Case for change

Buckingham

Aylesbury

High Wycombe Denham and Gerrards Cross

Chesham

Buckinghamshire

4

5

7

8

24

25

26

Cancer in Buckinghamshire

Case for change

About the project

Research findings

What does this mean for the people of Buckinghamshire?

What next?

Appendices

Contents

There are currently 16,600 people in Buckinghamshire living with cancer. This is expected to rise to 31,500 by 2030, with one in two people affected by cancer in their lifetime.1 The population of people living with and beyond cancer is growing and ageing, and has multiple needs. Cancer survival is at its highest rate ever, with significant improvements made in the last 15 years, and people are now twice as likely to survive at least ten years after being diagnosed with cancer as they were at the start of the 1970s.2

Many people with cancer experience short-term physical side effects while undergoing treatment. However, some experience long-term or late-onset ‘consequences of treatment’. It is estimated that one in four people living with and beyond cancer experience one or more physical or psychosocial consequence of their cancer or its treatment: chronic fatigue; sexual difficulties; mental health problems; pain; urinary and gastrointestinal problems; and lymphoedema; with 70% living with at least one other long-term condition.3

A large proportion of current NHS cancer costs relate to treating people who are in the survivorship phase following initial treatment. Personalised care beyond cancer treatment has the potential to reduce costs by reducing recurrences, better managing side effects and supporting people to live well.4 It is estimated that GP surgeries have an average of eight or nine new cancer diagnoses per year and are looking after 20 to 30 patients with cancer.5 The equivalent of up to 15 patients on a GP list the size of 1500 is experiencing a significant health condition as a result of their cancer treatment.6

This report summarises the feedback from local NHS services, local and national charities, cancer support groups and over 300 residents who have shared their stories: what it’s like to live with cancer, and their feelings at the end of initial treatment. The quotes we have shared in this report illustrate the real-life needs of our residents.

Cancer in Buckinghamshire

4Living With Cancer and Beyond Treatment Case for change

The NHS Five Year Forward View signaled a continued focus on better treatment, care and aftercare for everyone diagnosed with cancer.7 Achieving world class cancer outcomes A strategy for England 2015–2020 emphasises the importance of taking a whole person approach to the commissioning and provision of cancer services and highlights the need to improve quality of life for people living with and beyond cancer.1 The development of cancer services in Buckinghamshire has been the focus of Buckinghamshire CCG’s cancer programme so far, which has resulted in the creation of the CCG’s strategy. It has concentrated on diagnosis, treatment and care provided by hospital trusts and supporting agencies. Substantial evidence supports the positive impact of the ‘recovery model’, which aims to help people with a diagnosis of cancer prepare for the future and to identify their support needs.

Through local discussion and national recognition, it is widely believed that patients ‘living with and beyond’ cancer (LWBC) could be better supported to improve their lifestyles and/or manage onward health after finishing treatment.

Health services and councils within Buckinghamshire are currently making a transition towards an Integrated Care System (ICS) – everyone working together so that people of Buckinghamshire have happy and healthier lives. Organisations already have a good history of joint working and are working closely together to put residents and patients at the centre of what we do.

The LWBC Programme for Buckinghamshire aims to transform the way we support people during and after treatment. It seeks to ensure integrated pathways are seamless across all care sectors, particularly addressing the current unmet holistic needs reported post-treatment. A collaborative approach is vital to this, in partnership with Macmillan Cancer Support, our residents, local and national charities, NHS services and voluntary organisations.

The programme will also support integration, innovation, and the roll-out of the Recovery Package and Stratified Follow Up Pathways by 2020, and it will complement the Buckinghamshire Cancer Strategy.

Case for change

54 Living With Cancer and Beyond Treatment Case for change

Chesham town centre


In recent months we have collated people’s views and listened to their experiences of living with a cancer diagnosis and life after treatment. The analysis of oral and written feedback has highlighted several challenges which are set out in this document. It summarises why change is needed to enable those living with cancer in Buckinghamshire to live happy and healthier lives. Gathering this evidence has formed phase one of the project. In 2019, phase two will focus on how to make those changes and improvements to cancer services identified by people in Buckinghamshire.

During phase one, we’ve engaged with over 300 people:

117 members of local cancer support groups gave their views.

