicine facilities for transfer of bone imaging is available at lead centres and all DGHs. 30

WAGHCW

4-10 years

7.20 Access to gait analysis laboratories is available by specialist paediatric orthopaedic referral to lead/specialist centres.

HCWLead Centre

1-3 years

7.21 Children and young people are seen in a visually distinct, child-friendly environment in the out-patient department.7

TrustsLHBs

Less than 1 year

7.22 Children’s trauma, orthopaedic and scoliosis clinics at lead centres are staffed by Child Branch/RSCN nurses with relevant trauma and orthopaedic experience and physiotherapists with paediatric experience.

Lead CentresHCWLHBs

Less than 1 year

7.23 Each lead centre provides multi-disciplinary outreach clinics across the network. This may include clinics held in special schools.

HCWLHBsTrustsMCN

1-3 years

7.24 Where long term follow- up is necessary for children with orthopaedic conditions, access to paediatric physiotherapy/ paediatric nurse-led follow up is available where appropriate.

HCWLHBsTrusts

1- 3 years

7.25 Correspondence is copied to all members of the MDT involved in the care of children and young people.

LHBsTrusts

Less than 1 year

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2,4,11,12,22,24 and 28.

41

Paediatric Ear, Nose and Throat (ENT) Services for the Children and Young People of Wales

Paediatric ENT services manage diseases that affect the upper airway, nose throat and ears. ENT problems in children are very common and are estimated to account for 38% of General Practitioner (GP) consultations. ENT surgery is the single largest contributor to the total paediatric surgical workload in Wales; despite this the speciality is often perceived as a minor surgical speciality in the context of paediatric services as a whole.

Services for children have always formed a significant part of the service provided by ENT surgeons and have traditionally been managed as part of the adult service, although usually the children and young people are cared for on a paediatric surgical ward. The management of specialist ENT conditions (Appendix Eight) should be concentrated at specialist centres in partnership with colleagues from DGHs.

Local emergency paediatric ENT services should be maintained through the development of a professional MCN designed to maintain skills, especially those relating to emergency airway surgery. No unit can devolve its immediate responsibility for dealing with an airway emergency to the lead centre. A fundamental principle in the care pathway is that the local team deals with any critically ill child. Once the airway is secured retrieval by the lead centre PICU team can be arranged. The PICU retrieval team is not an ‘airway team’, although they can safely manage the transfer of a child who is intubated or who has a tracheostomy.

A number of support services are necessary and form an important part of the clinical team delivering paediatric ENT services (Appendix 8). These should be available wherever paediatric ENT services are being provided in order to maintain a quality service for children in Wales.

As with other services, there is a significant interface with other specialised services, in particular:

Critical Care Neonatal Surgery and Anaesthetics Paediatric Surgery and Anaesthetics Neurosurgery Oncology Respiratory Burns Plastic Surgery Maxillofacial Ophthalmology

The standards documents from those services may therefore apply here.

42

The evidence base for the ENT service remains underdeveloped; however, key documents have helped inform the development of these standards, including:

Newborn Hearing Screening Wales Quality Manual (2006) 31 Cochlear implants for children and young people (2005) 32

Working Together Speech and Language Services for Children and Young People (2003) 33

Guidelines for the Early Identification and the Audiological Management of Children with Hearing Loss (2000) 34

Auditory, Balance and Communication Disorders (2002) 35

Audiology is a speciality concerned with the investigation, diagnosis and management of auditory, balance and communication disorders. A large number of children with glue ear would not need to be referred to an ENT surgeon and therefore they are not discussed in this document.

43

Ear, Nose and Throat (ENT) Service Model

Current Service Models

South and Mid Wales

The lead centre for specialist ENT surgery is at the University Hospital for Wales, Cardiff (UHW). Children and young people requiring hospital care are managed by ENT surgeons at DGHs and referred on to the specialist centre at UHW if necessary. Conditions that require specialised care for complex ENT disorders (Appendix Eight) are seen at UHW. Elements of shared care are established across the network and on occasions specialised care is delivered at the DGH with appropriate support dependent on training and experience. On the rare occasions that highly specialised care is required the DGH (after discussion with the lead centre) will refer to either Great Ormond Street Hospital (GOSH) or Birmingham Children’s Hospital (BCH).

North Wales

The majority of children and young people requiring routine ENT surgery are managed by the general ENT services at the DGHs. Specialised care is provided at the lead centre at RLCH. Children and young people requiring highly specialised care are referred via the lead centre or the DGH (in conjunction with the lead centre) to the Queen’s Medical Centre, Nottingham Children’s Hospital (QMC).


South and Mid Wales

Continue current service model, with all elements of shared care fully commissioned.

North Wales Continue current service model, with all elements of shared care fully commissioned.

44

Standard 8: Ear Nose and Throat (ENT)

Rationale: All children and young people requiring management of their ENT condition have access to an ENT surgeon with appropriate training and expertise. The delivery of this care is supported by appropriately trained multidisciplinary teams, facilities and equipment and is applicable to all locations where children and young people are managed.

Key Actions:


Timescales

8.1 All children and young people admitted as an inpatient for an ENT surgical procedure are admitted to a paediatric ward under the joint care of an ENT surgeon and paediatrician. Each Trust has a defined protocol to address this.

TrustsLHBs

Less than 1 year

8.2 On site paediatric services are available 24 hours a day for consultation and assistance in the care of any inpatient child requiring ENT surgical care.18

TrustsLHBs

Less than 1 year

8.3 Each unit undertaking ENT surgery on children has a lead ENT surgeon and lead Child Branch/RSCN ENT nurse.

TrustsLHBs

Less than 1 year

8.4 Each unit undertaking ENT surgery on children has Child Branch/RSCN nurses with expertise in the management of children and young people with ENT conditions including tracheostomy management.

TrustsLHBs

1-3 years

8.5 An agreed care pathway is in place for emergency transfer of care for children who require level 2 (or above) care and will not be retrieved by a specialist PICU team. Referring Trust staff will make arrangements for transfer from DGH to another centre.

HCWLead Centres

MCNTrusts

Ambulance Trust

Less than1 year

8.6 All consultant ENT surgeons responsible for the care of children maintain their competence through regular exposure, continuing education and professional development (CEPD) and/or refresher courses, including the opportunity for secondment to specialist centres.

HCWTrustsLHBs

Less than 1 year

45

8.7 Each Trust has a nominated lead ENT surgeon with responsibility for paediatric ENT services who is a member of the Trust paediatric surgical services committee.

TrustsLHBs

Less than 1 year

8.8 On the occasions when children are operated on general adult surgery lists, wherever possible children are placed at the beginning of the theatre list.


8.9 Following surgery, children and young people are cared for in a dedicated, visually distinct, child-friendly recovery environment and by staff with training and experience in caring for this age group. 17

HCWLHBsTrusts

Less than 1 year


TrustsLHBs

Less than 1 year

8.11 Play specialists are available in all areas and all stages of this service. 7 (KA 7.16),17 (KA 2.8)

HCWLHBsTrusts

1-3 years

8.12 Each DGH unit has access to support from a multidisciplinary paediatric hearing team. (Appendix 8)

TrustsLHBs

Less than 1 year

8.13 There is an appropriate MDT (Appendix 8) available for children and young people who receive cochlear implants/bone anchored hearing aids.

Lead CentresHCW

Less than 1 year

8.14 All children and young people who have a tracheostomy are supported by a MDT.7

(Appendix 8)

TrustsLead Centres

LHBs

Less than 1 year

8.15 Designated time is available for all members of MDT to offer outreach and shared care where necessary.

Lead CentresHCW

Less than 1 year

8.16 A care pathway is in place for the care of children and young people with a tracheostomy.

TrustsMCN

Less than1 year

8.17 Respite care is available for children and young people with a tracheostomy. 7

LHBsTrusts

1-3 years

8.18 The care of children requiring an emergency tracheostomy at the DGH must be discussed (consultant to consultant) with PICU and an ENT surgeon at the lead centre, pending retrieval and transfer.


46

8.19 A care pathway is in place for the joint surgical and anaesthetic management of paediatric airway emergencies.

TrustsLHBs

Less than 1 year

8.20 All professionals caring for children with ENT health needs across the MCN are trained and assessed in the management of paediatric airway emergencies. This is a high priority for CPD.

TrustsMCN

Less than 1 year

8.21 Appropriate age-specific equipment is available for emergency airway management. All relevant staff undergo regular training in emergency airway management. KA 8.20


8.22 Referral to an appropriately trained and experienced speech and language therapist is available to children with ENT disorders that are likely to impact on communication and/or feeding.

TrustsLHBsHCW

1-3 years

8.23 Children with acute dysphagia and/or communication problems are seen urgently by hospital and/or community speech and language services. Children requiring routine speech and language care are seen within 26 weeks total wait by December 2009. 36

TrustsLHBs

1-3 years

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2,3,4,11,12,19,22,24 and 28.

47

Paediatric Ophthalmology Services for the Children and Young People of Wales

Ophthalmic health in children encompasses all the sub-specialities of ophthalmology, which include diseases of the lids and surrounding structures to disorders of the retina, optic nerve and disorders of the nervous system, which affect the visual and ocular motor system.

Development of important visual functions occur rapidly after birth, the sensitive period, and the visual system is susceptible to ocular and brain disorders causing abnormal visual development. However, the visual system has an inherent plasticity during the sensitive period and most disorders are amenable to treatment if detected early enough.

A paediatric Ophthalmologist, a medical doctor who sub specialises in ophthalmology and paediatric ophthalmology, is trained in the diagnosis and management of disorders which affect the eye and its surrounding structures, namely the orbit, brain and facial structures.

In addition the eye and visual system may be affected by a number of systemic diseases where there may be a significant interface with other paediatric specialities such as neurology, neonatology, endocrinology, metabolic diseases, genetics and community paediatrics. Certain ophthalmic disorders affecting adults are rare in children and will require the expertise of other sub specialities in ophthalmology (e.g. vitreo-retinal and orbital surgery). In these cases it is imperative that, although the numbers referred may be small, management of these paediatric ophthalmic disorders is child centred, and is viewed in the broader context of general health and development of the child.

The ophthalmic health service is also supported by Orthoptists and Optometrists, who are paramedical health professionals.

An Orthoptist works closely with paediatric Ophthalmologists in the provision of primary and secondary care. An Orthoptist is trained in the diagnosis and management of ocular motility disorders and amblyopia. They often provide the initial contact, assessing the child’s vision and ocular motility when they are referred to the hospital services. In addition they are also involved in screening programs for visual disorders.

