Katayoon Bamdad

Final Report

Cancer Network

Macmillan Cancer Survivorship Project

Surrey and Mid Sussex

(Implementation of the Recovery Package)

2014-2016

Report Complied by

Katayoon Bamdad

Macmillan Cancer Survivorship Project Lead

Final Report Macmillan Cancer Survivorship Project-KB

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Permission should be sought from the author to reproduce any substantial part of

this report. This includes any text, illustrations, charts, tables, or other material

from previously published sources in this report.


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Content

1. Executive Summary ................................................................................................... 3

2. Introduction ................................................................................................................ 5

2.1 Purpose of Macmillan Cancer Survivorship Project Surrey and Mid-Sussex ....... 6

2.2 The Recovery Package ........................................................................................ 8

2.2.1 The Recovery Package’s Elements ............................................................... 8

2.3 Surrey and Mid- Sussex Demographic Profile...................................................... 9

3. Survival Rate in Surrey and Sussex ......................................................................... 11

4. The Mortality and Incidence Rate............................................................................. 12

4.1 Colorectal cancer ............................................................................................... 12

4.2 Lung Cancer (5th most common cancer, second highest mortality rate) ........... 13

4.3 Prostate Cancer (2nd most common cancer, highest mortality rate) .................. 14

4.4 Breast Cancer (3rd most common cancer, 3rd highest mortality rate) ............... 15

5. MCS Project’s Goals and Objectives ....................................................................... 16

6. MCS Project’s Expected Outcomes ......................................................................... 18

7. MCS Project’s Achieved Outcomes ......................................................................... 18

7.1 Implementation of the Treatment Summary (TS) ............................................... 18

7.2 Implementation of the Holistic Needs Assessment (HNA) ................................. 19

7.3 Implementation of the Health and Wellbeing Events .......................................... 20

7.4 Implementation of the Cancer Care Review (CCR) ............................................ 21

7.5 MCS Project’s Additional Achievements ............................................................ 22

8. The Impacts of the Implementation of the RP .......................................................... 23

9. Service Users’ Feedbacks: Post- Implementation of the RP .................................... 24

10. Recommendations ................................................................................................ 27

11. Lessons Learned ................................................................................................... 29

11.1 Health Care Professionals’ Engagement Prior the Project’s Initiation ............. 29

11.2 Introduction of the project to the local CCG prior to the Project’s Initiation ..... 29

11.3 Key Decision Makers and Commitment Arrangements ................................... 29

11.4 Project’s Admin Support ................................................................................. 30

12. Appendices ............................................................................................................ 31

12.1 Appendix A ..................................................................................................... 31

12.2 Appendix B ..................................................................................................... 35

12.3 Appendix C ..................................................................................................... 59


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1. Executive Summary

More than half of people in England will be diagnosed with cancer in their lifetimes1.

There are around 280,000 new diagnoses every year, a number which has been growing

by around 2% per year. On current trends, we can therefore expect to see a further

25,000 to 30,000 new diagnoses each year by 2020, rising to 80,000 additional cases

each year by 2030. These figures emphasise the need to plan now for the increased

demand we can expect to see, if outcomes are to be maintained or improved. Currently,

there are an estimated 2.5 million people in the UK who have had a cancer diagnosis

(Macmillan analysis based on extrapolation of 2010 and 2020). And by the end of 2016,

more than a thousand people will be diagnosed with cancer every day in the UK

(Macmillan Cancer Support estimates, 2014). This statistic highlights the significance of

cancer survivorship and the importance of efforts to illustrate and address the concern of

cancer survivors. The rise in the number of cancer survivors is in part due to the ageing

population a result of an advanced health care system which deals with premature

mortality over the last 50 years and now less people likely to die from other conditions,

such as cardiovascular disease.

However, Many cancer survivors are at increased risk for long-term morbidity related

either to the cancer itself, to pre-existing comorbidities or to exposure to therapy and they

also experience physical and psychological difficulties which can be severe, debilitating,

and sometimes permanent (McCabe et al., 2013). For this reason, in the UK an initiative

arose from the Cancer Reform Strategy (2007)2namely National Cancer Survivorship

Initiative (NCSI). NCSI is a joint initiative between Macmillan and the Department of

Health. Through NCSI, Macmillan proposed that a new system of aftercare should be

introduced, based on four key principles:

1. Assessment post- treatment

2. A care plan drawn up in partnership between the patient and healthcare

professional

3. Risk stratification of the patient to determine the likely level of ongoing support

needed and to help inform the care plan

4. Supported self-management of their condition

Macmillan Cancer Support has funded this Macmillan cancer survivorship (MCS) project

for 23 months with an aim to transform the way in which follow up and after care services

are delivered for those who are living with and beyond cancer at the four acute hospitals

in Surrey and Mid-Sussex in order to create new and improved survivorship care services

to optimise health related quality of life among cancer survivors of the four tumour groups

across the four hospitals. The four tumour groups are:

1. Lung

2. Prostate

3. Breast

4. Colorectal

1 Based on projections for people born after 1960 2 Cancer Reform Strategy, Department of Health (Dec 2007). http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/dh_081006


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The main goal of the project is the implementation of the cancer survivorship’s Recovery

Package (RP). The RP was developed and tested by the National Cancer Survivorship

Initiative (NCSI) - a partnership of Macmillan Cancer Support, Department of Health and

NHS England - to assist people living and beyond cancer to prepare for the future, and

identify their individual concerns and support their individual needs. RP consists of

treatment summary (TS), holistic need assessment (HNA), cancer care review (CCR)

which is an assessment carried out by general practitioners (GPs) and health and

wellbeing events or programmes (figure 1). The project will provide a framework for the

general survivorship care and management of potential long-term and/or late effects of

cancer and its treatment that survivors of the abovementioned tumour groups may

experience across the four acute hospitals. The four hospitals are:

Royal Surrey County Hospital NHS Foundation Trust (RSCH)

Ashford and St. Peter’s Hospital NHS Foundation Trust (ASPH)

Surrey and Sussex Health Care NHS Trust (SASH)

Frimley Park Hospital NHS Foundation Trust (FPH)

It is hoped that the outcome of this project provide the additional support and education

for those who are living with and beyond cancer, their families, carers and educate health

care professionals in both the specialist and primary care who work with adult cancer

survivors in the post treatment period about the cancer survivorship and the RP.

Additionally to ensure the best possible outcomes for cancer survivors are achieved, the

project aims to:

Raise awareness of the clinical, functional, psychological and socioeconomical

consequences of cancer and its treatment

Define quality health care for cancer survivors and identify strategies to achieve it;

Improve the quality of life of cancer survivors through designed health and wellbeing

event, living well programme, self-management programmes and where possible

end of treatment clinic for those who are living with and beyond cancer.

Figure 1. Recovery Package which explains how the Recovery Package fits into an overall support of self-management for people living with and beyond cancer


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2. Introduction

The cancer story in the UK is changing. The latest statistic indicate that there will be 2.5

million people living with or beyond cancer in the UK in 2015, a figure that is increasing

by 3.2% each year and a trend that, if it continues, could see 5.3 million people living with

cancer in the UK by 20403. There are more than 200 different types of cancer, but four

tumour groups account for more than half of all new cases – breast, lung, bowel

(colorectal) and prostate.

Cancer is the second largest cause of death in the UK behind cardiovascular disease.

Substantial resources are already dedicated to cancer care in the UK (in 2008, this

amounted to £5.13 billion in direct costs to the NHS, with a further£0.36 billion for

hospice care4).