We attended GP locality events.

177 residents of Buckinghamshire filled out our public survey.

We involved local and national cancer charities and local hospice services who offered their expertise.

We put comments boxes, comments cards and posters in 64 community venues across Buckinghamshire.

We ran a media campaign across social media and countywide press, as well as in local community publications.

The feedback received was geographically spread across Buckinghamshire.

What follows is a summary of key themes highlighted by people during the project.

Fiona Tearle, Macmillan Living Well With & Beyond Cancer Project Manager, Buckinghamshire CCG

About the projectLiving with Cancer and Beyond Treatment in Buckinghamshire


What have we heard? We have talked to patients, carers and their families, the public and stakeholders from all around the county, and we have listened to their comments. Our findings have correlated with national research on the needs of cancer patients, their carers and families.

What supports you to get the most out of life since your cancer diagnosis?

A positive attitude

Support of friends and family

Support from health, social care and charities

Living healthily

Support networks and groups

Living life to the fullest/returning to a new ‘normal’

Researching and understanding their condition

Information and advice services

What prevents you from getting the most of out of life since a cancer diagnosis?

Lack of psychological /mental health support

Side effects of treatment, operation or medication

Inconsistent healthcare and lack of joined-up care

Fatigue and lack of energy

Managing pain

Reduction in mobility and poor quality of life

Unsupportive employer and loss of identity after giving up work

Lack of local information and support when treated outside of Buckinghamshire

Research findings


Top concerns about receiving a cancer diagnosis

What if cancer comes back?

Mental health and emotional support

Reduced quality of life or ability to ‘live well’

Coming to terms with death and leaving my family behind

Side effects of treatment/operations/ medication and health worries

Getting support to manage my pain

Reduced employment opportunities and financial worries

Ensuring quality support at the end of life and being in pain at the end

Getting follow-ups and aftercare

Getting support to help manage fatigue

Being able to keep active and leading a healthy lifestyle


1. Mental health support Significant events such as receiving a cancer diagnosis or treatment for cancer will affect most people’s emotional state. Psychological distress is common among people affected by cancer and is an understandable and natural response to a traumatic and threatening situation. Patients at every stage of the cancer pathway can find themselves dealing with difficult and distressing issues. They can develop problems ranging from sadness or worry to psychological symptoms sufficiently intense to interfere with their ability to function on a daily basis.

Survey respondents related to the following emotional impacts of cancer:

“I feel nervous.”

“I feel isolated and lonely.”

“I worry about dying.”

“I feel close to my friends.”

“I feel sad.”“I am losing hope in the fight against my illness.”

“I like the appearance of my body.”


“I get emotional support from my family.”

“My family has accepted my illness.”

“I have accepted my illness.”

“I’m satisfied with family communications.”

“I am content with the quality of my life right now.”

“I am enjoying the things I usually do for fun.”

“I worry that my condition will get worse.”

“I can enjoy life.”

“I feel close to my partner or my main supporter.”

“I get support from my friends.”

“I am satisfied with how I am coping with my illness.”

“Psychological distress is my main concern.”


Around the time of a diagnosis of cancer, approximately half of all patients experience levels of anxiety and depression severe enough to affect their quality of life adversely. About one quarter continue to be as affected during the following six months. Among those who experience a recurrence of cancer, the prevalence of anxiety and depression rises to 50% and remains at this level throughout the advanced illness. In the year following diagnosis, around one in 10 patients will experience symptoms severe enough to warrant intervention by specialist psychological/psychiatric services.8 Such symptoms can also be seen in 10–15% of patients with advanced disease.9 Ten years after treatment 54% of people affected by cancer still suffer from at least one psychological issue.10

Significant levels of distress such as severe depression combined with hopelessness are predictors of suicidal ideation and suicidality in cancer patients. People with cancer are at increased risk of suicide compared to the general population.11,12

In national strategic documents, there is increasing recognition that psychological care services for those affected by cancer lag behind the services for physical health problems. The 2011 Department of Health (DH) report, ‘No Health Without Mental Health’, makes a case for parity of esteem between mental health and physical health services.13

Psychological distress in those living with cancer is associated with a range of harmful outcomes: amplification of physical symptoms; reduced functioning; an enhanced desire for death; and reduced adherence to cancer treatment. It also has an adverse impact on carers and leads to increased use of healthcare resources.14

In summary, the importance of providing psychological support to cancer and haematology patients has been well recognised over the past decade in many strategic documents, health plans, peer reviews and guidelines.

