This blog was originally published on Dyingwell.uk, a website owned by Clair Fisher.
In Clair’s words: “Dying Well was my retirement project. A space for me to document my personal journey, to explore the evidence around wellbeing in terminal illness and test out some of the theories.”
I’ve written before about how valuable my first contact with the community hospice team was (Blog: Hello Hospice). I know I’m privileged to be able to receive such care and it’s all funded through charitable donations. Marie Curie are currently campaigning for an addition to the Health and Care Bill that would put the requirement to provide end of life care on the same footing as maternity services. Excellent end of life care would benefit individuals and their families, but also make a difference to the system by enabling more people to die at home with the support they need. You can read more about the Bill and the proposed amendment in the Marie Curie Briefing note. You can add your support to this important cause by signing and sharing the petition.
Today I was pleased to share my story with a round-table of Parliamentarians chaired by Baroness Ilora Finlay. I’ve shared the notes of what I said below.
Hello and thank you so much for the opportunity to speak to you today and to share my story. My professional background is as a UK Civil Servant, a Policy Professional and associate of the What Works Centre for Wellveing. I was diagnosed with stage 4 Bowel Cancer in 2018.
Since my diagnosis, all my treatment has been palliative. That is to say I ticked the box saying ‘palliative care’ on the consent form and the treatment has always been geared to manging symptoms and slowing progression of the disease. I have always understood my diagnosis to be terminal and have never expected to be fully cured. However despite ticking that box on the oncology consent forms, I have never been offered what we might consider to be proper, holistic palliative care by a hospital based palliative care team. I have been offered Surgery, Chemotherapy and Radiotherapy and my options at each point have basically been to accept or refuse each of those in turn. The reality of refusing those treatments with no palliative care plan in place is that I would have effectively been left on my own, or with just the support of my GP.
What has been transformational for me was coming under the care of the community hospice team just over a year ago. Initially this was because my pain was not being managed. My GP would only issue codeine in ever increasing doses and this didn’t really touch my pain and left me headachy and constipated. Because I knew a nurse who worked at the hospice I knew to ask for a referral. The pain team there were able to give me great advice to get my pain under control, but I was also able to ask for the first time questions about how I might die and make practical preparations for that.
Crucially I felt that the hospice team weren’t clock watching, that they were accessible and that they were local to me. I was able to make my Advanced Care Plan, involve my family in talking about and planning for my death in a way that has brought them great reassurance and alleviated fear. Family counselling was offered.
Palliative care has meant that I’ve been able to keep working and keep functioning as a mother and a wife rather than living as a patient requiring care.
Since I first got sick I have been determined to hold on to my sense of identity. The brain fog and fatigue that that comes with chemo for me is no longer worth the extra few months that it might buy me. I have watched in horror as I’ve seen obviously frail and near death people shuffle week after week onto the chemo ward. Their visits only seeming to end when they die.
I’ve promised myself that if I was ever that sick I would stay on the sofa or in my garden rather than persist in coming to hospital. Yet I understand why they do, because if hospital is the only place where they get the medical care they need, have nurses to talk to and specialist doctors to prescribe for the pain – saying no to that feels like being cast adrift.
When I refused to have more chemo this summer, I didn’t feel that I would be left alone to die at home. I have been able to access advice on diet, medication, exercise and the kind of holistic care that prioritizes my wellbeing.
I want to be clear headed and well to enjoy my garden in the Autumn and hopefully Christmas. It’s palliative care given by St. Catherine’s Hospice that has given me the confidence to make that choice. A choice that is actually cheaper for the NHS as well as better for me and my family.
St Catherine’s Hospice have been brilliant, but they have not received a penny for my care because community services such as I have described are not commissioned where I live. I know that as a white, middle class, educated cancer patient, I am bang in the demographic of people who are most likely to receive charity provide hospice care. It seems to me that end of life care is such a critical service that it shouldn’t be left to chance.
I’m 100% behind the proposed amendment to include Palliative and End of Life Care in the Health and Care Bill because we know that early intervention palliative care can improve quality of life by taking a holistic approach to the terminally ill person and their family.
I also believe that properly integrated palliative care would improve the efficiency of the health and care system by helping people make better choices about treatment that is appropriate for them, and enabling people to be more quickly discharged from hospital with adequate support. My heart breaks for all the people who die in hospital when they wanted to die at home.
It seems to me that Palliative Care is the missing link in creating a genuinely integrated health and care system; and if that is the goal of this Bill then to exclude it would be such a wasted opportunity.