An Optometrist is a health professional trained to detect disorders that affect the eye and visual system and correct refractive errors with spectacles. An Optometrist plays an important role in supporting the hospital eye services with the provision of spectacles, contact lens and low visual aids.

Paediatric ophthalmology requires the support of a number of other specialised services, which include:

Ocular electrophysiology Paediatric anaesthesia

48

Neonatology Paediatric critical care/HDU General and community paediatrics Oncology Radiology / Paediatric Neuro-imaging Neurology Ear, Nose and Throat Maxillofacial Genetics

The standards from these specialised services will therefore also apply.

This section represents minimum standards in relation to health services for children with ophthalmic disorders and/or visual impairment. The Royal College of Ophthalmologists document Ophthalmic Services for Children.37

was used to inform the development of these standards and key actions.

The provision of ophthalmic health services occurs at three levels, which include:

1) Primary prevention: preventing visual impairment through screening for disorders that affect the visual system, e.g. retinopathy of prematurity, congenital/ developmental cataract, retinoblastoma, juvenile idiopathic arthritis

2) Secondary prevention: to reduce the impact of established disease by early detection, e.g. congenital cataract, amblyopia, strabismus and refractive disorders

3) Tertiary prevention: maximising the functional vision for untreatable diseases by the provision of visual aids

A robust primary screening programme enabling prompt diagnosis is extremely important to ensure consistency, minimise the impact of false positive results and the provision of a quality service to the child, young person and their family. To deliver high quality services it is essential to address the specific needs of children with eye disease. Visual loss in childhood can significantly impair the progress in physical, emotional and social development. The successful management of children with ophthalmic conditions involves an effective partnership between medical and non-medical health professionals and the parents or guardians of the child.37

A number of children with severe visual impairment or blindness have additional illnesses or other serious sensory, motor or learning impairments. This is nowhere more true than in cortical visual impairment, the most common cause of visual impairment in children. Therefore, it is essential that where a number of health professionals are involved with a child’s eye care effective communication should exist between them and the parents or guardians of the child. Because a child’s visual impairment impacts significantly on their educational achievements, a co-ordinated multidisciplinary team approach through the use of key worker schemes is advocated.7, 38 A list of ophthalmic conditions can be found in Appendix Nine.

49

Where children with these conditions are treated, will depend on the level of anaesthetic service available.

50

Paediatric Ophthalmology Service Models


South and Mid Wales

Currently there are five ophthalmologists nominated as the leads for paediatric ophthalmology who are located individually at the Royal Gwent Hospital (RGH), University Hospital of Wales (UHW) ,Royal Glamorgan Hospital, Princess of Wales Hospital (POW) and Singleton Hospital who provide services as listed in Appendix Nine. Other hospitals have an ophthalmologist who leads paediatric eye services are at West Wales General Hospital and Bronglais General Hospital.

UHW and Singleton hospitals currently provide specialist services that require paediatric anaesthesia for children below the age of one. Some hospitals will refer children below the age of three years to the specialist centres. Lead centres (UHW and Singleton) provide specialist treatment for retinopathy of prematurity, congenital cataracts and glaucoma (UHW).

Where necessary, supra-regional referral will be made to the Birmingham Children’s Hospital (BCH), Great Ormond Street Hospital (GOSH), Royal Liverpool Children’s Hospital (RLCH), Moorfields Eye Hospital and John Radcliffe Hospital.

North Wales

North Wales currently has three consultant ophthalmologists nominated as the leads for paediatric ophthalmology who are located at Ysbyty Gwynedd, Wrexham Maelor Hospital and HM Stanley Hospital.

For the majority of treatment and conditions in Appendix 9 referral is usually made to one of the three Consultant Paediatric Ophthalmologists at RLCH. In some instances, e.g. Retinoblastoma, direct referral is made to BCH but follow-up care is then shared with RLCH. Retinopathy of Prematurity (ROP) screening is provided locally, however treatment is usually provided by the University Hospital of Aintree.

Retinal detachment and congenital cataracts in older children may be dealt with in the DGHs, though younger children are referred to RLCH.

51


South and Mid Wales

To continue current service model with all elements of shared care fully commissioned, and with access to newly developing supra-regional centres as required.

North Wales

To continue current service model with all elements of shared care fully commissioned.

52

Standard 9: Ophthalmology

Rationale: All children and young people requiring specialist management of their ophthalmic condition have access to an ophthalmic surgeon with appropriate training and expertise.36 The delivery of this care is supported by multidisciplinary teams, facilities and equipment, and is applicable to all locations where children and young people are managed.

Key Actions:


Timescale

9.1 All children and young people admitted as an inpatient for ophthalmic care are admitted to a paediatric ward under the joint care of an ophthalmic surgeon and paediatrician. Each Trust has a defined protocol to address this. 7 (KA 2.18)

TrustsLHBs

Less than 1 year

9.2 The surgical team caring for children and young people admitted for day case ophthalmic surgery procedures have access to a senior paediatric advice. Each Trust has a defined protocol to address this.

TrustsLHBs

Less than 1 year

9.3 All children and young people with visual impairment and complex developmental needs, have a nominated key worker to co-ordinate their care and ensure multi-disciplinary liaison. 7 (KA 5.7) This includes referral to the;

educational visual impairment team low visual aid services community child health services social worker.

TrustsLHBsHCW

Less than 1 year

9.4 Children with bilateral reduction in vision are referred to the;

educational visual impairment team low visual aid services community child health services social worker.

TrustsLHBsHCW

1- 3 years

9.5 There is consultant-to-consultant referral of children with an ophthalmic condition as defined in the Welsh Health Circular (2003) 063 8 and referred to specialist services as per Appendix 9.

TrustsLHBsHCW

Less than 1 year

9.6 Referral procedures are in place to ensure prompt and direct referral to the ophthalmic team from other health professionals including optometrists.

TrustsLHBsHCWMCN

Less than 1 year

53

9.7 Appropriate access (as defined by the referring clinician) is available to diagnostic testing and investigations including;

neuro-imaging (with paediatric anaesthetics where necessary

genetic counselling electrophysiology (Electroretinography

(ERG), Electro-oculography (EOG) or Visual-evoked potentials (VEP).

HCWTrustsLHBs

Lead Centres

Less than 1 year

9.8 On the occasions when children are operated upon on general ophthalmic surgery lists, wherever possible children are placed at the beginning of the theatre list.


9.9 After surgery, children and young people are cared for in a dedicated, visually distinct, child- friendly recovery environment and by staff with training and experience in caring for this age group. 7, 17

HCWLHBsTrusts

Less than 1 year


TrustsLHBs

Less than 1 year

9.11 Premature babies with Retinopathy of Prematurity are screened at DGH and lead centres; but treated in a lead centre.

TrustsLHBs

Lead CentresHCW

Less than 1 year

9.12 All ophthalmology outpatient sessions for children and young people have access to a Child Branch/RSCN ophthalmic nurse/ orthoptist with training and experience in caring for this age group (including paediatric life support). 7 (KA 7.15)

TrustsLHBs

Lead CentresHCW

4-10 years

9.13 Each Trust has a nominated lead Ophthalmic surgeon with responsibility for paediatric Ophthalmology services who is a member of the Trust paediatric surgical services committee.

TrustsLHBs

Less than 1 year

9.14 All MDTs include core staff and have access to extended team as identified in Appendix 10.

TrustsLHBs

Lead CentresHCW

1-3 years

9.15 Trusts maintain succession planning for Ophthalmic Surgeons and other members of the multidisciplinary team to ensure that a secondary care children’s ophthalmology service is available to the child and family.

TrustsHCWLHBs

Less than 1 year

54

9.16 Follow-up management of care is delivered as locally as possible, depending on patient choice. Staff providing this care have undergone speciality training. 17

TrustsLHBs

Lead CentresHCWMCN

1- 3 years

9.17 All primary prevention ophthalmic screening is undertaken in line with recognised visual screening evidence and Royal College guidance. 37

TrustsLHBs

1-3 years

9.18 Newly diagnosed children with a complex disability have access to cortical visual impairment disability screening.

LHBsTrustsHCW

1-3 years

9.19 Health professionals should ensure that children, young people, their parents or carers receive information about the child’s eye condition and sources of support. This should be easily understandable and should be supplemented with written information.7,39,40,41,42

TrustsLHBs

1-3 years

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2, 4, 6,11,12,22 and 24.

55

Paediatric Plastic Surgery Services for the Children and Young People of Wales

There are five main areas of plastic surgery;

Treating the consequences of: Trauma and burns Cancer (i.e. skin, head and neck, breast and sarcoma) Congenital anomalies (including skin, limb, breast, face and

urogenital) Tissue infections or degenerative conditions such as arthritis The normalisation and improvement of appearance.

Misleadingly, plastic surgery is sometimes used as a synonym for cosmetic surgery. Whilst plastic surgery does indeed include some purely cosmetic procedures, it has a much broader scope than this. Plastic surgery refers to procedures which fall into a range of different sub-specialities from hand injuries to cleft lip and palate, rhinoplasty to breast reconstruction.

Nearly all other surgical disciplines are associated with a specific anatomical area, be that bones or the brain. Plastic Surgeons on the other hand work in many areas of the body, bringing a range of techniques and procedures to deal with a host of conditions. In effect, Plastic Surgeons are unified by their discipline and problem-solving skills rather than being defined by an anatomical area. Plastic Surgeons often collaborate with colleagues in other specialities to help provide the best outcome for their patients.

Reconstructive Surgery

This is plastic surgery undertaken to restore function and appearance following cancer, injury, infection or birth anomaly, for example breast reconstruction following mastectomy, hand surgery following injury at work or repair of a child’s congenital hand anomaly.

All reconstructive surgery has an aesthetic element and a Plastic Surgeon undertaking a reconstructive procedure will always be mindful of ‘normalising’ the patient’s appearance and ensuring the outcome is as aesthetically pleasing as possible.

Aesthetic Surgery

As a result of their training and the nature of their work plastic surgeons will be mindful of aesthetic considerations whatever the procedure that is being carried out. However aesthetic surgery is that undertaken purely because the patient has a cosmetic concern.

