What if we viewed lived experience as an asset? As an asset of professional, economic,…
Last week, it was the World Health Organisation (WHO) Executive Board. The WHO is an international organisation who direct and coordinate international health within the United Nations’ system. The Worldwide Hospice Palliative Care Alliance (WHPCA) and International Association for Hospice and Palliative Care (IAHPC) amongst other organisations sent speakers to the Executive Board. I, along with two other palliative care direct stakeholders, Huyaam Samuels and Sharon Thompson, sent messages to be read by palliative care advocates attending the meeting. Our words had a huge impact on all those present, and this shows how important it is to get our voices into global discussions about our healthcare. It was fantastic to have the direct stakeholder voice included at such an important high-level meeting. Dr Tedros, the Director General of the WHO, picked up on something in my message and requested to be put in contact with me through Stephen Connor, who read my statement at the Executive Board meeting. Dr Tedros asked to speak with me directly. I was passed his details and planned out when best to call.
That telephone call took place yesterday afternoon, Tuesday 30th January 2018. I felt it was a great success. I shared my story and the points important to me and other direct palliative care stakeholders to be met with gratitude, respect and kindness from Dr Tedros, who I could tell valued the opportunity to speak with me as much as I valued the opportunity to speak with him. I shared my story, in brief, sharing who I am, my life with my illness, and the benefit of living in a country with universal health coverage in the form of our amazing National Health Service (NHS) which includes palliative care, having access to the medications such as opioid analgesics in forms that I’m able to absorb since taking tablets or liquid medication that are oral or enteral in form is futile due to intestinal failure, and having a state-funded care package that enables me to live at home. I explained how palliative care has transformed my life, giving me a far superior quality of life than anyone could’ve predicted and has also supported my mother and my sister and wider family. Dr Tedros appreciated the impact of palliative care not just for me, but for mum too; as you all know, mum was formerly my full time carer until she developed a brain tumour and suffered a post-operative stroke and subsequently developed epilepsy, although she now provides some of my care again, providing the double-up care alongside my intensive care nurses.
I also discussed how palliative care has enabled me to go on and be a voice for others, to work with charities and organisations and to become an advocate for people in similar situations to myself, for which I received my MBE in 2016, aged only 22, for services to young people with disabilities. He said I am a true leader and a champion for others, which I greatly appreciate, as well as expressing pride for my achievements.
This led onto me discussing the international direct stakeholder network I set up, Palliative Care Voices, which gives direct palliative care stakeholders like myself, that is people with life-limiting conditions and their carers and families, the platform and opportunity to speak up and contribute to global palliative care advocacy. Dr Tedros said how important it is to hear from people like myself who require and benefit from these services.
I explained how vital it is that people like myself have access to the palliative care we desperately need and will benefit from. I am incredibly fortunate in a rich, developed country with universal health coverage from our NHS, access to the palliative I require from community palliative care services, a young adult hospice and when in hospital, as well as access to medications to manage my distressing symptoms such as pain. My care is a shining example of the benefit of palliative care as part of a universal health coverage package, how well it works, the benefits and the cost savings to the government and I explained how it’s good to have a benchmark, a successful case study to work from and attempt to replicate. I said that I didn’t know what I’d do if I lived in a lower or middle income country where there is little to no access to palliative care, poor access to medications such as pain relief and not the funds or resources in many of these countries to rectify this and to replicate the fantastic care I receive in the UK. I understand that my experience is not common outside of the UK, and how scarce palliative care is around the world, particularly in lower and middle income countries. The lack of palliative care services around the world and the lack of inclusion of palliative care in the universal health coverage agenda is something I am keen to tackle through my direct relationship with Dr Tedros.
Dr Tedros also mentioned it being the 70th anniversary of the creation of our NHS this year and said how he wished that the NHS70 campaign – of which I’ve played a small part – would share their learning and success story with other country and organisations such as the World Health Organisation for it to be understood and potentially be replicated in other countries in future.
Dr Tedros has asked that I meet with him next time he is in London. He wants to hear my story in more detail when we meet as well as to discuss how we can move this forward, in his words, ‘together’. He has said he would like to work together to improve the inclusion of palliative care in universal health coverage packages and to improve access to palliative care for people like myself. I appreciate his use of the word together; I truly believe he will work with me to create the necessary change and through the use of my story as a successful case and benchmark, as well as the needs and experiences of those in lower and middle income countries who need and will benefit from palliative care, that we can reach these political members of state to show the real benefit and need for palliative care and how vital palliative care is and how it must be included in universal health coverage packages. I understand that my story represents the benefit of the success of access to, availability of and of the government funding for palliative care and access to medications and I fully appreciate the access to palliative care and medications I receive through living in the UK and the funding of these services are simply not possible in most countries, especially lower and middle income countries. Crucially I will be sharing the voices of others about what is possible in different settings around the world and enabling voices to be heard.
In preparation for meeting with Dr Tedros, I will be consulting with the direct stakeholder network Palliative Care Voices that I created to secure the experiences and views of fellow direct stakeholders around the world, including those in lower and middle income countries, to inform me and to enable the input of their voice, experiences, thoughts and feelings onto my meeting with Dr Tedros. I will take with me the voices and experiences of direct stakeholders, including Huyaam and Sharon mentioned earlier who also had their words spoken at the Executive Board, and ensure that it’s not just my voice he hears, but the voices of many.
For me, this is an opportunity to affect change at the very top level. It means I can take with me to the meeting with Dr Tedros the experiences of direct palliative care stakeholders around the world. I am truly humbled that he has taken time out to speak with me and will meet with me. He expressed a wish to work closely with me and to keep in touch and I intend to support Dr Tedros in his work, to advise and inform and to work with him towards a brighter future.
What an opportunity. I am truly privileged. I do hope this will be the start of something amazing in the palliative care world, that I can truly make a difference at the highest level through this relationship with Dr Tedros. The telephone call was a milestone for me in that I was speaking to the Dr Tedros, WHO Director General, but also that I was talking to someone who treated me as if I was the most important person in the call. His kindness and appreciation for my work and expressed pride at my achievements has been heartwarming. I do hope this will be the start of something great, not for me, not for Dr Tedros, but for the world itself.
Thank you, Dr Tedros. Here’s to a successful meeting when you are next here in London and to working together to get palliative care the recognition and investment it needs and to enlighten the top political leaders to see the human benefit of palliative care. I extend my eternal gratitude for speaking with me, treating me with such kindness and respect, for valuing my input and for any opportunity to work in partnership with you.
Below is the video showing Dr Stephen Connor, Executive Director of the Worldwide Hospice Palliative Care Alliance (WHPCA), reading my words at the WHO Executive Board.
I’m a direct palliative care stakeholder consultant for the WHPCA, part of the role being to set up the Palliative Care Voices network. In addition to my work with the WHPCA, I also work with other palliative care charities: Together for Short Lives and Hospice UK in the United Kingdom and the International Children’s Palliative Care Network (ICPCN).