Darlington Has Cancer Written by Louise Harland 1 Contents - - PDF document
Darlington Has Cancer Written by Louise Harland 1 Contents Introduction Cancer and the facts Living with and beyond cancer The service Referral pathway Financial background Prelude to the Darlington has cancer event Darlington Has Cancer
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Written by Louise Harland
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Introduction Cancer and the facts Living with and beyond cancer The service Referral pathway Financial background Prelude to the Darlington has cancer event Darlington Has Cancer – The event The stories The future Greater voice for cancer patients Feedback Comments Survey results Testimonies Acknowledgements Testimony to Marsha Porter
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The Darlington Has Cancer report summarises an event in September where the work of the specialist cancer advice and information support service based within Darlington Citizens Advice Bureau was discussed. The event explored the impact the service had on a patient’s cancer journey; those attending included health practitioners and partner
For seven years, Darlington has had a designated cancer specialist caseworker providing a holistic advice and support service for welfare benefits and general advice issues, ensuring residents of Darlington have access to support and information throughout their cancer journey. In 2014, the service faced its biggest threat to date due to a lack of funding. It was given a last-minute injection of much-needed money from Macmillan for a further nine months. This was the final available funding and was awarded to enable service users and commissioners to work together and assess the needs of cancer patients in Darlington.
Today, more than 1.7 million people in England have been diagnosed with
cancer diagnoses will be made each year. People living with cancer have a variety of needs and we know they are not always fully met. Good patient experience is linked to improved patient
health and social care providers. (1) Having and living with cancer is expensive. On diagnosis, finances are not always the first consideration, but are certainly always the second. Seventy per cent of cancer patients suffer loss of income and/or increased costs as a direct result of their cancer diagnosis (2) and someone with cancer makes an average of 53 trips to the hospital, costing £325 during the course of their treatment. (3) Although there is growing recognition of cancer poverty, financial hardship is a widespread consequence of a cancer diagnosis. Research by Dr Suzanne Moffatt PhD, from Newcastle University, shows that having a dedicated welfare rights service makes a difference to the health and wellbeing of the cancer patient. The impact of having additional
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financial resources included offsetting the additional costs associated with a cancer diagnosis and increased the affordability of necessities. Service users reported less anxiety and stress related to financial matters and the research suggests that accessing benefit entitlement increased the ability to cope with many of the wider issues associated with a cancer
The cancer story is changing and more people are surviving cancer than ever before. This is a cause for celebration, but the impact of cancer does not suddenly stop when treatment is over. “People who have finished cancer treatment tell us they often have difficulties financially, emotionally, practically and medically. Macmillan believes far more can be done to improve the lives of cancer survivors. Support for people living with or beyond cancer should not finish after treatment, but should continue into a phase of supported aftercare”. (5) A cancer survivor is someone who is living with or beyond their cancer. This could be someone who has completed their treatment or is having on- going treatment. The number is increasing due to:
People who have finished treatment have told Macmillan they experience difficulty returning to normal life, with key issues including:
its treatment;
though they feel healthy;
2 YouGov Plc. online survey of 1,495 adults who have had a cancer diagnosis. Fieldwork conducted between August 1 and 16, 2011 3 Macmillan Cancer Support. The hidden cost of getting treatment 2006 4 Suzanne Moffatt. The impact of a dedicated welfare rights service for people affected by cancer. March 2011. 5http://www.macmillan.org.uk/GetInvolved/Campaigns/Weareaforceforchange/Survivorship/Livingwithorbeyond cancer.aspx
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Since 2007, Darlington Citizens Advice Bureau’s specialist Macmillan service has delivered bespoke health advice sessions for cancer patients and people with life limiting and/or long-term health. Sessions have been held at St Teresa’s Hospice, Darlington Memorial Hospital and GP surgeries, and home visits have also been arranged. A feature of the Darlington CAB Health Advice Service is the provision of a cancer trained specialist adviser, providing advice on both a face-to-face and one-to-one basis. This ensures cancer service users and people with long-term health conditions can access welfare benefits and money advice. The service can be accessed through a variety of sources. Since its inception in 2007, more than 4,000 Darlington service users and their families have accessed the service.