56

Paediatric Plastic Surgery Service Models


South and Mid Wales

The Welsh Centre for Burns and Plastic Surgery (WCBPS) is based at Morriston Hospital, Swansea. It is the only provider in Wales with eleven consultant plastic surgeons providing an integrated burns, plastic and reconstructive surgery service. All plastic surgery is commissioned by Health Commission Wales through a single long-term agreement (LTA) with Abertawe Bro Morgannwg University NHS Trust which then enters into service level agreements (SLA) with other Trusts to provide outreach facilities. Specific children’s services include treatment of congenital anomalies of the ear (in conjunction with maxillofacial surgeons and prothesetists), facial palsy, hand and upper limb anomalies, skin, breast, and trunk anomalies, hypospadias, as well as injury through trauma or infection to the face, trunk and limbs with a particular emphasis on hand surgery.

The service catchment extends to Aberystwyth in the West, South and Mid Wales as well as South East Wales. Some elective referrals are received from across the border from England. The WCBPS has a policy of providing care as near patients’ homes as possible and achieves this through the provision of outpatient clinics, ward consultations and day case surgery across their catchment area.

Outpatient clinics are held at nearly all DGHs in South Wales (with the exception of Bronglais General Hospital) and support is provided to all Accident and Emergency (A&E) and minor injury units. Annually, the WCBPS sees in excess of 700 new patients and 2800 follow-up paediatric outpatients in Morriston Hospital and peripheral hospitals.

The WCBPS performs approximately 500 elective and 700 emergency operations on children annually. All inpatient and emergency operations Take place at Morriston Hospital. Surgery on children and young people is performed on an ambulatory /day case basis when possible. This is currently undertaken at Morriston Hospital, Singleton Hospital, Llandough Hospital and Aberdare General Hospital. Wherever possible patients are seen and treated near their home by a plastic surgeon with the appropriate sub-specialisation, however this is not always possible and some patients have to travel further for this purpose.

North Wales

Plastic surgery needs at RLCH historically were met by consultants at the regional plastic surgery unit at Whiston, however this model is currently being replaced by one where the RLCH unit is becoming self sufficient. Since 2004, there has been one full time Plastic Surgeon at RLCH with services supplemented by four surgeons visiting on a sessional basis. Currently, there are two full time Plastic Surgeons with funding approval for a third post and

57

augmentation of the sessional commitments of visiting surgeons is underway resulting in the equivalent of a fourth post. This team is supported by six middle and junior grade doctors and a Surgical Care Practitioner who delivers trauma care. The team also hosts an international vascular anomalies specialist several times a year to support the vascular anomalies service. This team provides comprehensive care for the plastic surgery needs of children on a regional and supra regional basis, offering the full range of plastic surgery specialisms to our patients.

The ultimate aim is to house the unit in a combination of a specialist plastic surgery and specialist burns units, with reconfiguration of the existing burns unit. This will ultimately result in one of only two stand-alone paediatric plastic surgery units in the UK.


South and Mid Wales

Health Commission Wales (HCW) has a repatriation policy, repatriating care from English providers. This is likely to see patients from parts of Powys and East Wales, who currently receive their care in BRHC, Hereford and BCH being seen and treated in South Wales. It is anticipated that this will require the establishment of further outreach services in Powys from Swansea to ensure equity of access. The WCBPS has been designated as the ‘gatekeeper’ for highly specialised plastic surgery referrals to designated English centres .

The WCBPS is expected to establish a brachial plexus injury service for children and adults: the former in partnership with an English provider. It is also seeking to augment the paediatric hypospadias reconstructive surgery service currently provided, and to appoint to a consultant post with a dedicated general paediatric plastic surgery interest.

The WCBPS will seek to expand provision of outreach to improve access to its services for children, young people and their parents and carers in conjunction with DGHs across the region.

North Wales

The RLCH Department of Plastic Surgery aims to continue to provide for the needs of children from North Wales. In addition to the current provision of general plastic surgery services, hand surgery, lower limb reconstruction, acute and reconstructive burns surgery and the combined vascular anomalies team, the department aims to recruit surgeons with a special interest in hypospadias surgery and facial reanimation. Together with cleft and craniofacial services provided by their appropriate MCNs, this development will provide a comprehensive plastic surgery service for all paediatric needs. A dedicated North West Paediatric Intensive care Transport team has been commissioned for the North West – enhancing response times for intensive care.

58

Standard 10: Plastic Surgery

Rationale: All Children and young people who require plastic surgery have their care delivered by Plastic Surgeons with training and expertise in the management of plastic surgery in children. The delivery of this care is supported by appropriately trained multi-disciplinary teams, facilities and equipment and is applicable to all locations where children and young people are managed. All children and young people have access to ongoing community follow up care when specialist intervention is no longer required.

Key Actions:


Timescale

10.1 Access to multidisciplinary support is available to all pregnant women following diagnosis of a congenital anomaly.

HCWLHBsTrusts

Less than 1 year

10.2 All pregnant women who receive a pre-natal diagnosis of a congenital anomaly are seen by a specialist consultant plastic or maxillofacial surgeon.

HCWLHBsTrusts

Less than 1 year

10.3 All children and young people admitted as an in-patient for a plastic surgery procedure are admitted under the joint care of a Consultant Plastic Surgeon and Consultant Paediatrician. Each Trust has a defined protocol to address this.

HCWLHBsTrusts

Less than 1 year

10.4 All children and young people undergoing specialist plastic surgical care (out-patient and in-patient) (Appendix 11) are under the care of a named Consultant Plastic Surgeon.

HCWLHBsTrusts

Less than 1 year

10.5 The lead centre surgical and anaesthetic team manage the care of children and young people who require specialised plastic surgery.

HCWLHBsTrusts

Less than 1 year

10.6 On-site paediatric services are available 24 hours a day for consultation and assistance for any child requiring surgical care.

TrustsLHBs

Less than 1 year

10.7 Child Branch/RSCN staff involved in the care of children and young people requiring plastic surgery have specialist training in plastic and reconstructive surgical care. At least one such specialist nurse should be present on each nursing shift.

HCWLHBsTrusts

1-3 years

59

10.8 Therapists involved in the care of children and young people requiring plastic surgery have received paediatric training. The paediatric therapist has access to therapists trained in plastic surgery and Child Branch/RSCN nurses.

HCWLHBsTrusts

1-3 years

10.9 Wherever possible, children and young people are operated on as a day case provided the child/young person’s condition permits, and suitable facilities are available.18

TrustsLHBs

Less than 1 year

10.10 Whenever possible children are placed at the beginning of a theatre list. KA 3.18,


10.11 All day case recovery areas caring for children have access to a Child Branch/RSCN nurse at all times.

HCWLHBsTrusts

Less than 1 year

10.12 Play specialists are employed in all appropriate areas, and at all stages of this service.7 (KA 7.16),17 (KA 2.8)

HCWLHBsTrusts

4-10 years

10.13 All members of the multidisciplinary team have dedicated time and funding to access specialist and other professional activities to develop their knowledge and maintain their expertise through continuing professional development (CPD). This may be on a UK wide basis.

LHBsTrusts

1-3 years

10.14 All Consultant Plastic Surgeons receive Paediatric Life Support (PLS) training.

HCWLHBsTrusts

1-3 years

10.15 Plastic Surgeons receive PLS training early in their Specialist training programme.


10.16 Within each Trust carrying out plastic surgery on children and young people there is a designated clinical psychologist as part of the MDT.

TrustsLHBsHCW

Less than 1 year

10.17 There is a senior person within the Trust who leads a children’s services committee. This committee must include the lead Plastic Surgeon for children and young people.

TrustsLHBs

Less than 1 year

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2,11,12,22 and 24.

60

Paediatric Burns Services for the Children and Young People of Wales

Burn injuries in children can range from minor to severe, life threatening injuries. All need appropriate treatment by those experienced in their management, as even if the injury is not life threatening, it can still pose a significant threat to the appearance and function of anatomical areas. Burn surgeons, working within the Burns multidisciplinary team are uniquely placed to deal with the Burn injury and also deal with the functional and aesthetic reconstruction of critical anatomical areas. This may occur shortly after the original injury, or as part of a series of planned reconstructive procedures.

The National Burn Care Report (2001) 43 includes the care of children and is endorsed by the Royal Colleges. Following publication of the report, Burn Care standards were developed to which burn centres and units have to comply. Based on National Paediatric Burn Data it is thought that three or four Paediatric Burn Centres will be required for England and Wales. These centres will treat the most severely injured paediatric burn injuries as well as their own catchment population.

The criteria to be a Paediatric Burn Centre require the Paediatric Burns Centre to be co-located with the paediatric intensive care unit (PICU). The intention is that in England there will be a number of designated Paediatric Burns Centres. Paediatric Burn Units will continue to treat children from their local catchment area with the exception of the severely burned child. Exceptionally children cannot be cared for at Morriston Hospital if they require paediatric intensive care, but on the whole Morriston Hospital will continue to deal with most children and young people’s needs.

The Welsh Burns Centre based at Morriston Hospital, Swansea, treats approximately 380 children per annum (2007) of which 50% required admission. Burn prevention is an important role of the Welsh Burns Centre. Nursing staff are involved in prevention campaigns involving school children in an endeavour to reduce the incidence of burn injury.

61

Paediatric Burns Service Model


South and Mid Wales

The Welsh Burns Centre in Swansea has some of the best facilities in the UK with up to ten designated intensive care/high dependency unit (ITU/HDU) cubicles, (two of which are specifically for children), telemedicine and telemetry links with PICU at UHW, and a ten bedded low dependency unit. There is also a playroom, children’s dressing room and both daytime and overnight accommodation for parents and carers.

The Welsh Burns Centre has three dedicated Consultant Burns and Plastic Surgeons who lead the multidisciplinary team. This team has extensive experience in caring for children with all levels of severity of burn injury. Care for these patients also involves paediatric input from a consultant paediatrician. For the one or two children per annum who have to be transferred out for PICU support, the Welsh Burns Centre provides ongoing care when they no longer require PICU care.

The catchment area for the burns centre incorporates all of South Wales with referrals also received from England through the National Burn Bed Bureau. The Welsh Burns Centre works as part of a wider network with the South West and South Central England (SWUK). All levels of burn care in children and young adults are provided in Swansea with the exception of young children requiring paediatric intensive care support.

Out-patient care is provided through specialised outpatient dressings clinics in the Welsh Burns Centre and multi-disciplinary outpatient clinics held across the region. There is also a therapist and nurse-led outreach service for South Wales and a school reintegration service for school aged children.