I worry about managing the concerns of my family.

Survey respondent


Dave, diagnosed with prostate cancer in 2015, with his wife and carer, Prue.


2. Managing pain One in three (33%) people who have completed treatment intended to cure their cancer report some degree of pain. Five years following treatment, one in five of those diagnosed with breast, colorectal or prostate cancer or non-Hodgkin’s lymphoma report moderate to extreme pain or discomfort.15

Our research highlighted that pain and accessing pain management support was preventing residents from getting the most out of life with 27% of survey respondents experiencing pain. Survey respondents were concerned about being in pain at the end and accessing high-quality support at the end of life.

3. Managing fatigue Fatigue related to cancer and its treatment can make even simple tasks feel exhausting. As many as three in four (75%) of people living with cancer feel fatigued at some point.16 In a national survey of people living with breast, colorectal or prostate cancer or non-Hodgkin’s lymphoma, more than four in 10 (43%) of those diagnosed who were up to five years after treatment reported always feeling tired.17 Fatigue is particularly prevalent in the year following cancer treatment.

In Buckinghamshire, 25% of survey respondents had a lack of energy. They were also concerned about being able to access support to manage fatigue, which is preventing them from getting the most out of life.


4. Person-centred, personalised, empowering and coordinated care

National research has found that nearly one in five people with cancer experience poorly coordinated care, in which two-thirds of cases result in people feeling more stressed and anxious.

In Buckinghamshire, 56% of survey respondents thought they had definitely, or to some extent, received enough support from health, social care and charities which enabled them to get the most out of life.

It would be good to have an index, telling you what’s in the information packs. That way you can look up information that is useful to you at the time you need it.

Ros, Aylesbury

If only I had information about support groups at the beginning of my cancer journey, instead of floundering in the dark for so long.

Jan, Aylesbury

Denton, diagnosed with prostate cancer in 1997, still suffers from fatigue.


Survey respondents recognised the following impacts of cancer:

“I am sleeping well.”

“I urinate more frequently than usual.”

“I have pain.”

“I have a good appetite.”

“I am bothered by the side effects of the treatment.”

“I have control of my bowels.”

“I am forced to spend time in bed.”

“I have trouble meeting the needs of my family.”

“I am losing weight.”

“I have nausea.”

“I have diarrhoea.”

“I feel ill.”

“I have a lack of energy.”

had been asked about their holistic needs.

“I have trouble controlling my urine.”

“I am satisfied with my sex life.”


National research states that 70% of people living with cancer have at least one other long-term condition.18

Survey respondents were concerned about adequate follow-ups and aftercare and felt that inconsistent healthcare and lack of joined-up working was preventing them from getting the most out of life.

The increasingly complex patient needs mean that the NHS needs to get better at signposting to a range of services and sharing information securely between services.

I felt like pass the parcel and was passed between seven different consultants, and didn’t get the information and support I needed.

Georgina, South Bucks

I don’t know who to call. Survey respondent


Survey respondents highlighted the need for further information and signposting on a number of topics:

Did you receive any advice or local information on the following issues?

39

32

18

50

13

30

30

34

25

31

23

Would it have been helpful to have had more advice or information on any of the following issues?

27

31

24

8

12

25

41

57

29

47

–

Diet and lifestyle (including stopping smoking)

Physical activity and exercise

Financial help or benefits

Free prescriptions

Returning to or staying in work

The physical aspects of living with and after cancer

The psychological or emotional aspects of living with and after cancer

How to access support groups and support from local charities

What to expect after treatment has finished

I have all the information and advice I need

I was not offered any of the above


84% of survey respondents felt they had enough information and education to manage their care and stay independent.

Our research identified that we could do better in ensuring that all patients, no matter where they were treated, have access to local information and can be signposted to local services and support groups.

34% of respondents felt their GP practice was informed about their cancer, its treatment and could help with day-to-day enquires.

