Empower - Contact a Family · National Network of Parent Carer Forums ‘Our Strength Is Our Shared Experience’ Progress report National Network of Parent Carer Forums Engage Enable

N N P C FNational Network of Parent Carer Forums

‘Our Strength Is Our Shared Experience’

Progress reportNational Network of

Parent Carer Forums

Engage

Enable

Empower

June 2014 Report compiled by Carrie Britton

Acknowledgements

We would like to sincerely thank all parent carers who work tirelessly to make a difference locally, regionally and nationally by filling in surveys and responses, contributing their expertise and participating in local decision making. In this period of austerity and change, we appreciate your passion, effort and determination to co-produce services that enable our children and young people with additional needs to thrive and achieve. We recognize that this is only possible through effective partnership so we also thank the wide range of other commissioners, managers, practitioners and colleagues who are also working to enable and support our families.

We thank the steering group members (past and present) and our new Programme Officer Sarah Gallimore who have contributed to our work, and to this report. We are especially grateful for the support and expertise of all the Strengthening Parent Carer Participation Programme team at Contact a Family, lead brilliantly by Sue North, Director of Operations. We value the partnership with Patrick Agius on behalf of the team at the Department of Education, and of Gareth James on behalf of the Department of Health, and the wide range of other statutory and voluntary sector organisations with whom we work.



Contact a Family is the delivery partner for the Department of Education ‘Strengthening Parent Carer Participation Programme’

Contents Purpose of Report ........................................................1

Introduction to the National Network of Parent Carer Forums (NNPCF) ..........................3

Summary of Achievments for NNPCF 13/14 .....5

Steering Group activity analysis ............................6

About the forums and regional network structure of the NNPCF ............................7

About the NNPCF and participation .................. 10

Updates from each regional network................ 12

Examples of NNPCF working with external partners .............................................. 19

NNPCF Plans for the future ................................... 23

Constitution .................................................................. 24

Report compiled by Carrie Britton

Progress report • National Network of Parent Carer Forums • June 2014

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Purpose of the report

The purpose of this second Progress Report is to provide information about the National Network of Parent Carer Forums and to share a clear account of our activities, achievements and experiences since our previous report published in March 2013.

“The NNPCF have had representation at almost all of these events. Their input and challenge has

been invaluable, providing both a positive influence at the events and in shaping the work of the pathfinders.

I have worked with various NNPCF representatives who have been great in ensuring the views of parent carers, children and young people are listened to and considered during the events, which is an absolutely essential part

of implementing the SEND reforms. I would personally like to thank them for their input and challenge over the past two years, and look forward to

continuing this relationship through the next phase of the programme as we approach September 2014.”

Comment from Mott Macdonald colleague relating to NNPCF participation at the reform action learning events.

KISS participation exercise


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“I’d like to take this opportunity to thank you personally for your positive contribution to the debate. As well as to congratulate the National Network of Parent Carer Forums on this, your first AGM, as you carry on the development of an even stronger collective voice …

Of course, as we’re all aware, a change in the law isn’t enough. It must go hand in hand with cultural change to really make a lasting impact.

And there’s a genuine opportunity here to do just that; to transform the support you receive and transform lives – something which is clearly long overdue.

I’ve been struck by how many parents I’ve met who say they’ve had to fight to get their child’s needs recognised, fight to get different services to work together, fight to be involved in decision-making, fight to reduce delays, fight to find out what help is available. You don’t need me to tell you that this simply isn’t good enough.

…and in helping us find a fresh approach that, as one parent put it “sees my son as the funny, smart little boy I see. The little boy who deserves to have people who are there to help him driven to do their very best so he has as many opportunities as other children.”

..It’s for this family, for all the families in this room and beyond, that we’re committed to creating, with you, a system that provides more protection and support than ever before.”

Message from the Parliamentary Under Secretary of State for Children and Families, Edward Timpson MP, given at our first Annual General Meeting on the 5th of November 2013.

Introduction The National Network of Parent Carer Forums formed in April 2010 and is one element of the Strengthening Parent Carer Participation Programme delivered by Contact a Family (CAF) on behalf of the Department of Education. The NNPCF builds on the participation ground work related to Short Breaks established by parent carers and CAF during the Aiming High Programme. The group began as nine regional parent carer representatives and one non regional member. Despite initially having only limited resources, NNPCF has now become an established and credible national organization based on an active network of 150 local forums. Working closely with our host team in Strengthening Parent Carer Participation, we are delighted this year to see an increase from 52,531 to 63,336 parents linked to Parent Carer Forums.

While recognising any term may not suit everyone, we have chosen to use the term ‘parent carers’ because we believe that this is an inclusive term for adults with parental and/or carer responsibilities for children and young people with additional needs or disabilities aged 0 to 25. Therefore this term includes adoptive and foster parents, grandparents and others, and who are welcome members of local parent carer forums.

Since the last report in March 2013, the work for the local forums and the NNPCF generally has been especially pressured by the huge range of activities related to the Children and Families Act, and new Code of Practice, which are considered the most significant Special Education and Disability (SEND) reforms for thirty years. We have actively participated in many of the national discussions and activities to help influence this and this work is described in a later section.