Following discharge all children are sent appointments to be reviewed by a member of the Burns outreach team who consist of a senior burns nurse and an occupational therapist. Multidisciplinary follow-up clinics are held in hospitals in Wales where children are seen by surgeons and the outreach team for advice on scar management. Children are followed up as clinically indicated.

The Welsh Burns Centre has established a Children’s Burn Camp. This has been developed by nursing staff on the paediatric Burns and Plastic Surgery ward with help from appropriately screened volunteers from the nurses, medical staff and non-healthcare staff personnel. All children once they reach six or seven years of age, independent of when they sustained their burn injury, have the opportunity to attend these camps. These consist of three camps per year and approximately six separate days of fun and activity to help those children who have been burned.

62

North Wales

The RLCH treats all levels of burn injury in children, including those severely injured who require PICU. The RLCH treats approximately 180 burned children per year as inpatients. These children are drawn from both England and Wales. The catchment area for Wales includes the whole of the North Wales region and extends down as far as Aberystwyth. Severely burned children are also admitted to RLCH from anywhere within the UK by the Burn Bed Bureau. Between January and June 2008, six patients required paediatric intensive care.

Burns patients from North Wales go to RLCH which has an eight-bedded ward for burns and plastic surgery patients that includes two high-dependency cubicles. State of the art facilities will be provided by the creation of a brand new paediatric burns unit with five cubicles, which has been approved and funded. The unit will be adjacent to theatres and PICU and meets National burn care standards. 44

The burns team comprises two Consultant Burns Surgeons, a permanent staff grade surgeon, intensivists, anaesthetists and a physiotherapist with support from occupational therapy, dietitians, microbiologists, the pain team and the psychology department. There is funding for a third full time consultant with some commitment to burns. All members of the multi-disciplinary team are experienced in caring for the burned child. A paediatrician is involved in the care of all neonates and in children where non-accidental injury is suspected.

Currently, discharged patients are repatriated if they live out of area, or are reviewed in follow up clinics in RLCH. There are two dressing clinic cubicles for this purpose and larger dressing changes are carried out on the ward. RLCH also provide scar management clinics and a pressure garment service.


South and Mid Wales

The SWUK network has designated Morriston Hospital as its adult burns centre (serving a population of 10 million) and has identified BCH as the likely supra-regional paediatric burns centre at least until 2009. It is anticipated that only children requiring highly specialised care would be referred out to BCH (currently 1-2 per annum), with the majority remaining at Morriston Hospital.

North Wales

Currently, RLCH provides care for burned children of all severities, including those requiring PICU. RLCH is part of the North West Network for burns, which is currently meeting on a regular basis to establish working patterns to ensure continuing best practice.

63

There are a number of options which include RLCH continuing to offer high level service to all burns, including those that are considered complex and severe, and require PICU. This option is supported by RLCH.

In the future, it is anticipated that there will be closer working relationships with Manchester Children’s Hospital (MCH), including shared discussion of difficult cases, potentially joint on call commitments and collaboration in research.

It is hoped that an outreach service will be established, including peripheral clinics in the North Wales catchment area to enable children to attend follow up and scar management clinics in their local area.

There is in existence a Paediatric Critical Care Interface Group for the North West that include Wales, which some years ago produced a consensus guideline on the management of burns. In the light of the National Burn Care Review 43 and the establishment of the North West Network for Burns, this group may need to reconvene and revise the guideline.

64

Standard 11: Burns

Rationale: All children and young people who require treatment for Burns receive care delivered and supported by appropriately trained multi-disciplinary teams, facilities and equipment and applicable to all locations where children and young people with burns are managed. All children and young people have access to ongoing community follow up care when specialist intervention is no longer required. Key Actions:


Timescale

11.1 Services for children and young people in Wales are provided in accordance with the Welsh Burn Standards. 44

HCWLHBsTrusts

Less than 1 year

11.2 All children and young people admitted as an inpatient for a burns surgical procedure are admitted under the joint care of a Consultant Plastic/Reconstructive Surgeon and Consultant Paediatrician. Each Trust has a defined protocol to address this.

HCWLHBsTrusts

Less than 1 year

11.3 All areas involved in the care of children and young people with burn injuries include access to Child Branch/RSCN nurses.

HCWLHBsTrusts

Less than 1 year

11.4 An agreed care pathway is in place for primary transfer of care for children who will not be retrieved by a specialist PICU team. The referring Trust staff will make arrangements for transfer.

HCWLead Centres

MCNAmbulance

Trusts

Less than 1 year

11.5 An agreed care pathway is in place for supra-regional retrieval of children and young people.

HCWLead Centres

MCNAmbulance

Trusts

Less than 1 year

11.6 All therapists involved in the care of children and young people with burn injuries are paediatric trained, and use recognised standards in their management of care.45

HCWLHBsTrusts

Less than 1 year

11.7 All appropriate members of the multidisciplinary team receive PLS training.

HCWLHBsTrusts

1-3 years

11.8 Plastic Surgeons receive PLS training early in their specialist training programme.


65

11.9 All medical and nursing staff involved in caring for children with burn injuries have completed the Emergency Management of Severe Burns (EMSB) course.

HCWLHBsTrusts

1-3 years

11.10 There is a senior person within the Trust who leads a children’s services committee. This committee must include the lead Plastic Surgeon for children and young people.

TrustsLHBs

Less than 1 year

11.11 Play specialists are employed in all appropriate areas, and at all stages of this service.7 (KA 7.16),17 (KA 2.8)

HCWLHBsTrusts

4-10 years

11.12 All members of the multidisciplinary team have dedicated time and funding to access specialist and other professional activities to develop their knowledge and maintain their expertise through continuing professional development (CPD). This may be on a UK wide basis. 17

LHBsTrusts

1-3 years

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2,11,12,22 and 28.

66

Paediatric Maxillofacial Services for the Children and Young People of Wales

Maxillofacial surgeons in the UK are qualified in both dentistry and medicine. They are required to have intensive training and must pass fellowship examinations of The Royal College of Surgeons in Dentistry, General Surgery and Maxillofacial Surgery. Maxillofacial surgeons specialise in the diagnosis and treatment of any disease affecting the mouth, jaws, face and neck. This includes surgical dentistry (impacted teeth, dental cysts, dental implants etc), injuries to the face, salivary gland problems, cancers of the head and neck, facial deformity, oral medicine, (ulcers, red/white patches, mouth cancer), facial pain and temporomandibular joint disorders.

Due to the nature of the work, Oral and Maxillofacial Surgeons (OMFS) often work alongside a variety of specialists in other fields such as ENT surgeons, clinical oncologists, plastic surgeons, orthodontists, restorative dentists, radiologists and neurosurgeons. OMF Surgeons collaborate with paediatricians in the diagnosis and treatment of cervical and orofacial infections and neoplasia, and provide treatment for babies and children with craniofacial deformity including cleft lip and palate, as part of a multi-disciplinary team. Orthodontists and Maxillofacial surgeons work closely together in the management of jaw deformity.

Maxillofacial Surgery services for children and young people in Wales provide treatment of all conditions of the mouth, face and jaws whether those be injuries of the facial bones and soft-tissues, infections especially spreading infections of the tissue spaces in the face, tumours or facial and jaw deformities. Restrictions on provision of general anaesthesia outside hospital settings has resulted in some increased demand for these services in maxillofacial departments, especially for the extraction of teeth and for other dento-alveolar surgery which requires a general anaesthetic. Most of this is carried out on a day stay basis unless the child is medically compromised.

Thus a range of oral and maxillofacial surgical operations are carried out on children and young adults in an outpatient setting - either under local anaesthesia with or without conscious sedation, or under day case general anaesthesia. Examples include: pre-implant surgery placement of dental/facial implants, removal of impacted teeth, jaw cysts and minor soft tissue procedures on the head and neck.

More major operations, for example those for cleft lip and palate, craniofacial disorders, salivary gland disease, trauma, facial deformity or cancer, are carried out on an inpatient basis under general anaesthesia.

67

Paediatric Maxillofacial Service Models


South and Mid Wales

Four centres in South Wales provide maxillofacial in-patient and operating services, namely Morriston Hospital, University Hospital of Wales (UHW), Royal Gwent Hospital (RGH) and Prince Charles Hospital (PCH). Only at Morriston Hospital is there clear sub-specialisation in paediatric maxillofacial surgery by the two surgeons who also support the cleft service. The consultant surgeon carrying out the secondary cleft surgery also has a special interest in the management of paediatric congenital craniofacial anomalies and deformities and a further newly appointed surgeon is now shadowing that part of the service as succession planning.

The seven Maxillofacial Surgeons based at Morriston Hospital see children with congenital deformities in their own clinics, but largely cross-refer to the surgeon with a special interest.

Multi-disciplinary clinics are held by the surgeon with a special interest at Morriston Hospital, UHW and RGH. A paediatric craniofacial clinic at Morriston Hospital includes a consultant in paediatric neurology and a consultant in medical genetics with a special interest in dysmorphology and a consultant orthodontist. Cranio-synostosis cases which require intra-cranial surgery now are referred to Birmingham Children’s Hospital (BCH) but the Swansea team has considerable experience in this field following several years of performing this surgery successfully in Morriston. Consequently it regularly receives paediatric referrals for diagnosis and sometimes follows up cases at the request of BCH.

Craniofacial anomalies, which do not require neurosurgical intervention, are managed at Morriston Hospital. They include more than 100 cases of hemi-facial microsomia and more than fifteen cases of Treacher Collins Syndrome, most of whom will require staged surgical interventions throughout childhood up to and including maturity. The unit has fourteen years experience of distraction osteogenesis (in the Orthopaedic protocols referred to as ‘the Ilizarov method’) in these cases.

A further regular multi-disciplinary clinic is held for the management of microtia (congenitally or acquired absent or deformed ears) and other rarer facial defects (e.g. of the orbit or nose, usually because of tumours), which may benefit from prostheses and implants. Two Maxillofacial Surgeons, including the Paediatric Surgeon with a special interest, a Plastic Surgeon with an interest in ear construction and three specialised Maxillofacial Prosthetists attend this clinic which see children below one year of age, but usually will not commence treatment before three years of age.