As the UK’s population ages, cancer treatment and care will absorb an increasing

proportion of healthcare spending. These numbers say little of the devastating personal

impact that living with cancer can have on individuals, their families and carers.

Advances in medicine and treatment have resulted that people now live longer with

terminal cancers and have to cope with what that means in terms of quality of life,

including lowered immunity to other long-term conditions and the long-term side effects

that any cancer treatments may have. It is important to recognise that the emotional and

physical effects of cancer do not cease because a patient has completed their treatment.

‘It is a myth that people who are cured of cancer are therefore

well. Lots of people survive cancer but at least a quarter

have unmet needs from their cancer and treatment.

New cancer and treatment related illnesses emerge

months, years, or decades later. Survivors experience

more chronic illness and need to be made aware

that lifestyle changes are important’

(Macmillan, 2011)

It is also important to note that the focus of cancer care has traditionally been on the

treatment and prevention of cancer, with comparatively little focus placed on aftercare

and survivorship. This is beginning to change through, for example, the:

• National Cancer Survivorship Initiative (NCSI) (England)

• Scottish Government’s working group on survivorship

• Northern Ireland Assembly’s Service Framework for Cancer Treatment and Care

(which states that all patients should receive a holistic assessment at the end of

each treatment episode and be actively involved in decision making on their

aftercare arrangements)

• Welsh Government’s Cancer Delivery Plan (which states that each health board

should assign a named key worker to assess and record a care plan for everyone

diagnosed with cancer)

3 Facts and Figures, Macmillan Cancer Support 4 The Cost of Cancer, The Policy Exchange, 2010


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The National Cancer Survivorship Initiative (NCSI) was established in January 2010 to

endorse and improve outcomes strategy for cancer (Department of Health, 2011). The

NCSI is co-led by the Department of Health and Macmillan Cancer Support and it was

established to understand the needs of those living with cancer and develop programme

of care that meet cancer survivors’ needs and to support a healthy and active life.

Traditionally, the focus of cancer services is on cancer as an acute illness treated and

followed up by specialist hospitals, however NCSI considers the traditional follow up as

out of date care model which is not tailored to cancer survivors’ need. Additionally both

national and local evidence suggest that traditional follow-up do not support patients’

care with the variety of issues that may arise as a direct result of their cancer or of the

treatment of cancer. NCSI Vision report (Department of Health, Macmillan Cancer

Support, NHS Improvement, 2010) focuses in five shifts in cancer survivors’ care. They

are as follows:

Strategically change the approach to care and support for cancer survivors

A major move towards the assessment of cancer survivors holistic and

psychological needs

Promoting and supporting self-management

Move from traditional clinical follow up to models of survivorship care which is

tailored to cancer survivors’ need

Move from measuring clinical activity to measuring cancer survivors’ experience

and outcome of their care through routine use of patient-reported outcome.

2.1 Purpose of Macmillan Cancer Survivorship Project Surrey and Mid-Sussex Surrey and mid-Sussex Macmillan Cancer survivorship (MCS) project was funded by

Macmillan cancer support and it aims towards an integrated approach to the delivery of

aftercare for those who are living with and beyond cancer. The project has provided a

framework for the general survivorship care and management of potential long-term

and/or late effects of cancer and its treatment that cancer survivors may experience.

The main purpose of the project was to improve the quality of life (QOL) of those who are

living with and beyond cancer. Important components of this approach are as follows:

Implementation of Recovery Package (RP) in order to improve communication, the

quality and equity of care for those who are living with and beyond cancer. The RP

will enables health professionals to support and help those who are living with and

beyond cancer to return to as near a normal lifestyle as possible and manage

clinical and non-clinical consequences of cancer and its treatment such as

psychological problems and socioeconomical difficulties such as financial, return

to work and unemployment.

Prevention of recurrent and new cancer and of other late effects

Surveillance for cancer spread and recurrence


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Coordination between specialist care providers (secondary care), primary care

providers, clinical commissioning groups (CCGs), charities and local services. A

coordinated, commissioned packages of care across clinical services and

organisational boundaries, with prompt access back into secondary care and

seamless transition to normal life is essential for those who are living with and

beyond cancer.

The project has examined cancer survivorship care and has implemented the RP for four

tumour groups at the four acute hospitals which are:

1. Royal Surrey County Hospital NHS Foundation Trust (RSCH)

2. Ashford and St. Peter’s Hospital NHS Foundation Trust (ASPH)

3. Surrey and Sussex Health Care NHS Trust (SASH)

4. Frimley Park Hospital NHS Foundation Trust (FPH)

The general objective of this project mirrored the goals of the NCSI, which cites the

following 5 key shifts5 as being fundamental to achieving this vision:

1. A cultural shift in the approach to care and support for people affected by cancer

to a greater focus on recovery, health and well-being after cancer treatment.

2. A shift towards holistic assessment, information provision and personalised care

planning. This is a shift from a one-size fits all approach to follow up, to

personalised care planning based on assessment of individual risks, needs and

preferences.

3. A shift towards support for self-management. This is a shift from a clinically led

approach to follow up care, to supported self-management based on individual

needs and preferences. This approach empowers individuals to take on

responsibility for their condition supported by the appropriate clinical assessment,

support and treatment.

4. A shift from a single model of clinical follow up, to tailored support that enables

early recognition of the consequences of treatment and the signs and symptoms

of further disease, as well as tailored support for those with advanced disease.

5. A shift from an emphasis on measuring clinical activity, to a new emphasis on

measuring experience and outcomes for cancer survivors’ through routine use of

Patient Reported Outcome Measures in after care services.

5 http://www.ncsi.org.uk/wp-content/uploads/Vision-Chapter-3-Summary-of-the-5-Key-Shifts.pdf


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2.2 The Recovery Package The Recovery Package (RP) is made of several elements which, when delivered

together, can greatly improve outcomes for people living with and beyond cancer. It is

central to Macmillan’s objective of achieving its nine outcomes (see figure 2)

Figure 2. Macmillan’s nine outcomes

The purpose of the RP is to support a more systematic and proactive approach to cancer

care and rehabilitation to aid recovery. This will improve outcomes for cancer survivors,

reduce inappropriate use of hospitals and enable people to live a health and active life.

The RP also emphasises on empowering patients to manage their own care by giving

them the appropriate information and support to do so.

The RP is a shift in focus from a standard 'one size fits all' approach to one where

follow-up care is truly patient-centred and where clinical, psychosocial and practical

needs are assessed and managed effectively.

Furthermore, the RP is a more integrated model of care, through a better coordinated

approach to shared documentation and improved information giving between secondary,

primary and community care and cancer patients.

2.2.1 The Recovery Package’s Elements The Recovery Package is made up of the following elements (see figure below):

• A Holistic Needs Assessment (HNA) and care planning at key points of the care

pathway.

• A Treatment Summary completed at the end of each acute treatment phase and

sent to the patient and GP.

• A Cancer Care Review completed by the GP or practice nurse to discuss the

patients’ needs. The review should happen within six months of the GP practice

being notified that the patient has a cancer diagnosis, but this should be the start

of an ongoing conversation required across the cancer care pathway.


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• An education and support event, such as Health and Wellbeing events, to prepare

the patients for the transition to supported self-management. The event should

include advice on relevant consequences of treatment, recognition of issues and

who to contact. They should also provide information and support on work and

finance, healthy lifestyle and physical activity.