Specialist Macmillan Advice & Support Caseworker Macmillan Centre District Nurses GP Surgery Macmillan Nurses CAB Self Referral Hospital Staff
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The service was previously funded by Macmillan Cancer Support and Primary Care Trust (PCT) on a sliding formula where in year five services would be funded by the PCT, but the PCT was abolished after the five-year period. In year six, advice for cancer patients was funded by Public Health (under non-renewable funding) and it was hoped that at the close of year six either Public Health or the Darlington Clinical Commissioning Group (DCCG) would fund the service. But no commitment was forthcoming and the service was due to end on March 31, 2014. Macmillan Cancer Support intervened and agreed to provide reduced final funding until September 2015, with a view to more detailed consideration by Public Health and DCCG.
A small steering group, comprising cancer patients and people working within cancer services, along with Healthwatch Darlington, was set up to consider the effect of the loss of the cancer advice service and the impact on cancer patients in the Darlington area. The group, the Darlington Health Advice Steering Group, also began planning an event to raise awareness of the impact of this loss. Members wanted to improve the quality of life for people in Darlington following the diagnosis and treatment of cancer, so organised a half-day workshop on September 12, 2014, to talk to Darlington cancer sufferers about the issues they faced.
Interactive postcard invitations were sent to members of Darlington’s Health and Wellbeing Board, people living with and beyond cancer, their carers, hospital consultants, GPs, the head of nursing in Darlington, cancer nurse specialists, Public Health, the DCCG, financial institutions and other health and social care professionals, including voluntary sector
The event took the form of “group speed dating” and discussions with a cancer survivor, support worker and a facilitator focussed on the issues of benefits, survivorship, money management, employment and health and wellbeing and the impact on cancer service users and their lives.
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Each service user had a story to tell about their journey and experience of the service. The event began with an introduction followed by a video of a service user talking about their experience (http://youtu.be/l9TWTCej8DM) Attendees were given about 20 minutes to listen to their service user’s experiences on the key issues before answering questions and moving to
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the next user. The questions remained the same for each of the five key issues. The results from the discussions are documented below and many of the issues were not only related to the advice service, but considered a UK- wide approach to advice. The discussions also generated suggestions about how the issues raised should be addressed.
Ken Simpson, 78, lives in Darlington with his wife, Betty. “I have three daughters and several
live in our own home. Six years ago, I was diagnosed with lung cancer and given treatment. Last year, I was told following a routine check-up that the lung cancer had returned. I am now oxygen dependant and am aware my prognosis is life limiting.” Key Issues Key findings
BENEFITS Service importance Face to face and one to one support Pro-active service Availability of home visits Availability of specialist advice and support Question 1. If money was no object Holistic support package Consistent support as
funding allocations Easy to fill in forms or assistance to complete them Easily accessible service Network of support so advice is automatically
Training and educating
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professionals Easy to read benefits guide Uncomplicated benefit system Question 2. Money is now an object - top three priorities An automatic process for referral Face to face support Simpler process for claiming benefits More awareness of what’s available Home visits and one to one support Proactive service
Marsha has lived in Darlington all her life. Her children have families of their own and she has custody of two grandchildren, who live with her. “I was diagnosed with breast cancer in 2009 and have been on a rollercoaster ride since. Having access to the CAB/Macmillan Advice Service has helped me to cope when times have been financially and emotionally
me.” Key Issues Key findings
SURVIVORSHIP Talking to someone who has specialist experience
Inequity between support for different cancer groups Knowing someone cares Question 1. If money was no object Dedicated holistic service Whole family support Named point of contact for advice and support Continuity of support throughout the cancer
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journey Early referral to support services Information provision throughout the cancer journey Effective communication between professionals Widespread benefits advice Help with form completion Home visiting service for financial assessment and form completion Question 2. Money is now an object - Top three priorities Holistic service providing support and advice Practical support for accessing service provision Good local knowledge and signposting Written information Enhanced communication between professionals involved with the client Information and support at diagnosis