Our feedback has highlighted that we need to make improvements, so people know who to call with concerns about any aspect of living with cancer.

Developments within stratified follow-up pathways include a needs assessment, support for patients to self-manage, remote monitoring and re-entry pathways, all of which will offer a more effective approach to aftercare than traditional medical models of follow-up.29

The King’s Fund document Bringing together physical health and mental health 20 emphasises that the needs of an individual ‘are met in a coordinated way with medical, social and psychological needs being addressed together.’

NHS England plans to introduce a quality of life metric in the future to ensure that psychological and emotional well-being is prioritised across care pathways. Given the impact of the physical consequences of cancer and its treatment, and of mental health and social factors on quality of life, prioritising cancer rehabilitation and psychosocial support must be regarded as central to maintaining quality of life with parity to physical health.21

The implementation of the recovery package in Buckinghamshire by 20201 will lead to improved person-centred, personalised, and coordinated care.

I have found that being part of an active support group has helped in the self-acceptance, reduction of fear of the condition and the ongoing treatment and monitoring.

Barry, Wooburn

My pathway has been very smooth, and I have received advice all along the way. My only issue is that sometimes following hospital consultations feedback is not always sent to GPs.

Richard, Aylesbury


5. Healthy lifestyles Research suggests that being physically active, along with eating a healthy diet post-treatment, can lead to reduced levels of fatigue and give patients an overall higher quality of life, across a range of cancer types. There is some emerging evidence that being physically active at the levels recommended can reduce the risk of certain cancers coming back or progressing.22

Survey respondents were concerned about being able to lead a healthy lifestyle and the ability to live well. In some cases, reduced mobility, poor quality of life, and the side effects of treatment were preventing residents from getting the most out of life. 70% of survey respondents reported undertaking less than 30 minutes of physical activity over three days in the week before completing the survey.

When you are living with or after cancer, becoming more active can be a positive change to make in your life. Evidence shows that physical activity can benefit people affected by cancer in several different ways.

Positive mental attitude has been essential in my recovery.

Survey respondent


6. Managing the financial impact of a cancer diagnosis Nationally research identified that four out of five (83%) cancer patients are hit by the financial cost of cancer, which averages around £570 a month for those affected, with 85% of patients experiencing extra spending totalling on average around £270 a month.23

Survey respondents were worried about reduced employment opportunities and financial concerns with 39% feeling that they did not have enough information and access to independent financial advice to manage the cost of cancer.

Key factors that influence the financial impact of cancer include people’s age, where they are in their cancer journey, their employment status and income.23

The online survey highlights the effects of cancer on employment and career prospects for the respondents:

The impact of cancer and its treatment affects much more than just health and well-being. An online Macmillan survey found that the physical and emotional effects of cancer and its treatment are the two most common reasons why employees diagnosed with cancer give up work or change jobs. Almost half (48%) of those who do so say it’s because they were not physically able to return to the same role, while one in three (33%) say they did not feel emotionally strong enough.24

Before cancer

27

4

48

10

16

3

Survey respondents

Not working at all

Working fewer hours than usual

Working your usual hours

Working more hours than usual

This question does not apply to me

Unable to work for health reasons

After cancer treatment

38

15

26

4

23

3

Remaining at work while I was receiving treatment was essential to keep some normality and routine during the worst of times. I was very lucky and able to juggle my workload to work throughout chemotherapy. I strongly believe that work kept me sane and fit(ish) meaning I could “recover” quicker. I know it’s not right or possible for everyone and I do believe it should be possible for everyone to be able to choose the correct path for them.

Jo, Aylesbury


7. Reliant on others Caring responsibilities can have an adverse impact on the physical and mental health, education and employment of those who care. This can result in significantly poorer health and quality of life outcomes. These, in turn, can affect a carer’s effectiveness and lead to the admission of the cared for person to a hospital or residential care. 25

Support of friends and family has enabled survey respondents to get the most out of life since their cancer diagnosis. However, 46% felt that their family or those who care for them were supported well.

The numbers of people providing care are significant and are likely to continue to grow over the coming years. We know that when carers are well-supported, they provide better care to the person they care for and report better well-being outcomes themselves.26

Understandably everyone focuses on the needs of the person with cancer, but carers need support too. The opportunity to meet with people who understand and share their experiences is so helpful.