2.3 Surrey and Mid- Sussex Demographic Profile The population of Surrey, counted by the 2011 Census was 1,132,400; Surrey is a

county in the south east of England, it also borders Kent to the east, East Sussex and

mid-Sussex to the south-east, West Sussex to the south, Hampshire to the west and

south-west and Berkshire to the north-west6.

The Macmillan cancer survivorship covers four hospitals in Surrey and mid-Sussex

(refer to section 2.1 and figure 3). There are 8 CCGs which are clinically responsible for

the planning and commissioning of health care services for each participated hospital in

this project. The 8 CCGs are:

Guildford and Waverley CCG

North West Surrey CCG

North East Hampshire & Farnham CCG

Surrey Heath CCG

Crawley CCG

Horsham and Mid Sussex CCG

Surrey Downs CCG

East Surrey CCG

6 https://www.surreyi.gov.uk/ViewPage1.aspx?C=resource&ResourceID=928


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Figure 3. Four Hospitals participated in the MCS Project and Local CCGs

Source: http://www.abigailkitt.co.uk/nhs.html

In 2012/13, 2.26% of the registered population of Surrey and its neighbours were

recorded as living with cancer. This compares with an England prevalence of 2.2 %

(table 1). This higher prevalence may be attributed to better survival rates. Survival after

diagnosis is commonly measured at 1 and 5 years and in Surrey and its surrounding

neighbours for breast, bowel, lung and prostate cancers are higher than the national

average7. Table 2 demonstrates the survival analyses for Surrey and Sussex (compared

to total in England-adults diagnosed 1997–2012 and followed up to 2013)8

7 http://www.surreyi.gov.uk/ViewPage1.aspx?C=Resource&ResourceID=1659 8 http://www.ons.gov.uk/ons/dcp171778_389219.pdf

http://www.ons.gov.uk/ons/dcp171778_389219.pdf


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Table 1. Cancer Prevalence rates by CCGs 2013-2014

Table 2. Number of patients included in analyses, by cancer: England and Surrey and

Sussex- adults1 diagnosed 1997-2012 and followed up to 2013

Cancer Site

Oesophagus Stomach Colon Lung Breast Cervix

England 99,394 105,642 295,576 488,287 565,861 38,555

Surrey and Sussex 5,488 4,166 16,754 21,838 32,428 1,471

Note:

1. Adults aged 15-99

3. Survival Rate in Surrey and Sussex

Survival after diagnosis is commonly measured at 1 and 5 years. Nationally, the relative

five-year survival rate is over 80% for breast and prostate cancer, and around 10% for

lung cancer. One in five people with lung cancer die within just one month of diagnosis

and are more than 10 times as likely to die within a month of diagnosis as those with

breast cancer.

For Surrey and Sussex, because of the time lag with survival figures, data are only

available on old boundaries, i.e. for Surrey Primary Care Trust and SWSH Cancer

Network. For breast and lung cancers, Surrey PCT and SWSH Cancer Network had

higher 1 year (2008-2010) and 5 year (2004-2006) relative survival rates. Prostate one

year survival was lower than England for SWSH Cancer Network (Table 3)7.


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Table 3. 1 and 5 year relative survival rate (% of patients)

Source: National Cancer Intelligence Network via the Cancer Commissioning Toolkit, 2014. A confidence interval (CI) is the range of values within which we are 95% confident that the true population value lies. CIs have upper and lower values. LCI = Lower Confidence Interval UCI = Upper Confidence Interval.

4. The Mortality and Incidence Rate

The mortality rate from all cancers combined per 100,000 population is significantly lower

in Surrey (246/100,000) than the national rate (279.4/100,000)7. The mortality rate for this

project’s four tumours groups are as follows:

• Colorectal or bowel cancer is the 4th most common cancer in Surrey and has the 4th

highest mortality rate;

• Lung cancer is the 5th most common cancer in Surrey and has the highest mortality

rate;

• Prostate cancer is the 2nd most common cancer in Surrey and has the highest

mortality rate;

• Breast cancer is the 3rd most common cancer in Surrey and has the 3rd highest

mortality rate.

The mortality and incidence rate for each tumour group have been explained in details in

the following sections.

4.1 Colorectal cancer Bowel cancer affected 782 people in Surrey in 2012. The incidence of colorectal cancer

in Surrey is below that of both the South East and England. The Surrey rate was falling

gradually from 1995 to 2003 but has risen since. In 2012, Reigate and Banstead had the

highest incidence rate and Guildford the lowest. Incidence is higher in men than women,

with colorectal cancer the 2nd most common cancer in men7. The mortality rate from

colorectal cancer for Surrey is lower than for both the England and South East, with

Spelthorne recording the highest mortality rate and Woking the lowest. Mortality from

colorectal cancer is higher in men than women (figure 3 and 4)7.


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Figure 4. Incidence of colorectal cancer – persons all ages SRR, 1995 – 2012

Source: Cancer incidence yearly trend, Health and Social Care Information Centre, 2015

Figure 5. Mortality from colorectal cancer all ages – DSR 2011-2013

Source: Mortality specific conditions, Health and Social Care Information Centre, 2015

4.2 Lung Cancer (5th most common cancer, second highest mortality rate) 564 patients were diagnosed with lung cancer in 2012 in Surrey7. The incidence of the

lung cancer in Surrey is below both the South East and England and has been falling

gradually since 1995. Runnymede has the highest incidence of lung cancer and Guildford

and Waverley, the lowest (figure 5 and 6)7. However, the incidence rate in Surrey is

higher among men than women, as expected from past smoking.


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Figure 6. Incidence of lung cancer – persons all ages SRR - 1995 - 2012

Source: Health and Social Care Information Centre, Cancer incidence yearly trend, 2015

Figure 7. Mortality from lung cancer all ages – DSR 2011-2013


4.3 Prostate Cancer (2nd most common cancer, highest mortality rate) Rates of prostate cancer increase as men get older, with most cases in men aged 65 or

older. For reasons that are not understood, prostate cancer is more common in men who

are of Afro-Caribbean or African descent and less common in men of Asian descent7.

Prostate cancer is the most common cancer in men in Surrey, accounting for 13.6% of all

cancers. The incidence rate in Surrey, similar to the South East and England, and it has

increased since 1995. Surrey Heath has the highest reported incidence and Elmbridge

the lowest (figure 7 and 8)7.


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Figure 8. Incidence of prostate cancer – all ages SRR - 1995 - 2012


Figure 9. Mortality from prostate cancer all ages – DSR 2011-2013


4.4 Breast Cancer (3rd most common cancer, 3rd highest mortality rate) 942 new cases of breast cancer were diagnosed in 2012 in Surrey. The incidence rate of

breast cancer in Surrey is similar to that of the South East Region and England as a

whole. Within Surrey, Mole Valley (162.7) has the highest incidence rate and Elmbridge

(72.4), the lowest. Breast cancer mortality for Surrey and its neighbours is similar to the

England and South East average. Guildford has the highest mortality rates and Reigate

and Banstead the lowest (figure 9 and 10)7.