All the four units carry out orthognathic surgery (corrective jaw osteotomies) on young people but this type of surgery is generally restricted to adolescents

68

from 16 years of age. This work is performed following joint assessment with orthodontists who usually will prepare the patients for surgery with orthodontic braces to detailed treatment plans. North Wales

Paediatric maxillofacial surgery is currently provided at three DGHs in North Wales. Inpatient paediatric maxillofacial surgery is limited to Ysbyty Glan Clwyd and Wrexham Maelor Hospital. Two Oral and Maxillofacial Surgeons have sub-specialist interests in paediatric maxillofacial surgery - one has an interest in facial disfigurement and orthognathic surgery, whilst the other surgeon has an interest in facial disfigurement and cleft lip and palate surgery. Multidisciplinary facial deformity clinics are held at each of the DGHs every two months. Craniofacial surgery and NSCAG listed cases are referred to the supra-regional craniofacial unit at RLCH.

69


South and Mid Wales

Increasing service position in a lead centre is likely especially for the management of craniofacial deformity. Provision here is strengthened by the presence of the South and Mid Wales Cleft service on the Morriston Hospital site. The current service model as described above is likely to continue but will need strengthening especially in relation to physical facilities and therapy support especially in Clinical Psychology.

North Wales

The current service model is likely to continue in the sense that more orthognathic surgery (correction of jaw deformity) for adolescents in particular is likely to be carried out.

70

Standard 12: Maxillofacial

Rationale: All children and young people requiring management of their maxillofacial condition have access to a maxillofacial surgeon with appropriate training and expertise. The delivery of this care is supported by appropriately trained multidisciplinary teams, facilities and equipment and is applicable to all locations where children and young people are managed. All children and young people have access to ongoing community follow up care when specialist intervention is no longer required.

Key Actions:


Timescale

12.1 All parents who receive a prenatal diagnosis of a congenital anomaly are offered referral to an appropriate Consultant Maxillofacial Surgeon or Plastic Surgeon.

HCWLHBsTrusts

Less than 1 year

12.2 All pregnant women who receive a pre-natal diagnosis of a congenital anomaly are seen by a specialist Consultant Maxillofacial Surgeon or Plastic Surgeon.

HCWLHBsTrusts

Less than 1 year

12.3 All parents who receive pre-natal diagnosis of a congenital anomaly are offered antenatal referral to genetic services.17 (KA 1.2)

HCWLHBsTrusts

Less than 1 year

12.4 Access to multidisciplinary support is available to all parents following diagnosis of a maxillofacial congenital anomaly.

HCWLHBsTrusts

Less than 1 year

12.5 Parents and siblings of patients who have a congenital anomaly are offered referral to genetic services.

HCWLHBsTrusts

Less than 1 year

12.6 All children and young people admitted as an inpatient for a maxillofacial surgical procedure are admitted under the joint care of a Consultant Maxillofacial Surgeon and Consultant Paediatrician. Each Trust has a defined protocol to address this. 17

HCWLHBsTrusts

Less than 1 year

12.7 Children and young people are treated by a maxillofacial surgeon who has an appropriate level of training and experience and is supported by a multidisciplinary team and working as defined by the MCN. (Appendix 12)

HCWLHBsTrusts

Less than 1 year

71

12.8 On site paediatric services are available 24 hours a day for consultation and assistance in the care of any child who is a surgical in-patient.

TrustsLHBsHCW

Less than 1 year

12.9 Any child with a syndrome relevant to maxillofacial surgery has a general paediatric review by a local Consultant Paediatrician prior to referral to a Maxillofacial Surgeon.

HCWLHBsTrusts

Less than 1 year

12.10 Wherever possible, if suitable surgical facilities are available, and the child or young person’s condition permits, children are operated on as a day case.22

TrustsLHBs

Less than 1 year

12.11 Whenever possible children are placed at the beginning of a theatre list.

TrustsLHBsHCW

Less than 1 year

12.12 Day case recovery areas have access to a Child Branch/RSCN nurse at all times. 17

HCWLHBsTrusts

Less than 1 year

12.13 Adolescents undergoing maxillofacial surgery are cared for in age appropriate environments. 7 (KA 2.18)

TrustsLHBsHCW

Less than 1 year

12.14 Play specialists are employed in all appropriate areas, and all stages of this service.7 (KA 7.16), 17 (KA 2.8)

HCWLHBsTrusts

4- 10 years

12.15 All members of the multidisciplinary team have dedicated time and funding to access specialist and other professional activities to maintain their knowledge and expertise through continuing professional development (CPD). This may be on a UK wide and international basis. 17

LHBsTrusts

1-3 years

12.16 All nursing staff involved in the care of children and young people undergoing maxillofacial surgery are Child Branch/RSCN trained, and have speciality training that includes airway management, tracheostomy care and feeding problems.

HCWTrustsLHBs

1-3 years

12.17 Therapists involved in the care of children and young people requiring maxillofacial surgery have appropriate specialist training.

HCWLHBsTrusts

1-3 years

12.18 All Consultant Maxillofacial Surgeons have PLS training.

HCWLHBsTrusts

1-3 years

72

12.19 Trainee Maxillofacial Surgeons receive PLS training incorporated into their training programme.


12.20 Within each trust carrying out surgery on facial disfigurements in children and young people there is a designated Clinical Psychologist as part of the MDT.

TrustsLHBsHCW

Less than 1 year

12.21 Any child with a facial disfigurement, or perceived disfigurement and their family are offered referral to a psychologist and seen within 14 weeks of referral.36

HCWLHBsTrusts

4-10 years

12.22 Maxillofacial MDT receives training in psychological implications of facial disfigurement.

TrustsLHBsHCW

1-3 years

12.23 Children and young people with dento-facial anomalies have access to hospital based consultant orthodontic services as part of the MDT.

TrustsLHBsHCW

Less than 1 year

12.24 All children and young people under maxillofacial care have access to General or Community Dental Services, and when necessary a specialist Paediatric Dentist.

TrustsLHBsHCW

Less than 1 year

12.25 Children with acute dysphagia and/or communication problems are seen within 14 weeks of referral. 36

TrustsLHBs

1-3 years

12.26 Children requiring routine Speech and Language care are seen within 14 weeks of referral, or within a 26 week ‘total wait’ when part of MDT ‘Referral to Treatment Time’.36

TrustsLHBs

1-3 years

12.27 Each Trust has a nominated lead Maxillofacial Surgeon with responsibility for paediatric Maxillofacial services who is a member of the Trust paediatric surgical services committee.

TrustsLHBs

Less than 1 year


73

Paediatric Cleft Lip and Palate Services for Children and Young People of Wales

Cleft Lip and/or Palate is one of the more common congenital anomalies and the most common craniofacial anomaly with an incidence in Wales of approximately 1 in every 630 live births. After criticism of the quality of cleft results, cleft services in the UK were reorganised following the publication of the CSAG report.46 Surgeons should treat 30-40 new cases per year and each centre approximately 100 new cases per year.

Guidance on how services should now be delivered are given in HSC 1998-238 47 and have resulted in approximately 9 centres in the UK with surgery being carried out now in just 17 hospitals. Surgery on young babies to repair the lip and/or palate is now being carried out in Wales only in Swansea.

74

Paediatric Cleft Lip and Palate Service Models


South and Mid Wales

The designated cleft service for South and Mid Wales is provided at Morriston Hospital, Swansea by a multi-disciplinary team including two Cleft Surgeons, one for surgery primarily of the very young child and one for surgery mainly of the older child and adolescents. Both of these surgeons are also Oral and Maxillofacial Surgeons. Cleft children are all routinely followed up for a minimum of 20 years and the service has a life time commitment to the patient. Outpatient clinics are held at Morriston Hospital and University Hospital of Wales (UHW) and by one of the surgeons at Royal Gwent Hospital (RGH) and currently Nevill Hall Hospital. The surgery is provided at Morriston Hospital with the exception of a small number of cases per year (1-3) who are better managed in UHW or Bristol Royal Hospital for Children (BRHC) due to major co-morbidity and the proximity of a Paediatric Intensive Care Unit (PICU).

The cleft service to South and Mid Wales is part of a two-centre MCN with Frenchay Hospital in Bristol which treats the cleft patients for the South West of England. This arrangement exists because neither centre has the critical mass of cleft cases to function by itself under the nationally reorganised services for cleft care which require approximately 100 new births per year. The two teams provide the services separately but there is considerable collaboration especially with audit. Each service is led by a Clinical Director (CD) and the two clinical directors lead the network in collaboration. The CD for South Wales is appointed jointly by Abertawe Bro Morgannwg University NHS Trust (ABM University Trust) and Health Commission Wales (HCW).

The service works broadly to nationally (UK) agreed standards as documented in a Clinical Specification document of thirty-two Standards of Care for the SW/SWE network 48 and in a structure laid down in a Network management document.49 These documents were drawn up with and were approved by ABM University Trust and HCW (or rather by their predecessors). Wales and the South West have scored positively when audited, most recently in a Performance Review by the commissioners for South West England and Wales.

The cleft service also provides multi-disciplinary care for children with non-cleft velo-pharyngeal insufficiency (VPI), as laid down by the National Specialty Definitions.50 This is an increasing service of detailed assessment and investigation and some of these children will then proceed to surgery to correct these speech anomalies.

North Wales

Cleft lip and palate services are provided by the North West, Isle of Man and North Wales (NWNW) Cleft Lip and Palate Network. One of the four

75

consultant Cleft Surgeons attached to the network has primary responsibility for children born with cleft lip and/or palate in North Wales. The NWNW service is a single MCN with two main surgical centres at RLCH and Booth Hall Children’s Hospital, Manchester. RLCH is the hub centre for North Wales patients with outreach clinics being provided on a monthly rotational basis at Ysbyty Gwynedd, Ysbyty Glan Clwyd and Wrexham Maelor Hospital. All early surgery on North Wales children with clefts is performed at RLCH by a single surgeon. There is a facility to carry out surgery on older children in Wrexham Maelor Hospital and Ysbyty Glan Clwyd performed by the RLCH Cleft Surgeon covering North Wales.

The NWNW Cleft Lip and Palate Network is governed by standards 51 that were developed nationally in the UK following the 1995 CSAG report 46 and is responsible to a Network Board represented by clinicians and purchasers including Health Commission Wales.

UK standards are used in North Wales too. Each network produces their own standards to meet the national requirements. North Wales produced their own standards derived from the CSAG report.

76


South and Mid Wales

Continue the South Wales Cleft Team as part of the SWSW MCN for cleft lip and palate but strengthen the resources to enable the service to meet the CSAG46 standards and to meet the standards of HSC 1998-238.47

North Wales

Continue as current service model but with all elements of the service fully commissioned.