Tony, 58, is a master builder and lives in Darlington. “I was diagnosed in 2009 with a rare form of lymphoma (Burkett’s lymphoma). I was living in Cumbria at the time and was advised that I may not live another three
family who care for me. The CAB/Macmillan Service helped me to cope with both my illness and the reduction in my income.” Key issues Key findings
MONEY MANAGEMENT Living with and beyond cancer costs money Dealing with financial problems invariably results in loss of dignity, an increase in stress and worry Question 1. If money was no object Full time specialist cancer advice worker or central point of contact for advice Information packs of support services to be available at the point of diagnosis and available throughout the cancer journey Health centre or local identified based point of contact Underlying issues with the DWP resolved, such as
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delays on decision making Question 2. Money is now an object - top three priorities Specialist advice and access to financial support throughout the cancer journey Support to maximise income and assistance with budgeting or money saving ideas Access to advice and support regarding housing and community support issues
Jacqui, 58, is a special educational needs teaching assistant with a BA degree in education and curriculum studies. She lives with her husband in Darlington and they have a daughter with Asperger’s, who is studying at Northumbria University. “For several years I had been struggling with my health, then in 2013 I was diagnosed with Chronic Myeloid Leukaemia. I was
Key issues Key findings
EMPLOYMENT Employers need a better understanding of the effects a cancer diagnosis can have on the employee and the financial impact of income reduction Needs of carers should be recognised to ensure support by employers can be arranged, such as flexible working or time off for appointments without the impact of financial penalty Question 1. If money was no object Information and guidance on employment rights and the responsibilities of the employer under the Equality Act of 2010 to the employee Flexibility and understanding from employers Employer to signpost to support services Education around illness and its affects Question 2. Information and guidance on employment rights and the responsibilities of the employer under the
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Money is now an object - top three priorities Equality Act of 2010 to the employee Support and provision of advice throughout the cancer journey Signposting for specialist support Assistance with maximising income and financial capability Information on employment rights and options
Linda, 62, lives in Darlington with her
“I have a chronic long-term back condition and have regular intracathecal pain relief. In 2012, I was diagnosed with uterine and cervical cancer and I thought my world had
struggled to cope emotionally. Family and friends told me I should be applying for benefits, but I couldn’t face this alone I knew the system was complex and I just didn’t have the energy or motivation. Then a friend told me about the Macmillan Advice Service and it has been invaluable to me.” Key Issues Key findings
HEALTH AND WELLBEING One stop shop for support and guidance throughout the cancer journey Emotional and practical specialist support for the cancer patient and their families Question 1. If money was no object One person, providing face to face support from diagnosis to recovery to co-ordinate everything including employment and financial issues Early intervention with one main specialist support worker who can guide both the patient and family through the system, including dealing with death Question 2. Money is now an object – top three priorities Single source of information, support and advice provision, throughout the cancer experience from diagnosis to recovery or death Support plan to access financial guidance, support and specialist advice triggered on diagnosis Easier to locate accessible resources and find support for both the patient and their families. One stop shop for all information and support, situated locally and that is accessible for all.
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The information gathered from the event identified various issues important to people affected by cancer. A common theme related to information being the key factor to receiving a holistic service, and feelings
It was identified that the primary aim of the health care professional is the health and wellbeing of the patient, but that advice and financial support are essential to ensure that holistically the patient has no other pressures impacting on their health and wellbeing.
Following on from the event, and looking at other research, it is clear that a bespoke service is needed, with one central point of access, to ensure Darlington residents have support, information and assistance with financial capability, and have access to benefit provision during their cancer journey, from diagnosis and beyond. For many it was felt that the service should be face-to-face and offer a complete support package and holistic advice service to those affected by cancer. With the evidence above it is of paramount importance that the current service continues and also expands its boundaries.