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Figure 9. Incidence of breast cancer all ages: females SRR – 1995 – 2012


Figure 10. Mortality from breast cancer all ages – DSR 2011-13


5. MCS Project’s Goals and Objectives

The Macmillan cancer survivorship project responded directly to the Cancer Reform

Strategy (2007). The Strategy states that survival rates are improving for some cancers

year on year and that patients‟ experience of care is improving; it also identifies a

number of challenges England faces in responding to an increasing incidence of cancer

as cancer patients live longer. To mirror the cancer reform strategy (2007), the

objectives of this project were:

Collaboration between the four hospitals to improve current cancer survivorship

care provision at all four centres

Collaboration between clinicians (secondary and primary care), non-clinicians,

charities, local services and local clinical commissioning groups (CCGs). This

collaboration includes but not limited to engagement and involvement of the GPs,

district nurses and CCGs into survivors’ on-going care delivery.


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Some of the local CCGs in Surrey and mid- Sussex have already highlighted a number of

key areas where improvements should focus. Among which are:

Better identification of the prevalence gap for individual practices across common

long term conditions and related work with practices to reduce those gaps;

Early diagnosis;

Address the quality of life for people living with and beyond cancer.

Cancer survivorship is also now a key priority for the South East Coast Clinical Network

(SEC CN), which replaced the Surrey, West Sussex and Hampshire (SWSH) Cancer

Network in 2013. SEC CN has identified 3 priorities to improve cancer care locally9.

These priorities are:

1. The prevention of premature morbidity and mortality from cancer, matching the

levels of the best in Europe;

2. To improve survival and health outcomes for cancer patients related to cancer

treatment;

3. To increase patients ability to self-manage their recovery.

Additionally, the project also aimed to:

implement Macmillan Recovery Package and work collaboratively with patients to

ensure patients to make any lifestyle changes that results in reduction of any

future health related risks,

engage with and involve local services and voluntary sector/charities to create

programmes which meet cancer survivors’ needs,

ensure that all cancer patients have an arranged and understood after treatment

care plan to enable them to transit from cancer patient to cancer survivor (

establishment of end of active treatment assessment clinic and self-management

programmes),

ensure that treatment summaries will be created and provided to the patients at

post patient’s active treatment ( after each episode of treatment) and ensure its

accessibility to clinicians across acute hospitals and primary care providers such

as GPs,

implement holistic need assessment and follow-up for cancer survivors which

would be an adjunct to current secondary follow-up,

design a programme for the health and wellbeing event which can be used and

replicated across four hospitals,

where possible, establish a specialised end of treatment assessment/clinics in

which multidisciplinary care is provide including psychological care,

establish an efficient survivorship website which offers a ‘directory of services’ for

patients to choose their preferred programme.

9 South East Coast, Strategic Clinical Network for Cancer Plan http://www.secscn.nhs.uk/files/1314/0197/3144/SEC_CANCER_SCN_Plan_on_a_Page.pdf


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6. MCS Project’s Expected Outcomes

The expected outcome for this project was divided to three different categories. They are:

Outcome for patients and carers

Improving outcomes for patients by promoting a holistic model of care which is

tailored to the individual needs of the patients.

Implementation of each elements of Recovery package to enable patient choice and

managing the long-term after-effects of cancer more effectively.

Outcome for health professionals

Reduction in outpatient activity associated with cancer survivors coming back to the

hospital where they have been treated, will allow health professional to devote more time

to complex case management and result in greater productivity.

Outcome for the participated hospitals

Managing rising demand for outpatient appointments and potential financial savings to

commissioners associated with the diversion of low risk follow-up to self-managed and

community-led pathways.

Outcome for the CCGs

As mentioned above potential financial saving to their contracted hospital will allow them

to invest to other area of health improvement for those who are living with and beyond

cancer. Attaining Knowledge about CCR which should be implemented by the GPs is one

of the most expected outcomes of this MCS project

7. MCS Project’s Achieved Outcomes

By the end of the project, the TS and HNAs have been successfully implemented for all

the of the four tumour groups across the four hospitals with the exception of one hospital

where two tumour groups have still not implanted the TS in their practice and one tumour

group has yet to implement the HNA. The tabular reports in Appendix A demonstrate the

progress of the implementation of TS and HNA for four tumour groups at each

participated hospital.

7.1 Implementation of the Treatment Summary (TS) The implementation of the TS for each tumour group was started in collaboration with

related CNSs and lead cancer nurses at each centre. Depending on the local patient

administration system (PAS) at each participated hospital, a different preparation styles

for TS was considered. The overall aim was the integration of the TS into clinical practice

across the project’s four tumour groups.

Effective communication between the specialist cancer team and the GPs was the

paramount importance in the delivery of high quality of TS in this project, therefore some

of the CNSs and clinicians have decided to use the TS template which is readily available

in the Somerset Cancer Register, however most of the CNSs have decided to design

their own template with the quality and content of the summary information

communicated to the GPs, particularly in relation to the risks of future problems (related

to that specific tumour group), ongoing follow up and referral arrangements and / or the


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monitoring and management required by the GPs. Accordingly 15 treatment summaries

have designed by the CNSs and St. Luke’s Radiotherapists who provide treatments at

RSCH and SASH’s patients

The TSs designed by the CNSs included the following key elements:

• What service referral (clinical and non-clinical) has been made for the patient?

• Provide a summary of their identified/eligible needs and potential barriers after

treatment

• Identify the potential side effects the patient may experience (short-term, late or

long term effects)

• Identify symptoms and signs the patient and GP should look out for? (Alert

symptoms for patient and GPs to monitor for and any information that requires

referral back to the specialist team)

• A number of lifestyle/ behaviours can affect patient ongoing health, including the

risk for the cancer coming back or developing another cancer ( i.e. diet, alcohol

use, exercise)

• Indicate who to contact and how, in case of changes, emergencies and etc. (Key

contact)

Since cancer patients have most of their chemotherapy and radiotherapy treatment at

RSCH, it was essential that the TS was implemented for those cancer patients who are

undergoing these treatments. Therefore, chemotherapy and radiotherapy team at RSCH,

both have designed a separated TS to meet the need of their patients. Appendix B

contains the TS templates which have designed by the CNSs and radiotherapists of the

participated hospitals in this MCS project.

7.2 Implementation of the Holistic Needs Assessment (HNA) For the implementation of HNA, it was vital that the health professionals and CNSs for

the four tumour groups adapt an effective way to address the unmet needs of the cancer

patients and provide appropriate support and care planning to their cancer patients. It

was also essential to identify and promote the confidence needed to implement HNA into

clinical practice among CNSs.

It was accepted that, for many CNSs, this might mean extra work; consequently, it was

decided to ensure the CNSs chose their preferred method of the delivery of HNA. This

flexibility in choosing the delivery method was believed to be important in helping CNSs

to recognise the range and extent of the needs of their cancer patients, and an emphasis

is placed on their ability to motivate and improve their awareness in relation to an

effective HNA and care planning.

Implementation of HNA was started for most of the four tumour groups using Macmillan

free assessment and care planning folder containing triplicate HNA paper forms.

However some of the CNSs decided to use the same form which is readily available in

the Somerset Cancer Register. The delivery of the assessment of each patient again was

decided by each CNS or health professionals. Some of the CNSs and health

professionals decided to sit with the patients and talk through the form and then leave

them to complete it. Some others decided to have a telephone consultation with the

patient and go through the form with the patients over the phone.


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And finally some of the other health professionals give the HNA forms to their patients to

take home to complete and bring it back for their next follow up appointment. If at any

point during this process the patient decides not to complete the HNA form, they will be

free to do so without any requirement to give a reason. A copy of the HNA will be

recorded in the patient notes and the patient will keep a copy and a copy will be sent to

any other members of the multidisciplinary team, where it is necessary. Based on the

result of HNA patients then will receive further support and will refer to the additional and

external services in the hospital or in the community.