77

Standard 13: Cleft Lip and Palate

Rationale: All children and young people requiring management of their Cleft Lip and Palate condition have access to a Cleft Lip and Palate Surgeon with appropriate training and expertise. The delivery of this care is supported by appropriately trained multidisciplinary teams (MDTs), facilities and equipment and is applicable to all locations where children and young people are managed. All children and young people have access to ongoing community follow up care when specialist intervention is no longer required.

Key Actions:


Timescale

13.1 All parents who receive a prenatal diagnosis of a cleft or other congenital craniofacial anomaly are offered referral to the Cleft Team and to a Consultant Cleft Surgeon.

HCWLHBsTrusts

Less than 1 year

13.2 All pregnant mothers who receive a pre-natal diagnosis of a cleft or other congenital craniofacial anomaly are seen by the Cleft Team and a Consultant Cleft Surgeon.

HCWLHBsTrusts

Less than 1 year

13.3 All parents who receive pre-natal diagnosis of a congenital anomaly are offered antenatal referral to genetic services. 17 (KA1.2)

HCWLHBsTrusts

Less than 1 year

13.4 Access to multidisciplinary support is available to all parents following diagnosis of any cleft or maxillofacial congenital anomaly. (Appendix 12)

HCWLHBsTrusts

Less than 1 year

13.5 All parents and siblings of patients who have a congenital anomaly are offered referral to genetic services. 17

HCWLHBsTrusts

Less than 1 year

13.6 Any child with a syndrome relevant to the cleft lip and palate service has a general paediatric review by a local Consultant Paediatrician prior to surgery by a cleft lip and palate surgeon.

HCWLHBsTrusts

Less than 1 year

13.7 All children and young people admitted as an inpatient for a surgical procedure are admitted under the joint care of a Consultant Cleft Surgeon and Consultant Paediatrician. Each Trust has a defined protocol to address this.

HCWLHBsTrusts

Less than 1 year

78

13.8 Children and young people are treated by a designated Cleft Surgeon who has an appropriate level of training and experience, and is supported by a multidisciplinary team. (Appendix 12)

HCWLHBsTrustsMCN

Less than 1 year

13.9 On site paediatric services are available 24 hours a day for consultation and assistance in the care of any child who is a surgical inpatient.

TrustsLHBs

Less than 1 year

13.10 Wherever possible, if suitable surgical facilities are available, and the child or young person’s condition permits, children are operated on as a day case.

TrustsLHBs

Less than 1 year

13.11 All day case recovery areas have access to a Child Branch/RSCN nurse at all times.

HCWLHBsTrusts

Less than 1 year

13.12 Play specialists are employed in all appropriate areas, and all stages of this service.7 (KA 7.16), 17 (KA 2.8)

HCWLHBsTrusts

4-10 years

13.13 All members of the MDT have dedicated time and funding to access specialist/other professional activities to maintain their knowledge and expertise through continuing professional development (CPD). This may be on a UK wide/international basis. 17

LHBsTrusts

1-3 years

13.14 Nursing staff involved in the care of children and young people undergoing cleft lip and palate surgery are Child Branch/RSCN and have speciality training that includes airway management, tracheostomy care and specialist feeding care.

HCWTrustsLHBs

1-3 years

13.15 Therapists involved in the care of children and young people with cleft of the lip and/or palate or non-cleft velo-pharyngeal insufficiency (VPI) have appropriate specialist training.

HCWLHBsTrusts

1-3 years

13.16 All Consultant Cleft Surgeons have Paediatric Life Support training (PLS).

HCWLHBsTrusts

1-3 years

13.17 Trainee programmes for Cleft Surgeons incorporate PLS training.


13.18 Each trust that performs surgery on children and young people for facial disfigurement has a designated Clinical Psychologist available as part of the MDT.

TrustsLHBsHCW

Less than 1 year

79

13.19 Members of the cleft lip and palate MDTs receive training in the psychological implications of facial disfigurement.

TrustsLHBsHCW

1-3 years

13.20 Children with a cleft lip and palate or perceived disfigurement and their family are offered referral to a psychologist and seen within 14 weeks of referral, or within a 26 week ‘total wait’ when part of MDT ‘Referral to Treatment Time’. 36

HCWLHBsTrusts

4-10 years

13.21 Children with acute dysphagia and/or communication problems are seen within 14 weeks of referral.36

TrustsLHBs

1-3 years

13.22 Children requiring routine Speech and Language care are seen within 26 weeks total wait by December 2009.36

TrustsLHBs

1-3 years

13.23 Children and young people with dento-facial anomalies have access to hospital based consultant orthodontic services as part of the MDT.

TrustsLHBsHCW

Less than 1 year

13.24 All children and young people under cleft lip and palate care have access to General or Community Dental Services, and when necessary a specialist paediatric dentist.

TrustsLHBsHCW

Less than 1 year

13.25 Each Trust has a nominated lead Cleft, Surgeon with responsibility for paediatric cleft, lip and palate services who is a member of the Trust paediatric surgical services committee.

TrustsLHBs

Less than 1 year


80

Sections 76, 77 and 81 of the Government of Wales Act 2006 provide a basis for our equality work. The National Assembly for Wales is under statutory duties to aim to ensure that its business is conducted, and its functions exercised, with due regard to the principle that there should be equality of opportunity for all people. As the majority of the National Assembly’s functions have been delegated to the First Minister and are carried out by the Welsh Assembly Government, in practical terms it is the Welsh Assembly Government which has principal responsibility for fulfilling these equality duties. This is further underpinned by UK Equality legislation, covering equality and human rights.

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Glossary

The glossary should be used in conjunction with the glossary provided in the Children’s NSF. 7

CSAG Clinical Standards Advisory Group

CEPD/CPD Continuing Education and Professional Development/ Continuing Professional Development

DGH District General Hospital

Day Case Surgery that is performed on the ‘same day’ basis. The patient may remain in Hospital for up to 23 hours

Elective Surgery Surgery that is planned in advance

HDU High Dependency Unit

ITU/ ICU Intensive Care Unit

Key Worker A named person who is both a source of support for children and young people with complex health needs and their families, and a link by which other services are accessed and used effectively. 7

MDT Multidisciplinary team- A team of health care professionals providing medical care to a patient

NCG National Commissioning Group

NSCAG National Specialist Commissioning Advisory Group-predecessor to NCG

PICU Paediatric Intensive Care Unit

PLS/ APLS Paediatric Life Support/ Advances Paediatric Life Support

SALT Speech and Language Therapy

WCBPS Welsh Centre for Burns and Plastic Surgery

WTE Whole Time Equivalent

Hospitals

BCH Birmingham Children’s Hospital

BRHC Bristol Royal Hospital for Children

82

GOSH Great Ormond Street Hospital

MCH Manchester Children’s Hospital

QMC Queens Medical Centre, Nottingham

PCH Prince Charles Hospital

POW Princess of Wales Hospital

RGH Royal Gwent Hospital

RLCH Royal Liverpool Children’s Hospital

RJAH Robert Jones and Agnes Hunt Orthopaedic and District Hospital

UHW University Hospital of Wales

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APPENDIX 1

Anaesthetic and General Surgery External Working Group Members

Dr Geraint Owens (Chair)

General Paediatrician Wrexham Maelor Hospital, Wrexham

Mr Alfie Bass Orthopaedic Surgeon Royal Liverpool Children’s Hospital, Liverpool

Mr Declan O’Doherty Orthopaedic Surgeon University Hospital of Wales, Cardiff

Andrew Ferguson Specialist Commissioner Health Commission Wales

Mr Mike Foster General Surgeon Royal Glamorgan Hospital, Llantrisant

Dr Chris Gildersleve Paediatric Anaesthetist University Hospital of Wales, Cardiff

Claire Grevin Nurse Practitioner University Hospital of Wales, Cardiff

Dr Chris Heneghan Anaesthetist Nevill Hall Hospital, Abergavenny

Mr Simon Huddart Paediatric Surgeon University Hospital of Wales, Cardiff

Dr Fiona Jewkes Medical Director Wiltshire Ambulance Trust

Mr Mathew Jones Paediatric Surgeon Royal Liverpool Children’s Hospital, Liverpool

Dr Chris Littler Paediatric Anaesthetist Wrexham Maelor Hospital, Wrexham

Dr Grant McFayden Paediatric Anaesthetist Morriston Hospital, Swansea

Dr Andy McNab Paediatric A & E Morriston Hospital, Swansea

Gay Miller Nurse Practitioner Royal Glamorgan Hospital, Llantrisant

Helen Morgan Senior Nurse Manager Royal Gwent Hospital, Newport

Dr Magdy Khater Paediatric Anaesthetist Ysbyty Glan Clwyd, Rhyl

Dr Mark Price Paediatric Intensivist University Hospital of Wales, Cardiff

Dr Ingo Scholler General Paediatrician Morriston Hospital, Swansea

84

Dr Huw Jenkins Director of Healthcare Services for Children and Young People in Wales


85

Trauma & Orthopaedics External Working Group Members

Dr Geraint Owens (Chair) General Paediatrician Wrexham Maelor Hospital, Wrexham

Mr Alfie Bass Orthopaedic Surgeon Royal Liverpool Children’s Hospital, Liverpool

Mr Declan O’Doherty Orthopaedic Surgeon University Hospital of Wales, Cardiff

Dr Chris Littler

Dawn Claborne

Paediatric Anaesthetist

Paediatric Physiotherapist

Wrexham Maelor Hospital, Wrexham

Nevill Hall Hospital, Abergavenny

Rose Davies Orthopaedic Nurse Specialist Royal Liverpool Children’s Hospital, Liverpool


Ruth Harrison Orthopaedic Lead Nurse University Hospital of Wales, Cardiff

Dr Chris Heneghan Anaesthetist Nevill Hall Hospital, Abergavenny

Lynn Horrocks Paediatric Physiotherapist University Hospital of Wales, Cardiff

Dr Mark Price

Mr Nigel Kiely

Paediatric Intensivist

Orthopaedic Surgeon

University Hospital Of Wales, Cardiff

Robert Jones & Agnes Hunt Orthopaedic and District Hospital, Oswestry

1

1

1

7

1

1

7

7

7

86

Mr Neil Price Orthopaedic Surgeon Morriston Hospital, Swansea

Sue Saville Paediatric Physiotherapist Royal Liverpool Children’s Hospital, Liverpool