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At present, the service operates two days a week offering eight
Darlington Memorial Hospital. People are waiting about two to three weeks for their appointment. Macmillan funding ends in September 2015, but the aim was always for advice services for cancer patients to be commissioned locally. Steps are being taken to train two volunteers to undertake a general assessment of a person’s needs. A home visiting service is clearly needed as some clients miss out because they cannot attend in person – their only choice then is to send a family member to the appointment or a telephone consultation. The DCCG has a “Clear and credible plan” for improving the health and wellbeing for Darlington residents (5). This plan highlights that among
reduce early death from cancer. County Durham and Darlington Foundation Trust’s operational plan document, “With you all the way” (6), represents its commitment to putting patients at the centre to provide the best experience and outcome. The Care Act 2014, dubbed “the most significant reform of care and support in more than 60 years”, has ushered in several landmark changes, including the first-ever national eligibility criteria for social care – linked to
have a duty to provide a universal information and advice service to link people up with preventative services and help them make decisions about their care. With both Public Health and DCCG having clear and strong aims to improve the lives and the health and wellbeing of the residents in Darlington, along with clear evidence that having a dedicated service fulfils this need, it should therefore be of paramount importance that one or both fund the service.
The Health and Social Care Act 2012 clearly states the importance of providing a strong forum where the views and experiences of patients,
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carers and the public can influence the commissioning process and improve the quality of health and social care services. This report provides an opportunity for local commissioners to listen to the voices of patients and carers and execute their statutory duties to involve residents in any changes that may affect the quality and delivery of local services. (7)
5 NHS Darlington Clinical Commissioning Group. Darlington Clinical Commissioning Group, clear and credible plan 2012-2017. May 2012 6 County Durham and Darlington NHS Foundation Trust. Operational Plan Document 2014-2106. April 2014 7.Health and Social Care Act 2012
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Dr James Carlton, lead cancer GP for the CCG: “The mix of people from both the service users and the clinical support outside of the consulting room was a real eye-opener. What came through was critically giving patients a voice and hearing first-hand of real experiences and difficulties of care, altering the dynamics outside of the main frame medical diagnosis. That has affected not just the patient, but has a huge ripple effect on the whole family and this has a severe impact. There is a clear need for the collaboration of services and distribution of resources and information in the on-going care programme.” Gill Findley, director of nursing for Darlington CCG: “The event sent a powerful message to key stakeholders and service providers of the real difficulties experienced by cancer patients. The providers and commissioners need to work collaboratively to ensure that the resources we have available can be targeted to help walk people through the minefield of benefits and advice. People need not only in advice on how to deal with the financial burden imposed from such a diagnosis, but what to claim for and how to claim it.”
Following the event a survey was undertaken to identify what local residents knew about benefit entitlement, accessing community care and
The results clearly identify why the service is so greatly needed.
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Q7 Which of the following support service were you NOT aware of: Please tick yes or no
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A great many thanks to the service users who donated their time and shared their cancer journey. Thanks also to the people who provided their time and expertise to ensure the event was a success. Peter Hill Marsha Porter – July 23, 1948 to January 10, 2015 Kenneth Simpson Linda Sewell Anthony Martin Jacqui McClean Kath Wall Paul Mann Michelle Thompson BEM Joanne McKenna – Macmillan Nurse Adam Bouabda – Film maker Healthwatch Darlington Rockcliffe Hall Hotel The Macmillan Information Centre and Volunteers at Darlington Memorial Hospital Macmillan Cancer Support
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Marsha had four children, Paul, Debbie, Sharon and Neil, and was grandmother to 10 and great-grandmother to three. Marsha was diagnosed with breast cancer in 2007 and, following chemotherapy and radiotherapy, was given the all-clear in 2013. Marsha was a bright enthusiastic and a larger-than-life person. She was a well-known and respected by members of her community and was everyone’s friend. Marsha was always happy to be involved with service promotion and ensured anyone she met with a cancer diagnosis was made aware of the service and what support was available. Marsha sadly died on January 10, 2015, in hospital surrounded by her family following a short illness.