I’ve decided to start a new blog to share my personal journey and experiences at…
This week it’s Hospice Care Week. All of you know I am a palliative and hospice care advocate having been a beneficiary of such services since I was 17.
You all know my story, being born with health problems and deteriorating through childhood but living a relatively normal life, before becoming seriously ill and disabled at 14 as my condition had progressed to such a degree. As a result I soon suffered multiple organ failure, developed extremely complex medical needs, I require round the clock care and have done for over a decade, I found out my condition was going to drastically shorten my lifespan at 17 and became palliative as there is no treatment, only management of symptoms and life-sustaining and quality enhancing interventions, that will only extend my life for so long, one day they will fail, and then being given a prognosis that means I shouldn’t have made 23, let alone turned 25 just over a week ago, and then on top of that also living with four incurable infections, having survived sepsis 13 times and having survived situations and complications many times when I was not expected to; poor mum has had the awful conversation in which she was told not to expect me to pull through, on more than one occasion. Yet, I am still here, and determined to be around for a lot longer. I put my survival and exceeding my prognosis down to the fantastic care I receive from the NHS and to the intravenous nutrition (TPN) and IV medication and the various other bags, tubes and interventions, however, what I feel has been one of the biggest factors of me living this long is the support of palliative care. Yes the above care and intervention has kept me in existence and kept the bare essential functions of my body sustained, but palliative care has kept me alive. There’s a difference. Palliative care has enabled me to live, to thrive and to truly flourish, and not just exist. Palliative care have helped my medical teams to most effectively and efficiently manage my symptoms to the best degree possible, and supported and enabled me to have the best possible quality of life that is within our capability to achieve. What a life I live as a result. The over seven years since I was told I was palliative and I was going to die very prematurely, have actually been the best years of my life in many ways. I have done and achieved far more in those seven years than I have done in the 17 years of my life prior to that time. I have carved a life for myself out of what is a difficult, upsetting and at times dire situation to be in. My illness sucks; it’s complications are cruel; I go through so much each day just to keep my body alive let alone to do anything in life; I’m dependent on those around me for almost everything; I live in in constant unbearable pain which horrific and tiresome and distressing – especially when people can’t see or understand it as even at its worst I can be smiley and chatty; facing constant barriers in life due to society refusing to adapt the world to meet the needs of everyone, disabled and non-disabled and treating disabled people like second class citizens, seeing us as unworthy burdens, who drain resources we don’t deserve, who contribute nothing to society, and who live miserable and pointless lives; and everything else I go through and all the barriers I face in my life. It really is not the existence I’d choose for myself. Yet, although the first few years of my illness weren’t as exciting as the last seven and a half years, the last decade I’ve been poorly and disabled have been the best years if my life. I love my life. I love that I get to do what I do. And I owe this life to palliative care.
This Hospice Care Week, Hospice UK are getting you all to share why you love your local hospice online using #HeartMyHospice to share the incredible work of hospice and palliative care services and why it matters to you, whether as a patient yourself, a family member or relative who is receiving or had received care from a hospice or palliative care service or a professional working in a hospice or someone who volunteers for a hospice; we are all here to share why we love and support our hospice. So wear something yellow #GoYellow and support your local hospice!
Overall, the hospice sector cares for over 200,000 patients with life-limiting and life-threatening conditions each year (Hospice UK). There are approximately 49,000 children and young people (under 18) who require palliative and hospice care. Then there are approximately 55,000 young adults 18-40 with life-limiting conditions. (Fraser & Together for Short Lives). So the scale of the need in the U.K. is clear. However, internationally the need is even greater. It is estimated that, globally, 40 million people are in need of palliative care, 78% of them people live in low- and middle-income countries. Worldwide, only about 14% of people who need palliative care currently receive it. (World Health Organization). Globally there are approximately 21 million children who require palliative care, but only 1% of them will receive the palliative care they need. (ICPCN).
With my former J’s Hospice nurse Bev Barclay MBE
I have benefitted from palliative care for seven and a half years. I am supported by The J’s Hospice, a young adult hospice-at-home service, who’ve been a huge support over the years and have fought tooth and nail for me to ensure my symptoms are managed and I have the best possible quality of life. I am also supported by a palliative care consultant who works jointly within Haven’s Hospices and also Southend Hospital. Then for a while I used to attend Jacksplace, a young adult hospice attached to Naomi House Children’s Hospice near Winchester, for inpatient respite, as The J’s don’t have a hospice building, but I lost funding in 2015 and I now have the 24/7 care I require at home. I owe them the fantastic life I live today. My care is an example of what palliative care is all about, and what it can achieve. I am appalled that I am lucky that I was born in the UK with our NHS and access to palliative care and medications such as pain relief. If I was to be born in a low income country – would I even be alive today? I certainly wouldn’t have the care, support, services and medication I have through living in the UK with the hospices, palliative care services and universal health coverage package (the NHS).
I’m a passionate palliative care advocate and a large part of my work is dedicated to hospice and palliative care. It’s something I am very passionate about. My work all started with my hospice nurse putting me forward for my first opportunity, in which I began working with the U.K. children’s palliative care charity, Together for Short Lives. TfSL asked me to attend their reception in the House of Commons and to give a speech about the transition to adult services, especially for young people with life-limiting conditions. I’ve worked with TfSL for 5 years now, and have contributed to a variety of different campaigns, bodies of work, spoken at a variety of events and appeared in media for the charity. They got me started in my advocacy and voluntary career of sorts. In 2016 I also started working with the National Council for Palliative Care, which merged with Hospice UK in 2017, and I sit on the Hospice UK People in Partnership Forum. However I also do work internationally in palliative care, including becoming the first Global Youth Ambassador for the International Children’s Palliative Care Network from 2015 onwards and as an independent consultant for the Worldwide Hospice Palliative Care Alliance. This included meeting Dr Tedros, Director-General of the World Health Organisation, as a result of my palliative care work and forming a working relationship with him that I am keen to develop and utilise to raise the profile of palliative care internationally. I’ve also worked with a variety of other organisations and charities in the palliative care field, including speaking at palliative care events, appearing in hospice and palliative care videos including presenting a palliative care patient empowerment film for the National Council for Palliative Care, supporting palliative care research, attending meetings and events and more. I want to do all I can to raise awareness of hospice and palliative care, and to campaign to ensure everyone who requires palliative care has access to it.
So please to support #HospiceCareWeek and share your #HeartMyHospice stories. Consider making a donation and supporting your local hospice for the vital work they do. You can find out about your local hospice using the Hospice UK website – click here.
Also, on Friday this week (12th October) it is aptly a day to celebrate global children’s palliative care, in the form of #HatsOn4CPC. So please wear your hat on Friday and make a donation to the International Children’s Palliative Care Network and if possible your local children’s hospice. Find out more on the website – click here.