Tom Williams

Mr Phil Thomas

Consultant Paediatrician

Orthopaedic Surgeon

Nevill Hall Hospital, Abergavenny

University Hospital Of Wales, Cardiff

Dr Grant McFayden Paediatric Anaesthetist Singleton Hospital, Swansea

Dr Andy McNab Paediatric A & E Morriston Hospital, Swansea

Mr Paul Williams Orthopaedic Surgeon Morriston Hospital, Swansea

Guy Atherton Paediatric Orthopaedic Surgeon Bristol Royal Hospital for Children, Bristol

Martin Gargan Paediatric Orthopaedic Surgeon Bristol Royal Hospital for Children, Bristol

Kate Williams Paediatric Physiotherapist University Hospital of Wales, Cardiff

John Cashman Paediatric Orthopaedic Surgeon Bristol Royal Hospital for Children, Bristol

Jane Pyman Superintendant Physiotherapist, Orthopaedic Specialist

Bristol Royal Hospital for Children, Bristol

87

Ian Harding Spinal Surgeon Bristol Royal Hospital for Children, Bristol

Dr Cathy White Paediatric Neurologist Morriston Hospital, Swansea

Kevin Mann Clinical Specialist Orthotist Bristol Royal Hospital for Children, Bristol

Amma-Maria Apa Paediatric Occupational Therapist Bristol Royal Hospital for Children, Bristol

Peter Beirne

Dr Huw Jenkins

Superintendent Physiotherapist

Director of Healthcare Services for Children and Young People in Wales

Royal Liverpool Children’s Hospital, Liverpool


88

Ear, Nose and Throat (ENT) External Working Group Members

Dr Geraint Owens (Chair) General Paediatrician Wrexham Maelor Hospital, Wrexham

Mr Raymond Clark ENT Surgeon Royal Liverpool Children’s Hospital, Liverpool

Mr Robert Evans ENT Surgeon University Hospital of Wales, Cardiff

Mr Patrick Cuddihy ENT Surgeon University Hospital of Wales, Cardiff

Mererid Jones Physiotherapist University Hospital of Wales, Cardiff

Alison Flynn ENT Nurse Specialist Royal Liverpool Children’s Hospital, Liverpool


Dr Chris Littler Paediatric Anaesthetist Wrexham Maelor Hospital, Wrexham

Jacqui Lowden Dietitian University Hospital of Wales, Cardiff

Lynn Horrocks Paediatric Physiotherapist University Hospital of Wales, Cardiff

Mr Jonathon Osbourne ENT Surgeon Ysbyty Glan Clwyd, Rhyl

Dr Mark Price Paediatric Intensivist University Hospital of Wales, Cardiff

Dr Amanda Roberts Community Paediatrician University Hospital of Wales, Cardiff

Dr Grant McFayden Paediatric Anaesthetist Singleton Hospital, Swansea

Mr David Snow ENT Surgeon Wrexham Maelor Hospital, Wrexham

Ms Medi Thomas ENT Surgeon West Wales General Hospital, Carmarthen

Heikki Whittet ENT Surgeon Singleton Hospital, Swansea

89

Mr Gareth Williams ENT Surgeon University Hospital of Wales, Cardiff

Mr Huw Williams ENT Surgeon Royal Glamorgan Hospital, Llantrisant

Val Wilmott ENT Nurse Specialist University Hospital of Wales, Cardiff

Bev Curtis Speech & Language Therapist

University Hospital of Wales, Cardiff



90

Ophthalmology External Working Group Members

Dr Geraint Owens (Chair)

General Paediatrician Wrexham Maelor Hospital, Wrexham

Mr Patrick Watts Consultant Paediatric Ophthalmologist University Hospital of Wales, Cardiff

Alison Hooper Orthoptist University Hospital of Wales, Cardiff

Dr Jerry Heath Consultant Electrophysiology University Hospital of Wales, Cardiff

Dr Isabel Aguilera Consultant Anaesthetist University Hospital of Wales, Cardiff

Mr Jai Shankar Consultant Ophthalmologist Wrexham Maelor Hospital, Wrexham

Dr Sally Jones Consultant Paediatric Anaesthetist Royal Gwent Hospital, Newport

Michelle Ralph Specialist Commissioner Health Commission Wales

Dr Andy MacNab Accident & Emergency Consultant Morriston Hospital, Swansea

Mr David Laws Consultant Ophthalmologist Singleton Hospital, Swansea

Dr Tina Duke Consultant Ophthalmologist Royal Gwent Hospital, Newport

Gill Williams Head Orthoptist Royal Gwent Hospital, Newport

Mr David Saunders Consultant Ophthalmologist HM Stanley Hospital, St Asaph

Mr Arvind Chandna Consultant Ophthalmologist Royal Liverpool Children’s Hospital, Liverpool

Dr Margaret Woodhouse

Senior Lecturer Cardiff University, Cardiff

Fiona Pennie Head Optometrist Royal Liverpool Children’s Hospital, Liverpool

Dr Tymandra Blewett-Silcock

Director POPSY (Parents of Partially Sighted and Blind Youngsters)

91

Mr Zeki Consultant Ophthalmologist Ysbyty Gwynedd,Bangor,

Dr Victoria Goodwin

Accident & Emergency Consultant Prince Charles Hospital, Merthyr Tydfil



92

Plastic Surgery, Burns, Maxillofacial & Cleft Lip and Palate External Working Group Members

Dr Geraint Owens (Chair) General Paediatrician Wrexham Maelor Hospital,

Wrexham

Mr Chris Penfold Consultant Oral & Maxillofacial Surgeon

Ysbyty Glan Clwyd, Rhyl

Mr William Dickson Consultant Plastic & Reconstructive Surgeon and Director, Welsh Centre for Burns and Plastic Surgery

Morriston Hospital, Swansea

Hamish Laing Consultant Plastic Surgeon and Deputy Medical DirectorWelsh Centre for Burns and Plastic Surgery


Mr Adrian Sugar Consultant Cleft and Maxillo-facial Surgeon, Associate Clinical Director of the South Wales and South West England Managed Clinical Network for Cleft Lip and Palate


Mr David Drake Consultant Cleft and Maxillofacial Surgeon


Dr Rim Al Samsam Paediatric Intensivist University Hospital of Wales, Cardiff

Mr Kenneth Graham Clinical Director, Burns & Plastic Surgery

Whiston & Royal Liverpo Royal Liverpool Children’sHospital, Liverpool

Dr Grant McFayden Lead Paediatric Anaesthetist Singleton Hospital, Swansea

Clare Baker Clinical Nurse Specialist in Plastic & Reconstructive Surgery


Dr Wynn Rogers Consultant Paediatric & Cleft Anaesthetist


Mr Ian Josty Consultant Plastic & Reconstructive Surgeon and Clinical Director, Welsh Centre for Burns and Plastic Surgery


93

Dr Geoffrey Carroll Medical Director Health Commission Wales

Bill Caldwell Specialised Commissioner Health Commission Wales

Dr Campbell Edmondson

Consultant Anaesthetist Wrexham Maelor Hospital, Wrexham

Miss Emma J Woolley Consultant Oral and Maxillofacial Surgeon

Ysbyty Glan Clwyd, Rhyl

Clare Ford Superintendent Physiotherapist Morriston Hospital, Swansea

Phillippa Thompson Clinical Nurse Specialist Morriston Hospital, Swansea

Dr Michelle James-Ellison

Consultant Paediatrician Singleton & Morriston Hospital, Swansea

Juanita Harrison Ward Manager, Burns & Plastic Surgery

Royal Liverpool Children’s Hospital, Liverpool

Rosemary Wyatt Specialist Speech and Language Therapy

Wrexham Children’s Health Centre, Wrexham

David Vasmer Welsh Officer Changing Faces, North Wales

Louise Scannell Paediatric Burns Ward Manager Morriston Hospital, Swansea

Menna Davies Clinical Specialist Physiotherapist Morriston Hospital, Swansea

Janine Evans Senior Occupational Therapist Morriston Hospital, Swansea

Michaela Rowe Senior Cleft Nurse Morriston Hospital, Swansea

Eirlys Thomas Senior Children’s Nurse Morriston Hospital, Swansea

Andrea Thomas Cleft Co-ordinator for South Wales Morriston Hospital, Swansea



94

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APPENDIX 2

Project Steering Group Members

Gareth Jones (Observer) Children’s Commissioner Office

Dr Gill Richardson National Public Health Service

Alison Lagier Local Health Board Chief Executives

Becky Healey Welsh Nursing and Midwifery Committee

Angela Hillier Welsh Therapies Advisory Committee

Tom Woods All Wales Trust Chief Executives

Zoe Goodacre Health Commission Wales

Andrew Ferguson Health Commission Wales

Andrea Mathews Wales Board of Community Health Councils

Dr Michael Badminton Welsh Scientific Advisory Committee

Sue Greening Welsh Dental Committee

Keith Bowen Contact a Family

Caroline Crimp Association for the Welfare of Children in

Hospital

Dr Huw Jenkins Director of Healthcare Services for Children

and Young People in Wales, Welsh

Assembly Government

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APPENDIX 3

Paediatric Surgical Services Multidisciplinary Committee

To include;

General Surgeon

Ophthalmic Surgeon

ENT Surgeon

T&O Surgeon

Paediatrician

Anaesthetist

Children’s nurse

Pharmacist

May also include;

Plastic Surgeon

Burns Surgeon

Maxillofacial Surgeon

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APPENDIX 4

Specialist paediatric surgery consists of following five categories:

Neonatal surgery (infants up to 44 weeks post-conceptual age) Children whose conditions require specialist expertise Children whose primary surgical problem may be simple but who have

significant co-morbidity (e.g. inguinal hernia in a child with congenital heart disease).

Specialist paediatric urology A small number of adolescents/adults who require late or further

reconstruction of congenital anomalies.

The following conditions/circumstances require specialist care:

Neonatal surgical disorders – including prenatal counselling as well as acute and long term management, in some cases into adult life

Surgical oncology (abdominal, thoracic and soft tissue tumours (benign and malignant) and long term central venous access)

Major trauma, surgical care of the abused child Gastrointestinal and hepato-biliary surgery including inflammatory bowel

disease, gastro-oesophageal reflux surgery, surgery for congenital malformations presenting outside the neonatal period (e.g. Hirschsprung’s disease), severe constipation, intussusception

Thoracic surgery – congenital lung abnormalities, empyema, chest wall deformity

Vascular and lymphatic abnormalities Surgery in children with complex disabilities (e.g. feeding gastrostomy) Children with other specialist conditions who require surgery – for example

a child requiring minor surgery but who has significant congenital heart disease

Certain variations of common conditions (e.g. impalpable undescended testis)

Any general surgical condition in a child when an appropriately trained surgeon or anaesthetist is not available in the secondary centre

There is considerable overlap with other paediatric specialities; in some regions more than one specialty group may manage the same condition. Other conditions will require the full range of tertiary paediatric medical and surgical specialties to be available – for example, endocrine conditions such as Intersex, Spina bifida etc. Some conditions such as inguinal hernias in ex-preterm babies and pyloric stenosis may require special consideration.It is recognised that each DGH should be able to provide GPS services and should only refer patients to the tertiary centre in special circumstances.