7.3 Implementation of the Health and Wellbeing Events The general purpose of the health and wellbeing events is to provide cancer patients and

their families/carers with the additional support and practical effects of living with cancer.

For this MCS project, the project lead has designed a programme for the health and

wellbeing event. The programme was nominated for the Patient Safety Award, 2015

under the “Cancer care” category. The programme was designed in a way to provide

information and support to meet the unmet needs of not only those who are living with

and beyond cancer but the needs of their families and their carers. The programme

covers a range of different topics from consequences of the cancer treatment,

psychological support, diet, physical activities and as well as more practical issues about

seeking financial benefits, carers’ support, and return to work.

The programme also addresses the management of potential long-term and/or late

effects of cancer and its treatment (i.e. psychological difficulties) that cancer survivors

may experience. The designed programme does not provide any information about the

cancer treatment but aims to give patients and their families the confidence and support

which they need during the day. The programme includes the following to ensure

patients receive maximum benefits:

Supporting a holistic approach by involvement of the exhibition of stands

supported by variety of volunteer and community sector (VCS) support

organisations, charities including cancer charities. This exhibition with variety of

the different organisations provides information and guidance to cancer patients,

their families and their carers on the day.

Creating a relax atmosphere

Signposting and providing information in simple terms

Offering empathy and understanding to the patients, their families and their carers

Patients interaction to share their experience and give each other encouragement

Information about practical and psychological issues

Focusing on patients’ role in maximising their own quality of life

One to one with the CNSs of all the tumour groups to give patients reassurance of

knowing support is there and to ensure the delivery of a patient-centred event.

Enabling patients and their families/carers to find out more about what matters to

them.


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The programme also includes different range of speakers from clinicians and

psychologists to dieticians as well as talks on more practical issues about seeking

financial benefits, carers’ support, advice on physical exercise and return to work.

The first health and wellbeing event was held at ASPH with the nominated programme on

February 2015. The event was a tremendous success with more than 100 cancer

patients (from all the tumour groups not only this project’s tumour group) attended the

event. After the success the first health and wellbeing event at ASPH, the project lead

introduced the successful programme to the local CCGs. As a result, the second health

and wellbeing event was held for all the FPH’s cancer patients by Surrey Heath CCG with

the collaboration of the Macmillan and cancer team at FPH. The FPH’s event was also a

massive success with more than 100 patients attended the event on October 2015. The

third health and wellbeing event was held at SASH on November 2015, with the same

programme and once again the event was a successful with more than 100 patients

attending the event. The fourth health and wellbeing event was held for RSCH’s cancer

patients on December 2015, which was also a successful event with more than 100

cancer patients also attending the event.

After each hospital hold their first health and wellbeing event, the CCGs from across all

four hospitals with Macmillan’s collaboration and support organised an additional event

with the same degree of success and patients’ turn out at each hospital. As of May 2016,

Surrey Heath CCG, Guildford and Waverley CCG, East Surrey CCG and North West

Surrey CCG have already agreed to organise additional health and wellbeing event for

their contracted hospital in 2016 and 2017.

Majority of the patients, their families and carers who attended the event (at each

hospital) have completed a short evaluation form to ensure their voice is heard and have

been captured which will then directly influence the improvement of the future events.

After analysis, majority of the feedback was positive for all the four events. Appendix C

contains the programme of the health and wellbeing events which have been hold during

the life of this project at each participated hospital.

7.4 Implementation of the Cancer Care Review (CCR) It was decided that the implementation of CCR should be in collaboration with the CCGs

who hold contract with each participate hospital. The CCGs’ involvement is crucial for the

implementation of the CCR as they work closely with the GP practices. The discussion is

still underway with the CCGs of each participated hospital in relation to the

implementation of the CCR as our data collected as a result of this project suggests the

use of CCR is currently marginal or not existed across the GP practices who provide

primary care for the cancer patients of the four participated hospitals.

It is generally believed that GPs are the best person to carry out the CCR, however there

are increasing suggestions that practice nurses to be trained to carry out the CCR. There

are currently courses are running in the area by Macmillan which some of the practice

nurses have participated, however this is not prevalent across all the CCGs.


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Cancer survivorship is also now a key priority for the South East Coast Clinical Network

(SEC CN), which replaced the Surrey, West Sussex and Hampshire (SWSH) Cancer

Network in 2013. Since SEC CN works closely with each CCG, they have now developed

a dashboard which as of Februarys 2016, its number one priority is the implementation of

the CCR with the close collaboration with the CCGs across Surrey, Sussex and Kent.

7.5 MCS Project’s Additional Achievements

During the life of Macmillan cancer survivorship project’s period, the following extra-

activities have been undertaken:

The Macmillan cancer survivorship project has funded the head and neck “Moving

on” programme. Head and neck cancer team at RSCH with the collaboration of

FPH’s head and neck team have designed this programme. The programme has

been successful with a good patients’ turn out. The second round of “Moving on”

programme for the head and neck cancer patients will be starting in June 2016.

The majority of the chemotherapy and radiotherapy treatments are carried out at

RSCH, this means that those cancer patients who are being diagnosed at the

other three hospitals travel to RSCH to receive either or both treatments should

their treatment requires them. Therefore, it was essential that these cancer

patients are being provided with the TS. Project lead has collaborated with

RSCH’s radiotherapy and chemotherapy department and now each department

have designed their own TS templates. TS have been successfully implemented

for those patients who have their chemotherapy or radiotherapy treatment at

RSCH. It is important to mention, that to the best of author’s knowledge, St. Luke’s

radiotherapy department is the only radiotherapy department in the England which

has implemented the TS for their patients.

All the local CCGs as a result of this project have already highlighted and added a

number of key areas in their cancer strategy where improvements should focus.

Among which are:

The inclusion of the Recovery package

Better identification of the prevalence gap for individual practices across

common long term conditions and related work with practices to reduce those

gaps;

Address the quality of life for people living with and beyond cancer.

Cancer survivorship is also now a key priority for the South East Coast Clinical

Network (SEC CN), which replaced the Surrey, West Sussex and Hampshire

(SWSH) Cancer Network in 2013. SEC CN has now developed a dashboard which

as of Februarys 2016, its number one priority is the implementation of the cancer

care review (CCR) with the close collaboration with the CCGs across Surrey.

SEC CN has also introduced “Living with and beyond Cancer” Advisory group

which meets every three months, to discuss the implementation of the RP in

Surrey, Sussex and Kent.


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At the start of this MCS project, the project lead submitted a “Request for change”

to the Somerset Cancer Registry for the treatment summary’s template to be

modified in order to transform it into more informative and user friendly template.

This “Request for change” has been accepted by the Somerset Cancer Registry

and the new treatment summary template with the new features will go live in

October 2016.

Chemotherapy team at ASPH have started a “Nurse Led” clinic for haematology

cancer patients. In that clinic, chemotherapy CNSs provide their patients with TS

and patients undergo HNA. The clinic also offers referral and signposting to other

hospitals and community services.

In ASPH, the MCS project has brought attention to focus on the best practices for

long- term follow-up for cancer patients. For example, breast cancer team has

reviewed breast cancer follow- up and now has introduced a new model of care

which emphasises on the self-management for breast cancer patients.