We have made significant progress in being recognised as the parent carer group with an established local, regional and national organization of active parent carer representatives who bring the issues and voice of members to make a difference at the planning stage of government initiatives. We were pleased to

welcome the Minister Edward Timpson to our steering group meeting on the 12th of July, and for us to discuss with him and members of his department many of the core issues and experiences that parents wanted voiced. He recognised the fight that most of us have experienced in accessing the care and support our children need, and the part that both the SEND reforms and cultural change could make to achieving better outcomes for our children and families.

He later returned to meet, listen to and speak to members at our first AGM on the 5th November 2013. (You Tube link here) We will continue to robustly feedback to the department how families experience the changes, and we persevere along with members to enable families to thrive, not just survive.

During the past year we have worked hard to do three simultaneous tasks:1. To provide parent carers with information and

participation opportunities at local, regional and national levels in order to influence the development of the Children and Families Act;

2. To build partnership working with government departments and other key organisations so that participation and co-production become embedded practices;

3. To develop internal governance policies and procedures to underpin our pan disability representational role and to develop our Constitution with our members.


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Introduction to the National Network of Parent Carer Forums (NNPCF)

We were delighted when this work with our members culminated in you voting to endorse our Constitution at the AGM; and it is included at the end of this report.

The aims of the NNPCF are to:1. Ensure the voices of parent carers are heard

and to work nationally with Departmental and Strategic Partners across Education, Health, Social Care and other National Organisations established to support and care for children with Special Educational Needs and Disabilities.

2. Empower and support parent carer participation developments across England.

3. Ensure that good practice, knowledge and shared expertise continues to grow and strengthen through a cohesive and coherent structure which sustains the effectiveness of Parent Carer Forums, individually or as a collective, and which is at all times consistent with our non-negotiable Core Values.

How we work – our core valuesThe forums are made up of parent carers of children and young people with additional needs aged from 0 to 25 years. Our members are forums which have been established individually and our regional networks operate differently according to the members decisions. Therefore, we have developed non-negotiable core values to ensure consistency, and clarity about our primary purpose, which is building effective and meaningful participation and parent carer influence in local and national decision making. These values underpin our decisions, behaviours and plans, and are:

• We actively promote a parent carer led approach which is solutions focussed and constructive

• We model and promote parent carers speaking for parent carers at all levels (rather than proxies representing us)

• We promote an understanding that parent carers have an independent and unique voice and we promote recognition of their skills and experience

• We include all parent carers and others who have parental and carer responsibilities (foster carers, adoptive parents, grandparents etc)

• We are a pan disability organisation with representation across all conditions, all sectors and therefore seek to represent the majority of families by consensus rather than single condition or single issue campaigning.

Key partners and working relationships

Operational support: new Programme OfficerUp until this year there has been no designated administrative support for the NNPCF which despite help form Contact A Family has impacted our capacity and speed of response. One of the highlights of the year was securing enough funding to be able to appoint a part time Programme Officer to support the steering group, and welcomed Sarah Gallimore in November 2013. We hope we will be able to secure more administrative support soon.

The NNPCF Steering groupThe parent carer steering group meets for a minimum of ten days per year, and as the members are regional representatives, part of their function is to ensure there is an actively two way dialogue and information exchange between regional networks and the national group. Our preferred way of operating is to have two representatives working together wherever in order to demonstrate a range of experiences, to deliver accountable peer support, and to add value to


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Service users:Child, young person,

and parents = family

Third Sector:community and

voluntary, national and

local orgs

Statutory Sector:Commisioners, providers and practitioners

decision-making. Therefore we have two co-chairs who are elected from the steering group which also assists continuity and shared responsibility.

One of the NNPCF achievements this year has been that the steering group has nearly completed the important transformation of its recruitment process away from membership by invitation. Nine out of ten regional representatives have now been elected or reselected using the open and transparent recruitment process which actively involves local forums.

Another achievement has been the growth of the social media communication between forums and regional networks and linked to the national steering group. We have also launched the new website which we can no continue to develop as the organisation grows.

Summary of Achievments for NNPCF 13/14• All but one members of SG has been elected

through a transparent process that includes wider membership of the NNPCF – the final post will be going through the election process in the near future

• NNPCF has successfully become a constituted organisation

• The NNPCF and local forums have been recognised as effective in delivering the parent carer voice as evidenced by our involvement in the national debate and the references to working with Local Parent Carer forums in the Draft SEND Code of Practice.

• Our reach through local parent carer forums continues to increase and is now in excess of 63,000 parent carers.

• The successful delivery of Co-production Workshops throughout England in partnership with SE7 Pathfinder Champion Group and Contact a Family

• In partnership with Carers UK and CAF sucessfully secured enhanced parent carer rights in line with the enhanced rights that will be offered to carers of adults through the Care Act

• Secured additional funding for dedicated Programme Officer role for NNPCF

• Launched the new NNPCF website and enhanced communication with our members via Social Media

• Maintained active regional networks which provides a direct link to the reality of parent carer participation in local areas and provides key intelligence for our input into national decision making

• In partnership with CAF made a successful case for additional funding for local parent carer forums to reflect the increased workload due to the SEND reforms

• The successful publication of our report answering the question ‘What good integrated care looks like in transition.’ as a result of an invitation from the Children’s and Young peoples Health Outcomes Forum to consider this question – insert quote from page 19?