Pat, Aylesbury

Priti, diagnosed with ovarian cancer in 2014.


Greater access to mental health, pain and fatigue services.

Access to support, guidance and training for hospital and GP surgery staff.

Better recognition of the psychological and emotional impact of cancer.

Better follow-ups and aftercare to help self-management and knowing who to call when worried.

Communication across services and organisations needs to be improved, to enable patients to access support closer to home no matter where they are treated.

Adequate care and support planning throughout the cancer journey and access to records, test results and tools to help self-management.

Support and training for employers.

Services closer to home.

Personalised care and support.

Support to help maintain fitness and diet management.

Top ten things that could be improved

What improvements would you like to see? Through analysis of oral and written feedback from local NHS services, local and national charities, cancer support groups and over 300 residents, several key areas of improvement have emerged which are highlighted below in order of priority:


We have listened to what everyone said about areas for improvement and gaps in support for those living with cancer or beyond treatment and their families, and this document sets out the key issues people raised during the project to date. A vital element of this work will include defining more clearly – with your input – how future services might be organised to best deliver quality care for years to come.

Kim Bowles, Strategic Partnership Manager at Macmillan Cancer Support, said: ‘It’s thanks to our supporters that Macmillan was able to fund such in-depth engagement with people affected by cancer, their carers and their loved ones. And it’s very promising to see the results of that engagement work being the driving force behind improvements in cancer services in Buckinghamshire. The next step is to use this brilliant insight to adapt or improve existing services, and create new ones where they’re needed. Macmillan is looking forward to carrying on working with the NHS in Buckinghamshire to address those needs.’

Dr Raj Thakkar, Clinical Commissioning Director for Planned Care at Buckinghamshire CCG, said: ‘Our focus and determination to understand the needs and experiences of patients and their carers, and to create system-wide change around them, has been at the centre of this project. Our healthcare system is committed to building on the engagement work we have done to support patients living with and beyond cancer.’

What does this mean for the people of Buckinghamshire?


What next? Thank you to everyone who has contributed to the project so far – the feedback we’ve collected has been valuable. This document outlines what you’ve told us and why we need to change how services are delivered. The resulting strategy for Living with Cancer and Beyond will provide a framework which will be the basis of subsequent action plans.

We want you to remain involved, and over the coming months will continue to hold further events to get your views and look at options for the future. If you would like to be involved, please email [email protected]

To receive a copy of this report in another format or language or if you have questions about the review, please contact us at [email protected]


Under 18 118–24 025–34 235–44 1245–54 2555–64 2865–74 3175–84 1085+ 0

* 177 Buckinghamshire residents completed the online survey before 31 March 2018, however it was not compulsory to answer every question. † See pages 28–30 for analysis of online survey responses per question.

Survey respondents were geographically spread across Buckinghamshire, from our towns and our rural areas.

Other long-term conditions in survey respondents:

Age range†

Long term back problems 6%

Long standing mental health problem 6%

Long standing neurological problem 4%

Another long standing condition 14%

I (or the person I am answering about) do not have any of these conditions 43%

Angina 3%

Arthritis 13%

Asthma or other chronic chest 4%

Deafness or hearing impairment 8%

Diabetes 10%

Heart condition 8%

High blood pressure 20%

Kidney disease 4%were male† were female†

Online survey demographics*


Wycombe

Amersham

Stoke Mandeville

Chiltern Hospital

Breast 39Colorectal 20Gynaecological 6Haematological 7Head & neck 10Prostate 13Urological 14

Which is the primary site of the cancer affecting you or the person you are talking about?†

respondents completed cancer treatment between 18 months and 5 years ago.†

How are you affected by cancer?†

Diagnosed with cancer 26%

Undergoing treatment 11%

Finished initial treatment 21%

A carer of someone affected by cancer 10%

Under clinical follow up 22%

After treatment, coping well 54%

After treatment, coping poorly 10%

A relative or friend of someone affected by cancer 23%

Primary hospital location†


The themes and trends identified in the previous pages have been formed from analysis of oral feedback from 11 focus groups with local cancer support groups (111 people), comments cards left within community venues and responses from 177 members of the public who filled out the online survey. Below are the response rates per online survey question.