8. The Impacts of the Implementation of the RP

The implementation of different elements of the RP has brought the following positive

impacts across four hospitals and local CCGs:

Before this project there was no or little knowledge about the concept of cancer

survivorship and the RP. Better knowledge of the “cancer survivorship” and

“Macmillan’s Recovery Package” for the health professionals specially CNSs and

oncologists across four trusts.

More confidence to question or challenge information and decision making for the

health professionals across four trusts.

More networking and better communication between trusts, local CCGs,

community services and charity and volunteer organisations in relation with cancer

survivorship. Several local CCGs now organise and coordinate the health and

wellbeing event for their contracted hospital.

Implementation of health and wellbeing events across four trusts has a vast impact

on collaboration between trust and external organisations who work with cancer

patients. It has also helped to provide information to cancer survivors, their

families and their carers for self-management.

The MCS project has also brought cancer patients with the similar condition

together to share their experiences specially as result of successful health and

wellbeing events across four hospitals ( see section 9)


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9. Service Users’ Feedbacks: Post- Implementation of the RP

The implementation of the PR for four tumour groups has provided a framework for the

general survivorship care and management of potential long-term and/or late effects of

cancer and its treatment that survivors may experience. It also ensures that their needs

are appropriately met by both secondary and primary care providers. To the best of

author’s knowledge, this is the only Macmillan cancer survivorship project that has been

so successful in England and its outcomes have brought significant changes over a short

period of time.

Therefore, it was essential to collect feedback from the service users. Feedback from

service users is an increasingly important component of quality programmes both in the

design of new services and the evaluation of existing services to ensure the effectiveness

of the implementation.

There are three key groups of service users that were vital for evaluation after the

implementation of the RP for four tumour groups; they are:

1. First and most important group is patients, their families and carers

2. The health care professionals ( i.e. CNSs) who are implementing the RP

3. The external stakeholders such as GPs as they are essential in creating a

coordinated cancer survivorship care for those who are living with and beyond

cancer.

For the first group, due to each trust’s core policy and confidentiality code of practice, the

author could not obtain the individual cancer patients’ feedback directly; particularly in

relation with the impact of HNA and TS. However breast CNSs at ASPH have surveyed

their patients who had received the TS and have had HNA. Below are some of the breast

patients’ feedbacks at ASPH:

“For me, this has been helpful because now I know what is next and where to get

support?”

“I feel confident, because now I know what signs and symptoms I should look for,

for any recurrence of my cancer. This has been so good for my self-management”

Furthermore at each health and wellbeing event at each hospital which more than 100

patients, their families and carers attended, patients were provided with a short survey to

evaluate the event and provide feedbacks; below are some of their feedbacks:

“I am writing to thank you for the Health and Wellbeing Day on 25th Feb. I was not

very sure how I would cope with the day as I was on my own and knew no-one.

Luckily I met another patient so I had some company and thoroughly enjoyed the

day. They also made me feel so welcome. Out of all the talks I found one so

inspiring. Having been on my own with no support since I finished my radiotherapy

in November last year, the psychologist’s presentation did inspire me, answered

some more of my questions and lifted me”

“The event was very informative and made me more aware of what I can achieve

through nutrition and exercise”


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“The information and talking to other patients and sharing their experience were

two important points for me out of this event”

“Very good range of speakers. Plenty of opportunity for patients to talk to one

another (good length of break time)”

“The event was a very good mix of relevant talks and information stand. The whole

atmosphere was up-beat and positive. An opportunity to meet people with specific

roles in cancer care”

“Cheerful and warm welcome. My daughter has just been diagnosed and started

treatment. It is so good and helpful and also we have everything talked about then

people (very kindly) very helpful. People on the stalls were very good. Practical

advice, presentation were helpful. Thank you and please continue it and carry on it

as often”

“Meeting others with the same cancer, hearing what services are available during

and after treatment were plus points for me and my husband”

“The event was excellent. Range of topics, patient and carer participation, thus

allowing empowerment for both parties. Opportunities for networking and talking

to other cancer patients”

“The fact that RSCH hold such an event is a huge progress. The event was local

and free parking was a huge plus. The event was well attended which was a great

opportunity to meet other cancer patients. A great range of speakers and well

informative”

“Different range of speakers, free parking and friendly staff and the feeling that we

are in the friendly environment made me feel so good that we don’t want to leave.

Please let us know when the next event is”

“A very supportive follow-on after care especially after my chemotherapy. Very

welcome atmosphere”

“The chance to gain more information, listen to others also the support

organisation and what they offer- the event was a very good mix”

“The feeling that someone cared enough to give additional information and advice

was very heart-warming”

“Meeting others with the similar cancer, hearing what services are available during

and after treatment was fantastic”


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The second groups, the health professionals have also shared their feedback and most

of the feedbacks have the same theme and that is, “the implementation of the TS and

HNA is time-consuming”. The following are some the feedback from some of the CNSs

across four hospitals:

“It is difficult to conduct HNA for some cancer patients as due to their condition

they don’t want to have this assessment so we need to be cautious whether they

are ready to have HNA or not?”

“We need admin support because of our clinical duties the admin part of the

implementation is time- consuming"

“My patients have said that HNA has been very satisfying for them, I spent one

hour for each patient as I do signposting and referral to other services. If I have a

one day clinic I only can see few patients but since my patients are happy, I feel

very proud”

Some of the local GPs who have received the TS from the four participated hospitals

have positively welcomed the change and expressed that the patients’ TS has improved

the communication between them and their patients. Below are some of the GPs’

feedbacks:

A GP from Guildford and Waverly area:

“Treatment summary that I have received has given me a strong sense of

reassurance, as we had more information about the condition of our patients and it

has helped both my patient and I to make informed decisions about their health”

A GP from the Northwest Surrey area:

“The TS which I have received from RSCH’s radiotherapy department is fantastic. It

covers everything in one page which is really good because as a GP we don’t have

enough time to spend with our patients.”


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10. Recommendations

The Cancer Taskforce Strategy outlines 96 recommendations for the health system, the

large majority of which are aimed at NHS England to take forward or to lead with others.

The report makes clear six strategic priorities for implementation Cancer task force10.

One of these strategies is the priority which is: Living with and beyond cancer – calling for

a roll out of the Recovery Package, to ensure a patient centred approach to care for

people who are affected by cancer10.

Although the current system for delivering care to the growing number of cancer survivors

across the participated hospitals in this MCS project is not inadequate; however there are

still gaps exist. The recommendations in this section focus on the attributes of an ideal

follow-up system that would meet the needs of individuals who are living with and beyond

cancer, their families and carers based on the cancer taskforce strategy10.

While as a result of this MCS project, the RP has been implemented across four tumour

groups at the participated hospitals, but they are still barriers in delivering cancer

survivorship care specially the RP.

The following recommendations are intended to ensure that stakeholders of this MCS

project contribute to the sustainability of the implementation of the RP and its extension

across all the other tumour groups in the participated hospitals.

1. Integration of RP within care pathway at the point of diagnosis, this will ensure that

Cancer patients are informed and educated about the RP at the point of diagnosis.

2. To ensure the sustainability of the RP across 4 tumour groups ( prostate,

colorectal, lung and breast) an evaluation system should be in place to enable

monitoring and reporting on progress and feed into future planning.

3. Lead cancer nurses across 4 hospitals should endorse the implementation of the

RP by hiring a cancer survivorship coordinator who supports the CNSs with the TS

and HNA administration.

4. Strategically planning by four hospitals to ensure that the successful health and

wellbeing programme reaches to every cancer patient. The introduction of the

health and wellbeing event at the point of diagnosis will ensure that the event will

influence every cancer patient.