• Maintained a strong working relationship with the Department For Education, which includes regular attendance by Department representatives at Steering Group meetings and Ministerial visits with the Steering Group and at our AGM. We also have continued to develop our relationship with the Department of Health and other national health bodies, such as NHS England.


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Steering Group activity analysisThe group is currently running with its minimum number of members because both co-chairs are also working as regional representatives. The group are contracted to work for a minimum of 23 days in return for a basic honorarium of £4,000 per annum, but as evidenced in a recent analysis of their work as a group, most of them are contributing several times this amount of time to NNPCF activity.

The analysis showed that overall:

n the hours delivered were spent in the regions

n the hours delivered were spent in external meetings

n the hours delivered were spent on internal meetings

n the hours delivered were spent on other – eg work associated with co chair role

1054 hours of representation delivered at national meetings

As stated earlier there are some regional differences in how the networks operate (for example there is a minimum requirement of three regional meeting per year, but in some areas there are 6 meetings).

Variations between steering group members individual activity was:

The time that reps spent in regions ranged from 36% - 7%

The time reps spent on external meetings range from 59% - 16%

The time reps spent on internal meetings ranged from 56% - 25%

(The minimum level of internal meetings for each rep over a 12 month period would be 80 hours which is 43% of basic delivery for one rep.)

The time spent on other ranged between 24% - 18% and covers work specific to co-chair role

How we work with CAFThe NNPCF is a separate constituted organisation whose funding is provided as part of the Strengthening Parent Carer Participation programme (SPCP), which is a contract from the Department of Education and delivered by Contact a Family. The Director of Operations for this programme is Sue North. This report sits alongside that from the SPCP team about the National Picture and is based on the return information from local forums which is part of their grant monitoring process. See National Picture report and website

On behalf of the Department, CAF has a small team to administer the Participation grant which enables eligible parent carer forums to develop locally. There is a team of five CAF Regional Advisers to support their development and ensure the effective use of the grant.


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39%

8% 15%

38%

What are parent carer forumsParent carer forums are organised groups of parent carers of children or young people with additional needs and/or disabilities aged from 0 to 25 years. There is one Department of Education Participation Grant available annually for each of the 151 local authority areas, which is administered and monitored by the Strengthening Parent Carer Participation team at Contact a Family.

We are delighted that an increase in funding has been awarded in recognition of the hard work and value of forum members’ contribution especially in the era of both austerity and huge turmoil as the SEND reforms are delivered locally. The grant has been increased to £15,000 from its previous level of £10,000, and the process has become as simple as possible while still reaching the standards required for use of public funds.

The local forums are typically led by a steering group of between 5 and 12 parent carers of children or young people with a range of conditions and abilities and complexities. The forums can access Regional Advisers for support and advice and are offered training opportunities to raise skill and knowledge levels in this fast moving field.

Markers of good practice working with parent carer forumsThe markers of good practice forum are:

Minimum level

1. Parent carers’ engagement is valued, planned, and resourced.

2. Pan disability – all conditions, spectrums, additional needs and/or disabilities

3. Parent carer leadership – working proactively not just consultation responsive.

4. Parent carer participation is evident throughout planning, delivery and monitoring stages.

5. Clarity for parents and providers about function of parent forums (mission statement etc).

6. Clearly described roles, expectations and support for Parent Representatives.

7. Two-way feedback mechanisms to main parent carer group and wider parent carer community.

In development

1. Authentic co-ownership of work and partnerships, and co-presenting of user/provider experiences.

2. Parent carer forums are well linked to other local groups and participate in regional networks.

3. Transparent written forum governance.

4. ‘Reward, Recognition and Remuneration’ policy to aid sustainability.

5. Ongoing recruitment and training opportunities of new parent carers.

About the forums and regional network structure of the NNPCF


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Children and young people with additional needs and their

families

National Steering Group

Regional Networks

Local Parent Carer

Forums

We recognise that this is a complex, sometimes tense arena for parents, practitioners and managers. Those involved need skilled leadership and encouragement to mark progress and build trust. Local Authorities that performed well in the delivery of Short Breaks reported that having strong parent carer forum involved throughout the process was a significant factor for success.

Outcomes: Families report better outcomes and experiences for the disabled child or young person, siblings and other family members when these groups are involved in shaping those services or reforms. There is evidence that effective Parent Participation results in better fit between families’ needs and service provision, higher satisfaction with service delivery, reduced service costs as long term benefits emerge, better value for money decisions and less conflict between providers and those dependent upon services.

Current SEND reforms, like extending the ‘personalisation agenda’ require a cultural shift alongside informed investment and support: like Parent Participation. Local histories and relationships have shaped a wide range of experiences and arrangements in local parent carer forums, and the emphasis is to build on these foundations to extend good practise, and achieve better outcomes for disabled children, young people and their families.

