Macmillan Cancer Support, Sue Ryder, Motor Neurone Disease Association, Help the Hospices, The National Council for Palliative Care and Marie Curie Cancer Care are campaigning together for free social care for people at the end of life. OPM, an independent research organisation, have been commissioned by the coalition to investigate end of life care systems in the UK where no costs (stemming from social care) are borne by the individual or their family.
Appropriate social care, as part of a package of end of life care, is often crucial in facilitating individual choice, maintaining dignity and supporting people to die in their place of choice, surrounded by their friends and family. When this care includes advocacy support the likelihood of older people remaining in control of their lives is greatly enhanced. Consider Alec’s cancer support advocacy story below.
I am Alec. I was born in 1941. I live by myself in a small town, I’ve lived there since 1976. I don’t have any family living nearby. I was diagnosed with CIDP (Chronic inflammatory demyelinating polyneuropathy) in June 2011 and I went to hospital for tests. I had to go every 6 weeks to receive treatment. This involved having fluids in my arms because I had a blood abnormality. I was also diagnosed with diabetes type 2 in 2013 which was being controlled by diet. However things still didn’t get right and I kept losing weight.
I went into hospital in September and, on my 72nd birthday, I was diagnosed with pancreatic cancer. This diagnosis made me realise that I needed help and support.
The Oncology team had given me a plan that involved me joining local groups. I had also been told about the cancer advocacy service. I contacted the number on the leaflet. They said that although the service wasn’t in my area, because I was having my treatment in the area they covered, they would send someone to see me.
Janet and Christopher visited me at home and I was able to tell them my story. I showed them the information that I already had and told them what I had been told so far. Janet, who was to be my advocate, was very sympathetic. She told me that she had many years’ experience of working with people with cancer.
We agreed that she would look into some of the groups that had been mentioned by the hospital team and that she would also contact the Oncology team to clarify one or two things for me. However, when she came back to see me I had just been given the news that I had secondary cancer of the lungs and I think they said the liver. I was told that I would only have another 6 months at the most to live. I had been hoping that the treatment might be the answer but now I had a different reality.
The plans that Janet and I had now to make were very different. I told her all about what family I had. I didn’t have a will. Janet and I are now making plans for when I am gone. We are looking towards appointing an executor and making an appointment to make a will. I am also making my own funeral plans with the help of Janet.
Janet is still looking to find groups that I may enjoy and she is concentrating on that in the New Year. I still have good mobility and she is looking for things that I can enjoy whilst I still have some time left to do it.
Evidence suggests that free social care at end of life could save the NHS money by reducing costly and unnecessary admissions to, and lengthy stays in, hospital. This research is gathering evidence to support calls for such free social care.
In addition to reviewing the published evidence a call for evidence is being issued because there may also be innovative local practices that are not widely known. This call for evidence gives people involved in this area the chance to share their experiences and learning more widely.
We would encourage all of our blog followers to forward this call on to colleagues and circulate it through their networks.
The call for evidence is open until 13th March 2014. The easiest way to respond is to click here and answer any or all of the questions outlined. You can then simply click submit and your responses will be automatically downloaded by OPM. Alternatively please e-mail your response to Leigh Johnston, Project Manager at firstname.lastname@example.org.