What do you feel has allowed you to get the most out of life since you, or the person you are talking about, received a cancer diagnosis?

Gathered from analysis of oral and written feedback from 209 residents (97 survey respondents).

What do you feel has prevented you from getting the most out of life since you, or the person you are talking about, received a cancer diagnosis?


What are your top three concerns since you or the person you are talking about received a cancer diagnosis?


Top 10 improvements Gathered from analysis of oral and written feedback from 204 residents (98 survey respondents).

Emotional impacts of cancer Respondents were able to provide multiple answers to this question, we received over 177 individual responses.

Support from health, social care and charities 68 survey respondents out of 177 did not complete this question however this featured highly in our analysis of oral and other written feedback.

Analysis of online survey responses per question


Physical impacts of cancer Respondents were able to provide multiple answers to this question, we received over 177 individual responses.

Have you or the person you are talking about ever been asked about holistic/personal needs?

68 survey respondents did not complete this question however this featured highly in our analysis of oral and other written feedback.

Do you think that GPs and nurses at your general practice are informed about your cancer and treatment and can help with day-to-day enquiries about cancer care?

68 survey respondents out of 177 did not complete this question however this featured highly in our analysis of oral and other written feedback.

Do you know who to contact if you (or the person you are answering about) have a concern about any aspect of living with cancer?


Do you (or does the person you are answering about) have all the necessary information and access to independent financial advice to manage the cost of cancer?


Do you (or does the person you are answering about) have all the necessary information and education to manage your own care and stay independent?


Is your family or those who care for you supported (or is that of the person you are answering about)?


Employment status 68 survey respondents out of 177 did not complete this question.

In the past week, on how many days have you done a total of 30 minutes or more of physical activity, which was enough to raise your heart rate?

68 survey respondents out of 177 did not complete this question.


Did you receive any advice or local information on the following issues?

And

Would it have been helpful to have had more advice or information on any of the following issues?

Respondents were able to provide multiple answers to this question, we received over 177 individual responses this also featured highly in our analysis of oral and other written feedback.

Gender 68 survey respondents out of 177 did not complete this question.

Age range 68 survey respondents out of 177 did not complete this question.

How are you impacted by cancer? All 177 survey respondents completed this question.

Which is the primary site of the cancer affecting you or the person you are talking about?

68 survey respondents out of 177 did not complete this question.

Other long-term conditions All survey respondents completed this question, some of which had more than one long term condition.

Primary hospital location 59 survey respondents out of 177 did not complete this question.


1 Independent Cancer Taskforce (2015) Achieving World-Class Outcomes A Strategy for England 2015–2020 https://www.cancerresearchuk.org/sites/default/files/achieving_world-class_cancer_outcomes_-_a_strategy_for_england_2015-2020.pdf

2 https://www.macmillan.org.uk/documents/campaigns/cancer-then-now-report-final-online.pdf

3 Independent Cancer Taskforce (2015) Achieving World-Class Outcomes A Strategy for England 2015–2020 https://www.healthylondon.org/wp-content/uploads/2017/11/CCR-business-case-Nov-2017.pdf

4 Macmillan.org.uk. (2018). [online] Available at: https://www.macmillan.org.uk/_images/beyond-life-and-death_tcm9-298127.pdf [Accessed 20 Sep. 2018].

5 http://www.nice.org.uk

6 http://www.rcgp.org.uk/clinical-and-research/resources/toolkits/consequences-of-cancer-toolkit.aspx

7 NHS England (2014) Five Year Forward View https://www.england.nhs.uk/five-year-forward-view/

8 National Institute for Health and Care Excellence (2004) Guidance on Improving Supportive and Palliative Care for Adults with Cancer https://www.nice.org.uk/guidance/csg4/resources/improving-supportive-and-palliative-care-for-adults-with-cancer-pdf-773375005

9 Transforming Cancer Services Team (TCST) for London (2018) ‘The psychological impact of cancer: commissioning recommendations, pathway and service specifications on psychosocial support for adults affected by cancer’

10 Impact Briefs: Psychological and Emotional Support (Macmillan Cancer Support, 2015) https://www.macmillan.org.uk/_images/Psychological-and-Emotional-Support_tcm9-283186.pdf