Mechanism: Meeting the challenges of engaging with a range of parent carers whose families’ have a range of experiences, and accessing parents who are available, informed, skilled and committed to problem solving is demanding. We strongly affirm that the solution lies in investment in pan disability Parent Carer Forums rather than just individual parents. Local Parent Carer Forums who form constructive partnerships with local managers and commissioners are usually those that have good quality support, effective communication resources, network with a wide range of parents and groups, and have transparent governance.

Sustainability: parental expertise is a scare resource and requires skilled support. A key tool to encourage wider participation, and flow-through of parent carers is a clear governance and a transparent written policy for fair and consistent ‘Reward, Recognition and Remuneration’ policy for parent carer engagement in decision-making, service planning and delivery, and ongoing monitoring.

The minimum requirement is for quick and easy system to repay parent carers any out of pocket expenses incurred. A good policy would include clear descriptions of graded tasks and responsibilities and corresponding rates of remuneration for expertise, time and commitment. The remuneration of parent carers should be commensurate with other advisors working on the SEND programmes. It will also enable parent carers who wish to contribute their expertise to do so in a range of ways with consideration for their primary role as parent carers .

For more information please visit our website: www.nnpcf.org.uk

To contact us please email for the attention of the co-chairs: [email protected]

The forums are self governing autonomous groups who have chosen different organisational structures according to the capacity and needs of the local group.


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Complete ‘How to Guide on Parent Participation’ is available from Contact a Family and NNPCF websites.

Full TDC report about delivery of Short Breaks available on CAF website – summary report to be found on www.nnpcf.org.uk

Forums using different types of organisational structures 2013-14

Local forums are members of regional networks who meet regularly to share learning, information and mutual peer support.

‘Our forum has benefitted hugely from our involvement in our regional network of NNPCF – with us receiving both practical and emotional support, as well as friendship and feeling part of a strong team all working to the same objective – to improve outcomes for children and young people with additional needs and disabilities…

Through the National Network we are also able to receive information about national policy developments and initiatives, as well as being able to collectively respond to consultations, which is more powerful than one forum responding alone’.


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n Registered charityn Community Interest

Groupn Social Enterprisen Constituted Groupn Other/None

1

17

24

64

42

The National Network of the Parent Carer forums was launched in April 2010, and built on the foundational work by Contact a Family as part of the Aiming High for Disabled Children programme. Our work and practice has developed enormously and as we anticipate the publication SEND Code of Practice, and the final arrangements in the Children and Families Act, we would like to emphasis the following core features about Participation.

1. NNPCF are advocates for families not just parent carers

We believe that parents are advocates for family life not just for parents and so NNPCF advocates for families of children and young people with additional needs and/or disabilities; not just for parent carers alone. We have achieved a lot in how the regional networks function and representatives are selected, and still have much more work to do to reach more families, and a wider range of families, and welcome your support to help us achieve this.

We welcome and encourage meaningful participation of children and young people themselves, and their siblings and especially members of seldom heard families.

2. Individual and strategic participation

All parents want and expect to be a key part of the individual decision-making processes that impact their children and family. This expectation is heightened when the child has additional needs and the options are more unclear, more complex and more likely to involve people outside the family. We welcome the increased emphasis that children, young people and their families are at the heart of the reforms, and are to be central participants in the decision making for individual children.

Participation by parent carers or young people in strategic decision making is however very different. Here the essential element is that parent carers work as a group in a forum, representing families living with a wider range of experiences


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and additional needs. Supported by training, governance processes, parent carer colleagues and linked to a wide membership of other families, these parent carer representatives can operate in a proactive way, bringing evidence of patterns where change is needed, and working as critical friends to the local authority and health care colleagues.

As each child develops parent usually expect to enable their children to develop decision-making skills by practicing making choices, developing their own awareness and recognition of possible consequences from taking different choices. This natural process can become more complex or problematic and take longer where the child has additional needs that impact the development of decision-making.

3. Solution focused participation and not campaigning

The NNPCF steering group and constitution are clear that while we seek to influence change this is most often as critical friends within longstanding decision-making groups where the parent carer is a trusted and equal member. This situation happens at local and national levels, and enables relationships and partnership working to develop that can endure differences of perspective, and constructive challenge but where all parties work to find and collaboratively own effective solutions.

A wide range of important issues impact families and we recognize the need for individuals to campaign actively to achieve change about some issues. However, the NNPCF uses a consensus approach to positively forward the common issues that impact most families. It cannot forward single issue or single condition campaigns. This is especially the case where campaigns advantage one group of children and families over and above the interests of the others, or where there are seriously conflictual perspectives between parents. We also do not support negative or personalized campaigns which we feel are counterproductive, create more conflict and are damaging to working relationships and positive outcomes for families in the longer term.

About the NNPCF and participation


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This is a difficult arena, where shades of grey predominate and we will make a huge effort to widely share information about campaigns so that individuals can choose to get involved on their own behalf.

4. Co-production and why it is important

Information, effective consultation, meaningful participation are the building bricks of co-production which NNPCF believes is the target for partnership working. In the longer term, we believe a cultural change that is built around co-production will be one tool for enabling services to be planned and delivered that truly built around the lived experiences of families.

Co-production happens when:

All team members togethershare an understanding of issues,

agree outcomes,co-produce plans, actions

and materialsas a collective.

