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 – The event The stories The future Greater voice for cancer patients Feedback Comments Survey results Testimonies Acknowledgements Testimony to Marsha Porter 2
Introduction 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 organisations. 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. Cancer and the facts Today, more than 1.7 million people in England have been diagnosed with cancer. By 2030, this number will more than double and about a third more 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 outcomes and lower costs, and contributes significantly to the reputation of 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 3
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 diagnosis. (4) Living with and beyond 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: • An aging population and higher rates of diagnosis in older people; • Better treatment; • The fact fewer people are dying of cancer. People who have finished treatment have told Macmillan they experience difficulty returning to normal life, with key issues including: • Having to cope with short-term and long-term side effects of the cancer or its treatment; • Having to live with the knowledge that their cancer cannot be cured, even though they feel healthy; • Struggling financially as the household income decreases; • Experiencing problems returning to the workplace. (5) 1. Improving cancer patient experience: A top tips guide. Macmillan Cancer Support. 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 4
The service 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. Referral pathway Macmillan Centre District Hospital Nurses Staff Specialist Macmillan Advice & GP Surgery Self Support Referral Caseworker Macmillan Nurses CAB 5
Financial background 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. Prelude to the Darlington Has Cancer event 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. The event 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 organisations such as Healthwatch Darlington. 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. 6
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 7
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 . The stories Ken Simpson, 78, lives in Darlington with his wife, Betty. “ I have three daughters and several grandchildren. My wife and I are retired and 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 Service importance BENEFITS Face to face and one to one support Pro-active service Availability of home visits Availability of specialist advice and support Holistic support package Question 1. Consistent support as If money was opposed to short term no object funding allocations Easy to fill in forms or assistance to complete them Easily accessible service Network of support so advice is automatically offered on diagnosis Training and educating 8
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