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Lucy’s personal story of palliative care impacts the leader of the World Health Organization

Author: Lucy Watts, MBE
02 February 2018

Lucy Watts, MBE, palliative care direct stakeholder, writes about the recent advocacy by direct stakeholders at the World Health Organization's Executive Board meeting in Geneva which led to a personal phone call from Dr Tedros Adhanom Ghebreyesus, WHO Director General.

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.

Lucy Watts, 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.

Their words had a huge impact on all those present, and this shows how important it is to get our voices into global discussions about their healthcare.

In her own words below, Lucy Watts, Global Youth Ambassador for ICPCN and a Young Avenger for Together for Short Lives, writes about this incredible experience and her work advocating for access to palliative care for children and young adults.

Lucy's story

I’m extremely privileged to work closely with two children’s palliative care charities; as an Ambassador and “Young Avenger” for Together for Short Lives in the United Kingdom as well as the International Children’s Palliative Care Network (ICPCN) as the Global Youth Ambassador. As a young adult of 24 years old, who has been receiving palliative care since her teenage years, I know the true benefit of palliative care for all, but especially for children and young people.

It is through my role as the Global Youth Ambassador for ICPCN that has opened my eyes to the world of palliative care and also healthcare generally outside the UK; in the UK we, although not perfect, have fantastic access to palliative care services, children’s hospices, we even have dedicated young adult hospice services, as well as access to medications we require such as opioid analgesics to manage distressing and debilitating symptoms and this is provided free at the point of use through our universal health coverage package, the National Health Service (NHS). Many other countries, especially lower and middle income countries, have little-to-no access to palliative care and also poor or no access to medications to relieve symptoms, especially opioid analgesics to relieve severe pain. This is especially true for children and young people. With an estimated 21 million children globally in need of palliative care and less than 1% of these children receiving that care, the statistics speak for themselves. Not only that, if it’s hard enough for adults in these countries to access medications such as opioid painkillers, it is almost impossible or children to be able to access pain relief in formulations suitable for children of their age.

I think about myself, I cannot take medications orally that absorb in my digestive system due to intestinal failure, which means my medications must come in other forms; my pain relief consists of a transdermal patch delivering a constant stream of the opioid Fentanyl into my body, as well as sublingual Fentanyl that absorbs under the tongue for any pain that breaks through. I also have access to intravenous Paracetamol (Acetaminophen). Many countries have little-to-no access to pain relief in child suitable formulations, and I think about the distress these children will be in, the agonising pain, and the anguish of their families of watching their child suffer, probably knowing something exists to help but that is not available in their country. However it’s not just about having paediatric formulations of such drugs but also the delivery route, especially at end of life when swallowing and absorption may be poor, thus liquid or non-oral formulations must also be available. I think of myself and what I’d do in another, less fortunate country; I’d be living with intolerable pain, unimaginable suffering and have no quality of life, for myself or my family. I am truly blessed to live in the UK.

WHO Executive Board

Last week, it was the World Health Organisation (WHO) Executive Board. 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 contacted me through Stephen Connor, who read my statement. Dr Tedros asked to speak with me directly. I was passed his details and planned out when best to call.

The phone call

That telephone call took place in the afternoon of 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 delved into 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 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 my mother too; formerly my mother was 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.

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 an 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. I always try to give a voice to the voiceless; part of this involves ensuring these 21 million unseen, unheard children needing palliative care have a voice and are visible in society. If they are not seen or heard, if no one fights for them, nothing will change. However, I, along with the International Children’s Palliative Care Network, the various children’s palliative care organisations across the world and all the fantastic children’s palliative care advocates, will fight to change this. We are the voice for the voiceless.

Talking about my work 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 with direct lived experience.

Palliative care must be part of universal health coverage

I explained how vital it is that people like myself have access to the palliative care we desperately need and will benefit from. 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 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 universal health coverage and that together we must work together to ensure it is included. We agreed that I am living proof of the success of universal health coverage packages and the inclusion of palliative care within these packages, and discussed how my story could be used as a case study to affect change at the highest level by showing the true benefit of universal health coverage 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 universal health coverage 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.

Meeting to take place in London

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.

At the meeting with Dr Tedros, I will ensure that children’s palliative care is not missed off the agenda. I will learn more about palliative care around the world through the palliative care direct stakeholder network I set up, Palliative Care Voices, as well as the guidance of professionals around the world, such as colleagues at the ICPCN, to truly understand the global children’s palliative care situation and be able to take that knowledge with me to Dr Tedros. I will share with him the shocking statistics, coming with those statistics the heart-wrenching suffering and struggles these 21 million children globally, and their parents and families, are experiencing due to a lack of access to palliative care and medications such as opioid analgesics. I come from the perspective of a person living with a life-limiting Illness, who suffers with excruciating pain, but who has access to pain relief, to antiemetics, to round the clock care, the support of a hospice and palliative care team and to all of this without facing financial burdens or even financial ruin. I’m living proof of the success of universal health coverage and palliative care; let us use my positive story to show the positive human and societal benefits of palliative care services, the need for universal health coverage packages, and the crucial need for access to medications, in both adult and child formulations and in different forms that are delivered and processed differently.

I live on a time limit

I’m 24 years old, and my life has been saved and enhanced by palliative care and I know I live on a time limit; in fact, I’ve exceeded the prognosis I was given. For whatever reasons, my words spoken at the Executive Board have touched Dr Tedros, so much so that he is keen to work together to improve access to palliative care and universal health coverage. He wants to work in partnership with me. I greatly appreciate his use of the word together, for all it implies, as this is a milestone where a direct stakeholder has secured personal contact and the opportunity for collaboration with the World Health Organisation (WHO) Director General himself. I will remain on top of this and ensure the meeting goes ahead and that Dr Tedros will act upon his words. For me, this is an opportunity to effect change at the very top level. 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. Children’s palliative care is a cause very close to my heart and I am grateful for this opportunity’s that I can ensure the often forgotten topic of children’s palliative care is firmly on the agenda and on the radar of Dr Tedros. I will ensure that children with palliative care needs aren’t missed from this golden opportunity, that their voices are heard and their need for and in my opinion, right to palliative care is not forgotten.

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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