Co-production is:

a learning process which:• develops over time and is the difficult option

• blends a range of expertise and perspectives, involves difference

• is driven by a solution focused approach from all participants and requires:

• strong leadership, patience and joint commitment

• communication that is transparent and open,

• relationships that are equitable and respectful to help the team overcome complex challenges and continue the process of learning together.

What practitioners say…

“Provided a challenge and valuable insight into what does

and doesn’t work for parent and children.”“I thought I worked with

parents well and understood participation… I would never go back

to how I did things before: this is about trust and really putting child

and family at the heart of what we are doing.”“Working together on a

regular basis has helped understanding from all

perspectives. The result has been far less of a confrontational

approach.”What parent carers say...

“There is improved

knowledge and trust.”“Seeing real changes in

relationships with professionals who are now approaching things

differently. I understand now too why some things can’t be done.”“More transparency and

honesty all round … More time invested in relationships and

seeing this as a vital not an ‘add on’”

The regional networks enable sharing, learning and peer support between local forums members, discussion about local experiences and participation opportunities, and mutual information exchange between the Regional representative and local forum representatives, with the support of the Regional Advisers.

Local forum members have made the following typical comments:

“As a new Chair – I have found the sharing knowledge/experiences really valuable. I have been able to go back to my Local Authority and quote examples of good practice in

other areas.”“I think the dissemination of information up and down and across the National Forum structure is critical for forums to act as, and benefit from,

being a cohesive group.”

“We have really appreciated the advice and support from our Regional

Adviser and are thankful for the information and support from our Regional Rep. It’s

great being able to have a handle on what is coming and also what the NNPCF have

been asked to co-produce.”


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Updates from each regional network


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North East & Cumbria

Yorkshire & Humberside

East Midlands

Eastern England

London

South EastSouth West

West Midlands

North West

Maureen Morris

Fiona Beard

Dave Nutting

Karen Wooddissee

Mary Busk

Kay Moore

Sherann Hillman

Sarah Thomas

Doug Morris Lara Roberts

North West (23 forums) Representative Sherann Hillman (also elected co-chair)The NW has been developing and linking up better as a region as a result of regional training days and the ‘Participation for Life’ course hosted by PiPS using the discretional grant payment. This has resulted in two parent carers coming forward and offering to take on a regional chair’s role at the Regional Network meeting, something which nobody has been willing to take on previously. The Regional Network meetings are always well attended, though not all areas prioritise attendance for a number of reasons, be it distance, volume of work or other commitments.

Many NW forums are facing particular challenges at the moment due to continued cuts and the forthcoming SEND reforms. Many forums feel that their areas will not be ready for the reforms. Though many areas are fully engaged and working co-productively with services and in particular the local offer; it’s associated work streams including EHCP’s and transitional arrangements; short breaks statements, there are several across the region who feel deliberately excluded from meaningful involvement in this work. There are some forums whose own internal issues preclude them from involvement, however, they are working with Contact a Family associates in order to resolve their issues.

North East (12 forums) Representative Maureen Morris The North East & Cumbria region is made up of 12 Parent Carer Forums and stretches from the Scottish borders down to North Yorkshire in the east and Lancashire in the west. It is a large geographical area containing both rural and urban areas, sometimes even in the same Local Authority area. Many families with children with complex health needs use services from across the region. Our half termly regional meeting are held in Newcastle as this has been deemed the most central point with good transport links for all the forums.

These meetings are chaired by the regional representative who currently is Maureen Morris, who took over from the previous representative Johanna Smith who stepped down in May 2013. Each forum takes a turn to host the regional meeting. In addition the south of the region holds cluster meetings while continuing to attend the regional meeting. There has been a number of regional events held this year with good attendance from throughout the region which has enabled us to share good practice and concerns on a face to face basis in addition to our well used regional Facebook page.

West Midlands (14 forums) Representative Sarah Thomas (also elected co-chair)The region consists of 14 local forums which represent a wide range of parent carer communities, including diverse urban based forums and forums that work in large scarcely populated rural areas. Each community has its own strengths and challenges but we have found that in coming together as a region we can learn from, and provide support to, each other. We have continued to meet at least termly and the meetings are rotated around the region. This means that there are always opportunities to attend for parent carer reps who find it difficult to travel significant distances due to their caring responsibilities.

This year we worked not just as a group of parent carer forums, but also have developed our partnership with the West Midland’s Parent Partnership Services when the region came together, across two meetings, to co-produce a response to the Code of Practice consultation.

The region also provided an opportunity for local forums to participate in a marketing training event, supporting forums to make contact with even more families, and has been represented at Coproduction Workshops, management training and Early Support Cluster groups. We look forward to continuing to develop the West Midlands Regional Network and supporting parent carer participation throughout the region.


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East Midlands (9 forums) Representative Dave NuttingWhist the smallest of the regions with only 9 Local Authorities we cover one of the largest geographical areas and contain the most diverse of populations. Three of the nine areas in the East Midlands have been pathfinders in the SEND reforms and Leicester continued their part with the Champion role for the region and will be working with Nottinghamshire over the forthcoming year to improve the on the quality of understanding and sharing of information.