5. Current version of health and wellbeing with invitation to all cancer patients has

been a tremendous success at each participated hospital in this MCS project.

Health and wellbeing event for a small group of patients is not and will not an

effective way to take future health and wellbeing events forward. Planning for the

health and wellbeing event for a small group of patients will be costly in the long

run and furthermore, expert speakers who currently, willingly and free of charge

present at these events across four hospitals will not participate for a small group

of patients. This has been tested in one of the participated hospital before the start

10 https://www.england.nhs.uk/wp-content/uploads/2016/01/item-5-cancer-taskforce-implmnt.pdf


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of this MCS project and it was not successful and consequently it was

discontinued.

Macmillan Cancer support should support the current version of this programme

and publicise it rather than discourage it. This can be done by considering a bid

for the health and wellbeing events across four hospitals as it will ensure the

sustainability of these events even for the short period of time (i.e. 2 years). This

short period of time then gives sufficient time to the local CCGs to plan and

strategies for future funding of these events across four hospitals.

6. Local CCG should take responsibility and work closely with the participated

hospitals and provide CCR training for the local practice nurses and GPs.

7. The RP is part of the Cancer Strategy 2015-202011. It states that better support for

people after treatment can deliver significant benefits in terms of improved quality

of life. It can also encourage behaviours that are more likely to prevent recurrence

or acute presentations back to the health service with late consequences of

treatment9. Therefore, local CCG should make the necessary investments

required to deliver a modern high-quality cancer survivorship service which include

the RP for those who are living with and beyond cancer in their locality.

8. Local CCGs should also develop a transparent and an accessible system which

supports GPs for their performance on cancer care reviews (CCRs), this should

include a sustainable strategy together with an ability to independently verify

CCRs’ assessments and monitoring.

9. Currently, there is no Recovery Package information booklet available for cancer

patients. Macmillan cancer support should consider developing a patient friendly

and concise information Recovery Package booklet which can be given to the

cancer patients at the point of the diagnosis. This practice along with the verbal

explanation from their health care professionals will inform and educate patients

about different elements of the RP and their benefits. For example, some of the

CNSs across four hospitals have confirmed that the concept of HNA is unknown to

the majority of the cancer patients.

11 http://www.cancerresearchuk.org/about-us/cancer-taskforce


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11. Lessons Learned

This MCS project provided the ability to implement the RP which ultimately have affected

cancer patients, the four hospitals’ health care professionals such as CNSs and external

stakeholders such as CCGs and local GPs. The following lessons learned originate from

the project lead’s experience and its purpose is to plan future projects of this MCS

project’s nature and capacity with much more preparation.

11.1 Health Care Professionals’ Engagement Prior the Project’s Initiation The application of the RP is greatly in scope and volume challenging. An adequate

education and instruction is essential for the effective implementation. A workshop for the

health care professionals such as CNSs across four hospitals should have been in place

prior the start of this project. An informative workshop which demonstrates the specific

elements of the RP by pinpointing available evidence is strongly encouraged. In the

absence of the adequate workshop, the future project leads may spend the majority of

their time in explaining the purpose and nature of the RP for cancer patients to the health

care professionals. By contrast, proper RP’s workshop prior the start of any project like

this MCS project would have helped future project leads to quickly and reliably engage

with the health care professionals.

11.2 Introduction of the project to the local CCG prior to the Project’s Initiation With the pace of change moving to implement the RP for those who are living with and

beyond cancer, particularly as a result of the cancer strategy 2015-202011, it is essential

that CCGs are actively engaged with the key stakeholders at the acute hospitals from the

outset of projects such as this MCS project. This will form part of whether a CCG is

deemed ready and authorised to hold commissioning responsibilities for the

implementation of the RP mainly for the CCR application. Whilst CCGs have a

responsibility to communicate with their constituent hospital and local health

professionals, including GPs, it is vital that robust communications and engagement are

established with all the local CCGs prior the start of any project such as this MCS project.

11.3 Key Decision Makers and Commitment Arrangements A large scale and multicentre project such as this MCS project, requires strong

arrangement for the full commitment of the key decision makers (i.e. lead cancer nurses)

across all four hospitals. Conversely, one of the most accepted ways to protect future

project leads is to ensure that all key decision makers are committed to the project and

adequately support the project lead with the implementation challenge during the project

life cycle.

Key decision makers for a complex and multi-centred project such as this MCS project

must have clear understanding of the responsibility and duties of the project lead; which

for this project was the implementation of the RP. This will empower the project lead to

manage and handle the project across all participated hospitals on a day to day basis

and ensure the project lead is aware of the limits of her/his responsibilities and

understand that issues outside those limits must be escalated to the key decision makers

which fully support her/his. Lack of this active and strong commitment from the key


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decision makers at any participated hospital will delay the project and will change the

direction of the project and approved key milestone on that hospital.

Prior any large project such as this project, key decision makers must also agree how

they will assure themselves that the integrity of those aspect of the project for which they

agreed to be accountable is being maintained during the project’s life cycle.

11.4 Project’s Admin Support This MCS project was a large and multifaceted project; therefore, a project administrator

who could have provided general administrative support was essential. A project

assistant could have also helped the coordination and supporting the project lead with

the RP’s implementation.


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12. Appendices 12.1 Appendix A: Tabular reports of the progress of the implementation of TS and

HNA for four tumour groups at each participated hospital.

Royal Surrey County Hospital NHS Foundation Trust (RSCH)

Treatment Summary Implementation Tumour Group & Treatment

Patient Group Format and Tools Status

Breast Only for surgical patients

CNSs have modified their treatment Diaries to comply with Macmillan/DOH template.

On track Started

Prostate for brachytherapy and prostatectomy patients

CNSs have designed their own templates for the both patients groups. Started 1/52 week ago 4x patient cases it is completed at time of discharge, note to GP and letter attached to it. Prostatectomy not introduced yet preliminary checks with Prof Eden. Too early for feedback just yet.

On track Started

Chemotherapy For all patients who have finished their course of treatment

CNSs have designed their own Template. The template is readily available on the Medonc. The implementation has been started as a pilot on May 9th across all tumour site using the paper version of the template

On track Started

Radiotherapy For all patients who have undergone radiotherapy

Radiotherapists have designed their own template which for each tumour group has its own requirement. The template is readily available on the Radonc.

On track Started

Lung Only For Surgical Patients

Somerset at the follow up clinic after their surgery On track Started

Colorectal Only For Surgical Patients

CNSs have designed their own Template which will be given to the patients at the follow- up clinic and a copy is sent to the GPS

On track Started

Holistic Need Assessment Implementation Tumour Group

& Treatment Format and Tools Implementation Procedure Status

Breast Wellbeing Assessment (WBA – modified distress thermometer). Locally designed check list, breast specific also covering full range of Socio-economical and educational needs.

Holistic Assessment is carried out at diagnosis and at one year post surgery. At one year patients are seen at a dedicated HNA clinic, which runs once a week. Patients are sent an appointment (1hr) with the WBA form and WBA patient leaflet. Patients are seen by their Key Worker.

On track However, currently due to the shortage of the staff, the implementation of the HNA has been on hold until Oct 2016 when the new staff will be available

Prostate Modified Expanded Prostate Cancer Index Composite for Clinical Practice (EPIC-CP)/Macmillan concerns for prostate patients

Holistic Needs Assessment is carried out on all patients post EBRT and again at 6 months follow up.

