Lucy’s personal story of palliative care impacts WHO leader

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Last week, the Executive Board of the World Health Organisation (WHO) met in Geneva. The Worldwide Hospice Palliative Care Alliance (WHPCA) and International Association for Hospice and Palliative Care (IAHPC) amongst other organisations sent representatives to speak at the meeting.

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 contacted me through Dr Stephen Connor, Executive Director of the WHPCA, who had read my statement. Dr Tedros asked to speak with me directly and passed on his phone number for me to call.

The call took place yesterday afternoon, Tuesday 30 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, and was met with gratitude, respect and kindness from Dr Tedros.

I could tell he valued the opportunity to speak with me as much as I valued the opportunity to speak with him.

I told him 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 (UHC) in the form of our amazing National Health Service (NHS).

The NHS 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, sister and wider family.

Dr Tedros appreciated the impact of palliative care not just for me, but for my mother too; formerly my mother was my full time carer until she developed a brain tumour, suffered a post-operative stroke and subsequently developed epilepsy, although she now provides some of my care again.

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. This network 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 me.

I explained how vital it is that we have access to the palliative care we desperately need and will benefit from.

I am incredibly fortunate in a rich, developed country with UHC 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 UHC package, how well it works and the great value it adds for relatively low cost to the government.

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.

He agreed that palliative care must be a part of UHC and that together we must work together to ensure it is included and that my story can be used as the case study for when things go well.

We agreed that I am living proof of the success of UHC packages and the inclusion of palliative care within these packages, and discussed how my story could be used to affect change at the highest level by showing the true benefit of UHC and palliative care.

Many countries don’t have the resources necessary to fund palliative care services; they have limited capability, there isn’t the understanding of the benefit and need for palliative care and there is often resistance from governments to institute UHC packages at all, let alone ones that include palliative care services. This is an issue I am keen to tackle through my direct relationship with Dr Tedros.

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 UHC 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 UHC 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 the meeting with Dr Tedros, I will be consulting with the direct stakeholder network Palliative Care Voices. I created this network 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. This will enable me to be a vehicle for the voices of stakeholders the world over.

I’m not at this meeting for myself as an individual but there to bring the direct stakeholder voice to Dr Tedros, the World Health Organisation and to the international stage.

So the members of the Palliative Care Voices Network will be consulted to share their story as I need to understand and collect the thoughts, feelings and experiences of direct stakeholders, including those in lower and middle income countries, so that I can carry them with me to the meeting.

This, 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 effect change at the very top level. It means I can take the experiences of direct palliative care stakeholders around the world with me to the meeting with Dr Tedros.

I hope it’ll give me the opportunity to work together with Dr Tedros and others and to be that vehicle for the voices of all direct palliative care stakeholders and that our collective voice will make an impact.

Dr Tedros expressed a wish to work closely with me and to keep in touch and I intend to support him in his work, to advise and inform and to work with him towards a brighter future.

I’ve spoke to many eminent professionals through my work but never have I spoken to someone so high up in the world who was so down to earth and appreciative of speaking with me and genuinely interested in and caring for my story, views and input.

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. 

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