As many will have seen from the Contact a Family DVD on coproduction this has given some of us a great opportunity to work closely with our Local Authorities and many of us have been able to share and bring the talents honed in the pathfinders into the everyday work of our Forums when undertaking the increasingly difficult tasks of participating in the redevelopment of many of the services that areas have seen squeezed by spending restraints since the recession.

All of our areas have grown in membership and ability, many have developed close relationships with each other, working together and sharing information wherever possible particularly where boundaries like those of Health now cross the traditional borders of the Local Authority.

Parents and carers have found the information provided by the regional forum, its advisor and representative who always attend with information from the NNPCF and CaF about the national picture invaluable to their individual areas continued development and success.

Yorkshire and Humberside (15 forums) Representative Fiona BeardThe Yorkshire and Humber region includes 15 local authority areas all of which have a Department of Education funded parent carer forum. The forums are all very unique and are organised to meet their Local Needs. The Yorkshire and Humber region includes 15 local authority areas all of which have a Department of Education funded parent carer forum.The forums are all very unique and are organised to meet

their Local Needs. The Regional meetings are held throughout the Yorkshire and Humber area, and chaired by the hosting forum, the meetings are well attended, and are an important part of the participation journey sharing, reflecting and informing each other of the wider issues.

As the SEND reforms have picked up speed across the region, Yorkshire and Humber have used their regional meetings to full advantage by sharing what’s working and what’s not working in their local areas. A number of guest speakers/invited guests have attended regional meetings over the last few months, this has really helped forums to take back important knowledge and learning to their wider forum membership. The regions Facebook page continues to be a vital source of information sharing. It not only keeps the communication going between regional meetings but it also allows forums to ask important questions and check out if similar things are happening in other areas.

All members new and old are encouraged to participate and learn about co production in a solution focused way.

Eastern (11 forums) Representative Karen Wooddissee It has been an exceptionally busy year for the Forums in the Eastern Region. We have ten very stable and productive organisations, we just have one area that currently does not have a constituted group. Our termly Regional meetings have been


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very well attended, most Forums have had Parent Carer Reps participating each time. The Region has a very supportive and collaborative ethos, this provides us with a safe environment which enables us to share and learn from each other as a group. We held our first regional training event, looking at ways of building capacity, this was well attended and received and has given us lots to consider for the future.

We have been represented at a wide range of regional events; Pathfinder Champion support events, Early Support Clusters and training, we also have a place on the Children and Young People Steering Group of the Strategic Clinical Network for East of England and on its associated Forums and Work Groups, this gives a firm base for us to work more closely with CCGs and Health Service providers locally. We have Forums represented on local Health Watch Boards and Child Health & Maternity Commissioning Boards.

Forums have run participation events to enable a wider parent carer voice to be heard within the development of the Local Offer, they are members of strategic planning groups and have made numerous presentations to service providers in local areas.

“It was great to be asked to open our Area Provider Day; it was an opportunity to be able to

be positive about how the vision of Children & Families Act could make such a difference to the lives of our families. There is so much negativity about change, but if services work with their Forum we can really get things right for families.”

London region (32 forums) Mary Busk and Kay MooreLondon is the largest region in terms of Local Authority areas and population and consists of 32 parent carer forums. The London Region has two parent representatives that cover 3 cluster groups, North East, North West and South. Each cluster meets termly. Forums take in turns to host these meetings and it is an excellent opportunity to share information about what is going on locally, across London and at a national level.

During the last year we have developed a London Strategic Group to identify and address key issues that are specific to London. This group is made up of the two NNPCF regional representatives, the CAF adviser for London and parents from the 3 cluster groups. This group aims to meet termly and has arranged opportunities for the three clusters to come together for training on the new Code of Practice, Introduction to Participation and Practicalities of Running a Forum. These sessions have been well attended and have given forums that are not usually able to attend the Cluster meetings the opportunity to become more involved in the region.

“This was amazing.” “This was a fantastic workshop.” “Sharing values, Key elements, inspires others.” “This workshop helped me to remember why we started and what we are here for.”

This positive peer to peer support has been extended beyond the regional cluster meetings and training opportunities, with London forums involved in Pathfinder areas providing information and sharing ideas and examples of good practice with regards to the implementation of the SEND reforms with forums in non-pathfinder areas.

“I have particularly appreciated the tailored/responsive training they have helped to provide utilising the pooled funding – a really good idea that has worked well.”


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South West (17 forums) Representative Doug Morris As a region we now have a constitution which will be used as a platform to develop our regional structure and further strengthen our involvement in work regionally and nationally.

The last 12 months has been challenging for forums in the South West for different reasons. The SEND Reforms have put pressure on forums to provide resource to support the development of the EHCP plans, the new assessment processes and the Local Offer plus other work streams in their respective Local Authorities; however it is pleasing to report that Forums have risen to the challenge. In addition to this some forums have seen a change of leadership in their steering groups but have still managed to maintain their level of participation in different aspects of their work.

Many of the forums are still increasing their reach using different approaches to getting the message about participation out to parents who are hard to reach. To support the outreach work there have been three training courses run in the region to develop an understanding about Participation to those who wanted to learn more.