11 Calati, R., Di Mattei, V. and Courtet, P.,(2017) Risk of suicide mortality among cancer patients: A meta-analysis of observational studies. European Psychiatry, 41, pp.S290-S291 http://www.europsy.net/wp-content/uploads/2017/03/cancersuicide.pdf

12 https://www.gov.uk/government/news/cancer-patients-at-increased-risk-of-suicide

13 GOV.UK. (2018). The mental health strategy for England. [online] Available at: https://www.gov.uk/government/publications/the-mental-health-strategy-for-england [Accessed 25 Sep. 2018].

14 London Cancer Alliance (2015) Developing a pathway for mental health and psychological support services for adults.

15 Based on data reviewed as part of Macmillan Cancer Support (2013) Throwing light on the consequences of cancer and its treatment: van den Beuken-van Everdingen MHJ, de Rijke JM, Kessels AG, Schouten HC, van Kleef M & Patijn J. 2007. Prevalence of pain in patients with cancer: a systematic review of the past 40 years. Ann Oncol 18, 1437–1449.

16 http://www.macmillan.org.uk/Cancerinformation/ Livingwithandaftercancer/Symptomssideeffects/Fatigue/Aboutfatigue/Fatiguecancer.aspx [Accessed May 2013]

17 Based on data reviewed as part of Macmillan Cancer Support (2013) Throwing light on the consequences of cancer and its treatment: Department of Health. 2012. Quality of Life of Cancer Survivors in England. Report on a pilot survey using Patient Reported Outcome Measures (PROMS).

18 http://be.macmillan.org.uk/Downloads/CancerInformation/LivingWithAndAfterCancer/MAC11664CopingwithfatigueE6reprintlowrespdf20150723.pdf

19 Cancerresearchuk.org. (2018). [online] Available at: https://www.cancerresearchuk.org/sites/default/files/achieving_world-class_cancer_outcomes_-_a_strategy_for_england_2015-2020.pdf [Accessed 20 Sep. 2018].

20 The King’s Fund. (2018). Bringing together physical and mental health. [online] Available at: https://www.kingsfund.org.uk/publications/physical-and-mental-health [Accessed 25 Sep. 2018].

21 England, N. (2018). NHS England » New quality of life measure for recovering cancer patients. [online] England.nhs.uk. Available at: https://www.england.nhs.uk/2017/09/new-quality-of-life-measure-for-recovering-cancer-patients/ [Accessed 25 Sep. 2018].

22 Macmillan.org.uk. (2018). Benefits of being active – Information and support – Macmillan Cancer Support. [online] Available at: https://www.macmillan.org.uk/information-and-support/coping/maintaining-a-healthy-lifestyle/keeping-active/benefits-of-being-active.html#8435 [Accessed 19 Sep. 2018].

23 Macmillan.org.uk. (2018). [online] Available at: https://www.macmillan.org.uk/documents/getinvolved/campaigns/costofcancer/cancers-hidden-price-tag-report-england.pdf [Accessed 19 Sep. 2018].

24 Macmillan Cancer Support/YouGov online survey of 2,142 UK adults living with cancer. Fieldwork took place 26 November – 14 December 2012. Survey results are not weighted.

References


25 Assets.publishing.service.gov.uk. (2018). [online] Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/136450/IA-Annex-C-assessment-and-eligibility.pdf [Accessed 19 Sep. 2018].

26 https://www.carersweek.org/images/Resources/CW18_Research_Report.pdf


Being told ‘you have cancer’ can affect so much more than your health – it can also affect your family, your job, even your ability to pay the bills. But you’re still you. We get that. And, after over 100 years of helping people through cancer, we get what’s most important: that you’re treated as a person, not just a patient.

It’s why we’ll take the time to understand you and all that matters to you, so we can provide the support you need to take care of your health, protect your personal relationships and deal with money and work worries.

We’re here to help you find your best way through from the moment of diagnosis, so you’re able to live life as fully as you can.

Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. April 2019.

For information, support or just someone to talk to, call 0808 808 00 00 or visit macmillan.org.uk

35Case for change

Case for change - Buckinghamshire CCG

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