Sub-divisions that require separate standards and consideration

Neonatal surgery and paediatric urology

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Definition of sub-divisions

Neonatal surgery is defined as surgery on neonates less than 44 weeks post-conceptual age.

Paediatric Urology specialised activity includes: Management of pelvi-ureteric junction obstruction (surgical and non

surgical) Duplex kidney – ureterocele Cystic renal malformations Nephrectomy (for benign or elective disease) Vesico ureteric junction obstruction Vesico ureteric reflux Bladder exstrophy (including cloacal variants) (NSCAG service) Neuropathic bladder, continent reconstruction Urodynamics Urinary diversion Posterior urethral valves Hypospadias Epispadias Investigation of impalpable testis (paediatric surgery but not defined

urology) Genito urinary malignancies in childhood Major urinary tract trauma Ambiguous genitalia, intersex Minimally invasive urology Urinary calculi – particularly minimally invasive treatment Surgical support for regional paediatric renal failure services

General Paediatric Surgery (GPS)

GPS is the surgical treatment of relatively common disorders that usually do not require the resources of a specialist surgical unit. These include the following:

Elective procedures: ‘herniotomy’ for congenital inguinal hernia and hydrocele orchidopexy for the palpable undescended testis circumcision removal of minor soft tissue abnormalities repair of umbilical hernia

Emergency procedures: appendicectomy correction of torsion of the testis or adnexae operation for incarcerated inguinal hernia pyloromyotomy less complex trauma

99

It must be noted that when consideration is given as to which procedures are specialist, children and young people with significant co-morbidities may need specialist paediatric anaesthetic care even for straightforward operations.

100

APPENDIX 5

Paediatric orthopaedic surgery services that should be regarded as specialised include;

Treatment of congenital limb anomalies Focal limb enlargement Surgical management of metabolic bone disease Fractures through pathological bone Bone tumours (benign and malignant) Management of limb discrepancy Club foot surgery especially revisions Surgery of juvenile rheumatoid arthritis Surgery of osteogenesis imperfecta Obstetric brachial plexus injuries Sequelae growth plate injuries Problems and investigations of children with cerebral palsy (gait lab

and facilities) Surgery for development dysplasia of the hip Complex fractures and fracture complication Complex cases of slipped upper femoral epiphysis Infections of the growth plate Sequelae of bone and joint infections Major trauma in children with multiple injuries Rare conditions in children with syndromes Scoliosis surgery cervical spine disorders and torticollis Adolescent hip dysplasia Complex Perthes disease Some bone and joint infections Congenital hand deformities Surgery for neuromuscular disorders (spina bifida and muscular

dystrophy) Amputation prosthetics Some shoulder injuries

Non-specialised conditions include;

Trauma – fractures (to note: if suspected non accidental injury then will need to managed where there is inpatient paediatric service provision)

Normal variants Screening Infection Some cases of Perthes

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APPENDIX 6 28

Extended Scope Practitioner (ESP) Physiotherapists with appropriate training (e.g. being able to request imaging) to provide orthopaedic clinics for certain groups of children and young people. Appropriate diagnoses include:- normal variations- toe walking- musculo-skeletal problems

The criteria for being seen at the above physiotherapy led clinic is that the children and young people are considered unlikely to require consultant assessment or surgery

Support to be provided for the development of skills in ESP Paediatric Physiotherapists across Trusts to carry out clinics such as:- specialised therapeutic casting e.g. Ponseti- selection for botulinum and specialist follow-up

ESP Physiotherapists to provide regular orthopaedic review clinics for disabled children with complex special needs

Specialist nurse and/or extended scope practitioner physiotherapist to provide clinics for children requiring screening and long term follow up for conditions such as:- Scoliosis- Developmental dysplasia of the hip (DDH)

It must be recognised that all of the above will contribute to relieving pressure on consultant clinics.

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APPENDIX 7

Trauma and Orthopaedic specialist multi-disciplinary team at the Specialist Centre

Core Team Consultant Paediatric Orthopaedic Surgeon Paediatric Anaesthetist Specialist Orthopaedic Nurse Specialist Physiotherapist Paediatric Occupational Therapist Consultant Paediatrician Paediatric Social Worker Play Specialists

With access to: Speech and Language Therapist (SALT) Orthotics (contracted) Wheelchair services Radiology/Radiography Specialist Paediatric Dietitians

District General Hospital Orthopaedic team Consultant Orthopaedic Surgeon with a special interest (see model) Anaesthetist Consultant Paediatrician Children’s Nurse with an interest in orthopaedics Paediatric Physiotherapist Occupational Therapist Play Specialist Social Worker

With access to: Specialist Paediatric Dietitian Orthotics (contracted) Wheelchair services Radiology/radiography

Staff at the DGH able to access specialist advice from the specialist centre.

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APPENDIX 8

Specialised Paediatric Ear, Nose and Throat Surgery

The following list represents specialised paediatric Ear, Nose and Throat surgery:

Routine ENT surgery in children with substantial developmental, immunological or other systematic disease

Congenital ear surgery Bone anchored hearing aids Cochlear implants Management of laryngo-tracheal stenosis Repair of choanal atresia Management of severe congenital and developmental malformations of

the head and neck ENT aspects of head and neck tumour surgery

Specialist Core Cochlear Implant Team Audiological scientist ENT surgeon Community paediatrician with an interest Speech and language therapist Teacher of the deaf Cochlear implant service manager Key worker

For full team see NDCS/BCIG document32

Specialist Tracheostomy (ENT) Team ENT surgeon Specialist Children’s Nurse Specialist Paediatric Physiotherapist Specialist Speech and Language Therapist Specialist Paediatric Dietitian Social worker Paediatric audiologist (as necessary)

We recognise that the clinicians based at the DGH will not spend all their time with children with ENT conditions and should be brought together as necessary.

Specialist Audiology Team Audiological scientist SALT Community Paediatrician with interest Teacher of deaf ENT surgeon

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APPENDIX 9

Paediatric Ophthalmology

The following list of conditions and treatments are regarded as specialised. In some instances, at the discretion of the consultant ophthalmic surgeon and provided anaesthetic care is available this may be provided at a District General Hospital (DGH).Conditions usually treated at a Supra-regional Centre

Neonatal and paediatric corneal grafting/ Corneal Opacification Orbital enlargement for microphthalmos and anophthalmos

Retinoblastoma

Conditions usually treated at a Lead Centre

Congenital cataract (older children may be dealt with in DGH) Congenital glaucoma Electrodiagnostic tests on inherited retinal and optic nerve disorders Orbital and optic nerve tumours Retinal detachment (older children may be dealt with at DGH) Retinopathy of prematurity

Conditions treated at a District General Hospital

Strabismus Lid surgery, including congenital ptosis Penetrating eye trauma Periocular vascular anomalies Retinal-vascular conditions

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APPENDIX 10

Ophthalmic Multi-disciplinary Team

Core Team Consultant Paediatric Ophthalmic Surgeon Paediatric Optometrist Paediatric Orthoptist Contact Lens Practitioner Paediatric Ophthalmic Specialist Nurse Specialist therapist

Extended team Paediatric Electrophysiologist Low Vision Support Worker Education Visual Impairment Team Paediatric Social Worker Play Specialists

106

APPENDIX 11

Plastic Surgery has a wide clinical remit. Often this sub speciality is performed by an adult specialist plastic surgeon, as there are very few paediatric plastic surgeons.

Plastic Surgery Sub Specialities

Congenital hand anomalies Paediatric hand surgery (trauma) Cranial facial anomalies Congenital skull anomalies Congenital vascular anomalies Congenital urological anomalies Congenital upper limb anomalies Congenital anomalies relating to the breast Congenital lower limb construction Trauma and soft tissue damage Bone trauma Burns Upper limb cerebral palsy Congenital ear anomalies Facial Palsy Malignancy Soft tissue sarcoma Reconstruction post surgical procedure/trauma Chest wall deformity

Multidisciplinary Team Member list – Plastic Surgery and Burns

Consultant Plastic / Burns surgeon and junior staff Consultant Anaesthetist and junior staff Consultant Paediatrician and junior staff Physiotherapist Occupational therapist Specialist Paediatric Dietitian Play therapist Theatre nursing and anaesthetic staff Plastic surgery/ Burns trained nursing staff Paediatric psychologist Speech and language therapist

APPENDIX 12

107

Oral and Maxillofacial Surgery is a specialty which requires both medical and dental degrees as well as full surgical training. It encompasses the management of pathology, deformity and trauma to the mouth, jaws and face and includes diseases, congenital and acquired, of the head and neck. Much surgery within the specialty on children is performed by adult specialist OMF surgeons but some, especially the surgery of cleft children and those with other congenital anomalies, is sub-specialised.

Paediatric Maxillofacial Specialties and Sub-Specialties:

Facial, jaw, oral and dental trauma to hard and soft-tissues The management of secondary facial, jaw, oral and dental trauma

sequelae Pathology of the face, jaws, mouth, teeth and head and neck Craniofacial anomalies and deformities not covered by NSCAG Congenital and acquired skull anomalies not covered by NSCAG Clefts of the lip and/or palate Congenital vascular anomalies of the face, mouth, jaws and head and

neck Congenital and acquired anomalies of the external ear Tumours of the face, jaws, mouth and head and neck Distraction osteogenesis of the craniofacial skeleton The use of craniofacial osseointegrated implants and facial prostheses Management of congenital syndrome Orthognathic surgery.

Specialist Team for Maxillofacial/Cleft Lip and/or Palate 48

Plastic Surgeon Maxillofacial Surgeon Specialist Cleft Nurse Otologist Audiologist Specialist Speech & Language Therapist Paediatric Psychologist/Counsellor Orthodontist/Dentist Specialist Paediatric Dietitian Play Specialist

Specialist Team for Cranio-facial Prostheses and Implants Maxillofacial surgeon Maxillofacial Prosthetics/Technicians Wound care nurse

108

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