The South West region has developed links with organisations who are associated with our work, these organisations include; Early Support, Parent Partnership, SEN Leads regional forum, the regional strategic clinical network. Doug Morris had the pleasure in presenting at the regional Parent Partnership forum in May and the regional SEN leads conference in June last year.

South East Region (19 forums) Representative Lara RobertsThe South East region has nineteen parent carer forums and is divided into two cluster groups due to its size geographical. In the north cluster which has nine forums in total with two no active and the south cluster has ten forums that are all active. All these forums bring together a collective amount of experience ranging from large unitary LA to county wide ones-this adds to the flavour of what the SE brings to the NNPCF. We meet three times a year for both clusters.


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The Forums agreed from last year to pay into a regional kitty, which is held by one of our forums and it has been used for various things such as the development of a regional policies booklet, it is also there to support us with the hosting forum to pay for a member to type up our minutes as well as the kitty paying towards hosting the venue for reps to come together. We also have an emergency element in the kitty to support forums that are not able to attend a regional event; this is decided between three reps from SE to ensure that that all forums are able to participate within the region.

…Through the national network we are also able to receive information about national policy developments and initiatives, as well as being able to collectively respond to consultations, which is more powerful than one forum responding alone’.


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‘Our forum has benefitted hugely from our involvement in the South East NNPCF – with us receiving both practical and emotional support, as well as friendship and feeling part of a strong team all working to the same objective – to improve outcomes for children and young people with additional needs and disabilities…

Working with government departments related to the Children and Families Act Reforms The NNPCF have had two representatives to the National Advisory Group, and the Pathfinder Advisory Group which includes representatives of all the key partners influencing the SEND reform programme. With the progress of the Children and Families Act legislation, these groups have now become the SEND Implementation Board.

Overview of our involvement in the send reforms and progress to date around participation

Mott MacDonald This is the organisation contracted by the Department of Education to support the Pathfinders and delivery organisations in the shaping and delivery of the reforms. They have therefore hosted action learning events and many other regular work stream meetings that enable sharing of experiences and strategies across different local, regional and National Champion Pathfinders. All the events include local parent carer forum or NNPCF members demonstrating the requirement to work with parent carer representatives throughout the new reform processes.

Mott MacDonald’s events are almost entirely populated by Education, Health and Care providers and their commissioners within Local Authorities, all trying to develop better futures on behalf of disabled children and young people and their families.

Dave Nutting, NNPCF steering group member writes:

“The NNPCF are always invited and welcomed by the team and our views respected and considered by everyone in the room and the NNPCF can be confident that our impact at these events has been very positive to all parties involved in the processes of understanding and embracing the cultural changes required by parent carers and our children in the legislation which all of the participants have been developing.”

Scott Boyd of the Mott MacDonald Pathfinder Support Team puts our role at Mott Macdonald into perspective with his take on our presence at their Action Learning Events:

“Part of our role as the Pathfinder Support Team includes facilitating a series of Action Learning Network events in which Pathfinders, representatives from the Department for Education and Department of Health, and various voluntary and community sector organisations attend to share learning and discuss the work that pathfinders are undertaking. The NNPCF have had representation at almost all of these events. Their input and challenge has been invaluable, providing both a positive influence at the events and in shaping the work of the pathfinders.

I have worked with various NNPCF representatives who have been great in ensuring the views of parent carers, children and young people are listened to and considered during the events, which is an absolutely essential part of implementing the SEND reforms. I would personally like to thank them for their input and challenge over the past two years, and look forward to continuing this relationship through the next phase of the programme as we approach September 2014.”

Working with National Pathfinder Champion delivering Co-production workshopsNNPCF and CAF, The SE7 Pathfinder and the Department of Education collectively delivered five oversubscribed workshops across the country with a total of 264 delegates with representatives from 61 local authority areas.

During the workshops we heard from local forum representatives and their colleagues about local experiences of co-production, as well as learning more about the progress of co-production across the South East seven local authorities that make up the SE7 which is national champion pathfinder leading on engagement with parent carers and young people. The events enabled delegates to hear more about the core offer of support for forums from the SPCP team and the NNPCF.


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Examples of NNPCF working with external partners

The learning outcomes for these were to:• reflect on the different stages of participation

and their local practice,

• hear from the DfE about how co-production operates within the reform programme and Code of Practice

• understand experiences of participation activities from different perspectives

• hear about the challenges and successes from Pathfinder areas

• build a network of contacts,

• gain tools and tips about how we could build co-productive practices locally

“Thought provoking re what coproduction actually means and leaving behind the ‘them’ and ‘us’ attitude on both sides.”

“The resources are really useful and will save a lot of time. Memory stick brilliant idea. Best event I’ve been to!”

“Thought provoking and feel empowered to continue to strive for coproduction within the LA.”

Working with Contact a Family and Carers UK to extend enhanced Carers’ rights to parent carersWe work closely with colleagues at Contact a Family and Carers UK which generated a positive result in extending Carers’ enhanced rights as promoted in the Care Act, so that parent carers were included.