On track Started

Chemotherapy For all new patients attending the Chemotherapy Nurse-led clinic using the Macmillan Assessment and Care Plan

It has been started on May 9th. The HNA is being conducted at the beginning of, midway and end of treatment course.

On track Started

Lung Somerset HNA is done before start of treatment, however the CNSs plan to implement it midway through treatment or obvious deterioration and at the end of treatment or progression of disease.

On track Started

Colorectal Holistic Needs Distress Thermometer

Patient is sent a Holistic Needs Assessment form to complete and bring to their 6 month outpatient clinic appointment. This is then discussed in clinic and a care plan is constructed.

On track Started


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Surrey and Sussex Hospital NHS Trust (SASH)

Treatment Summary Implementation Tumour Group

& Treatment Patient Group Format and Tools Status

Breast Only for Patients who have had their surgery and finished their course of radiotherapy treatment.

CNS’s have designed their own template with the input from the breast surgical team.

On track Started

Prostate Only for Patients commenced on hormones for advanced disease

CNSs have designed their own template. All patients after their hormone therapy

On track Started

Chemotherapy For all patients who have finished their course of treatment

CNSs have designed their own template On track Started

Lung Only For Surgical Patients CNSs have designed their own template. Following surgery it is being sent after first OPA with the surgeon

On track Started

Colorectal Only For Surgical Patients CNSs have designed their own Template On track Started

Holistic Need Assessment Implementation

Tumour Group &

Treatment

Format and

Tools

Implementation Procedure Status

Breast Macmillan HNA form

Patients are offered an appointment to see the CNS six weeks after treatment. HNA is completed in the nurse-led clinic. HNA also offered to patients anytime during their pathway if anxieties / concerns are raised as an opportunity to complete a care plan.

On track started

Prostate Macmillan HNA form

Holistic needs assessments are carried out with all the prostate cancer patients who attend the nurse led uro-oncology clinics. These are typically patients who are on hormone therapy and or have had radiotherapy for prostate cancer.

On track Started

Chemotherapy for those patients who receive Chemotherapy at SASH

Holistic Assessment form/ Treatment Review (Sep 14)

Patients are given HNA at their first chemotherapy appointment as a start point and then discussed/reassessed at each cycle if necessary to implement/address any concerns/changes. Macmillan Record + Lilly Chemotherapy Record

On track Started

Lung Macmillan HNA form

After diagnosis within 6 weeks and at relapse of disease. HNA form given at first OPA with oncologist completed with patient over phone following this OPA. Team not doing HNAs on patients that are referred to palliative care.

On Track Started

Colorectal Macmillan HNA form

HNA form will be given to patients at first clinic appointment post-surgery and ask them to post it. Any concern and care plan will be addressed by telephone consultation

On track Started


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Ashford and St. Peter’s Hospital NHS Foundation Trust (ASPH)

Treatment Summary Implementation Tumour Group & Treatment


Breast For all patients with all other treatment modalities Somerset at the follow- up clinic On track Started

Prostate All patients following radiotherapy and hormonal therapy Also for those who are undergone for nephrectomy

Somerset Somerset for Nephrectomy patients

On track Started

Chemotherapy for Haematology cancer patients

For all patients who have finished their course of treatment

Somerset On track Started

Lung For all the surgical patients CNSs have designed their own template. The completed template will be sent to the GP following four weeks follow up consultation

On track

Colorectal For surgical patients with no chemo, the TS is provided at the nurse-led clinic and for the patients with chemotherapy the TS is provided at the completion of their chemotherapy treatment

Somerset On track Started

Holistic Need Assessment Implementation Tumour Group & Treatment

Format and Tools


Breast Somerset Currently HNA is generally carried out on diagnosis or soon after, and the reason is that the patients express their concern at this stage freely. However we are looking to the possibility to improve this assessment. Whether it will be telephone follow up or inviting them back in a nurse-led clinic will be decide in the near future. It is noteworthy to mention, that breast CNSs hold a well-being clinic which is for the patients (year on following diagnosis) and face to face HNA is carrying out.

On track Started

Prostate Somerset HNA is being conducted at the point of diagnosis and when the treatment summary is being produced to the patients. It is repeated whenever it is needed by the patients or the nurse feels the patients needed.

On track Started

Chemotherapy for Haematology Cancer patients

Somerset The Haematology Nurse specialist has set up an End of Treatment Clinic for patients to attend once they have completed Chemotherapy treatment, patients can choose whether they would like a face to face clinic appointment or have a telephone consultation. This End of Treatment summary clinic began on the 16/7/15 and gives patients the opportunity to voice any ongoing concerns with their health and wellbeing, a Holistic Assessment will be undertaken and GP summary will be sent out from that clinic. This clinic enables the Haematology Nurse specialist to summarise and identify any ongoing issues where patients can be immediately referred to the appropriate health care professional or agency or for the GP to action or follow up if necessary.

On track Started

Chemotherapy for patients who have been treated at Ashford

Macmillan HNA form

Nursing staff have commenced pre-chemotherapy HNA for patients receiving treatment for lung and breast chemotherapy

On track Started

Lung Somerset The majority of the Patients with the new diagnosis are seen in the clinic where the HNA is undertaken and recorded in Somerset. Some patients may have HNA over the phone, if this is more appropriate for the patients. This procedures is repeated in the Lung Cancer Surveillance Clinic ( Nurse-led)

On track Started

Colorectal Somerset Currently HNA is carried out at the time of the diagnosis and the data is recorded on the Somerset. However future planning to develop better and frequent assessment is ongoing

On track Started


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Frimley Park Hospital (FPH) now part of Frimley Health Foundation NHS Trust (FHFT)

RAG coding: Red Action is needed Amber Pending, however in progress with a set date to start Green On track, already started

Treatment Summary Implementation

Tumour Group & Treatment


Breast Only For Surgical Patients CNSs have designed their own template

On track Started

Prostate Action is needed

Chemotherapy for patients who are treated at FPH

For all patients who have finished their course of treatment

CNSs will be using RSCH template which has been downloaded on the “ Patient Centre”

On track

Lung Only For Surgical Patients CNSs have designed their own template

On track Started

Colorectal Action is needed

Holistic Need Assessment Implementation

Tumour Group & Treatment

Format and Tools


Breast Somerset Used pre and post ‘Moving on ‘programme which is offered to all patients. High scores are contacted on the telephone and offered 1-1 meeting with CNSs. Individual ones being offered to patients during 1-1 clinics esp. metastatic patients with continued follow-up

On track Started

Prostate Macmillan HNA form

HNAs will be given out at initial meeting with newly diagnosed patients for them to take home and bring back to subsequent appointment and /or to contact CNS if any concerns are highlighted. Based on individual patient’s needs and on review appointment further HNA will be carried out during and post treatment for prostate cancer patients.

On track Started

Chemotherapy for patients who are treated at FPH

Frimley Health’s own template

Completed with patient during pre-chemo assessment and as required during treatment

On track Started

Lung Macmillan HNA form

HNAs will be given out at initial meeting with new patients for them to take home and complete bring back to OPA with oncologist or follow-up with a phone call

On track Started

Colorectal

Action is needed


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12.2 Appendix B: Treatment Summary templates which have been designed by the

CNSs and Radiotherapist across four hospitals


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12.3 Appendix C: The health and wellbeing Events’ Flyers


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Healthcare

Katayoon Bamdad