“Following the recent discussions with representatives of parent carers and local authorities, I recognise a strong case has been made for consolidating existing legislation on parent carers into the Children Act 1989. Putting all the relevant legislation in one place may help to ensure parent carers are better able to understand it and local practitioners are able to implement it effectively. We have also heard powerful arguments in favour of streamlining the legislation to take a more consistent approach...”

and ... “As the noble Baroness, Lady Pitkeathley, said, she and I also had a further meeting last week with my noble friend Lady Tyler and representatives of parent carers. The meeting was extremely informative and moving and I would like to thank Caroline, Sarah and Sherann for taking the time to share their experiences with me and officials.”

Lord Nash, House of Lords debate January 2014


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CDC Council for Disabled Children; member of the Council and Partnership BoardThe CDC Council is the wider stakeholder group for CDC where currently over 120 member organisations from every area of society with ambitions to influence for the better the lives of disabled children and young people meet termly to discuss and debate a variety of disabled children’s issues. Council meetings bring the whole sector together to debate key policy issues with each other, with Ministers and other government representatives.

As well as attending the termly CDC Council meetings, council members have access to the latest policy and practice information relating to disabled children. The NNPCF has also had invitations to conferences and workshop sessions on key policy and practice issues and has provided another avenue through which we have been able to influence the development of the Children and Families Bill into the current Act and of course ensure that the Code of Practice it contains was at all times mindful of the aspirations of Parent Carers as well as our children.

James Lind Alliance Childhood Disability Research Priority Setting Partnership This partnership has been set up to look at possible areas of Research for the next 10 years. A survey was sent out to ask the views of clinicians, parents, young people with disabilities and practitioners and over 700 responses were received. These has been distilled into research questions and it is the Priority Setting Panel’s role to look at the possible lines of research before a second consultation is done to establish a top 10 questions that could be the subject of research over the next 10 years. The role of the NNPCF has been highly valued by the group as we are able to bring the voice of parents to what can be an emotive subject and sometime explain why parents feel that particular strategies are important to them and their families and so requires further research. This project will be completed following the second survey.


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Young person speaker from EPIC and his Mum


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InControl Residential2 members of the NNPCF steering group were invited to present at a 2 day Residential which was looking at Personal Health Budgets. The subject of our presentation was “What the Code of Practice means to us” local authorities from around the country were present along with parents. This residential was hugely helpful in getting across to local authorities the strategic work that had been done by the NNPCF at a national level in addition to the work that had been done /was being by many local PCFs at a local level.

Early Support Advisory PanelThe NNPCF were invited to attend the already established Advisory Panel following the attendance at a NNPCF steering group meeting by Rita Wiseman, when it was felt that the voice of parent carers would add to the diversity of the panel. There have been 3 meetings this year and much of the discussion has been around the continued role of Early Support in assisting Local Authorities in implementing the reforms. Currently under discussion is the Early Support “App” which as not been as successful as had been hoped. In addition we have been briefed about the proposed Independent Support programme and how that may impact on the work that is being done by Early Support. The meetings are attended by some Pathfinder Champions and by members of national charities who have an interest in early interventions particularly around speech and language. This network has enabled organisations who do not normally work together to share expertise to help with the SEND reforms.

Parliamentary Under Secretary of State for Children and Families, Edward Timpson MP, Sarah Thomas and Sue North


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NNPCF Plans for the futureFive Year Aspirations 2011-2016

In this five year period, we would want to see the NNPCF to have made a difference to the lives of families of disabled children. Across all sectors, the NNPCF seeks to achieve meaningful participation of parent carers in decision-making processes (planning, delivery and scrutiny) at local, regional and national levels.

We aim to:n raise aspirations, achievements and quality of life of disabled children and young people,

their siblings and parent carers

n to be a catalyst for change promoting a solution focussed approach and meaningful partnership working

n raise awareness, and understanding in society to resolve preventable challenges for disabled children and young people and their families

n enable NNPCF to become an active and valued partner in ongoing planning and delivery of improved responsive and relevant services

n a nd to reduce the daily experience of fighting to access fair and dependable support so that parent carers and their families can live ‘ordinary lives’.

External Relations1. Parent carers speaking for parent carers as the embedded approach at local, regional and

national level.2. Meaningful and influential partnership working with NNPCF embedded within key advisory

and implementation groups at national level, and across service provider and commissioner boundaries.

3. Established a regional network of active local forums developing good practice solutions that meet local need.

4. Effective external communication systems that enhance and facilitate timely multi directional dialogue with key partners and general public (local/regional/national – all tools including website/publications etc).

5. Encourage joint working with partner organisations, shared use of resources, and maximising impact of parent carers experience and expertise.

Internal Organisation6. Establish an organised, independent and national team of expert parent carers, underpinned

by effective administrative support, robust transparent governance processes and a regional network.

7. Build effective internal communication systems that enhance and facilitate multi-directional dialogue with parent carers (local/regional/national).

8. Introduce a more democratic and representational system that values and includes all sectors of parent carer community.

9. Develop a range of funding sources and relationships to provide ongoing and project based independent resources.

10. Build a resource of good practice examples solutions for both local forums and the key challenges for families of disabled children.

Constitution


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Constitution continued



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Documents

Empower - Contact a Family · National Network of Parent Carer Forums ‘Our Strength Is Our Shared Experience’ Progress report National Network of Parent Carer Forums Engage Enable