At 14 years old, Lucy Watts was given less than five years to live. Neuromuscular disease and intestinal failure led to a deterioration of her health to the point that she is mostly bed bound, but thanks to the care provided by the UK’s National Health Service, she has outlived her prognosis and leads an active life campaigning for an end to needless suffering.
A new report launched this week by The Lancet Commission on Access to Palliative Care and Pain Relief estimates that 61.5 million people worldwide experience serious health related suffering each year.
Today, 7 April, is World Health Day. This year’s theme is: “Universal Health Coverage: everyone, everywhere.” This means that all people can obtain the health services they need without suffering financial hardship when paying for them.
Lucy says: “Universal Health Coverage should be available to everyone, everywhere. Palliative care is an essential part of Universal Health Coverage – I owe my life, quality of life and success to the support of palliative care funded by our UHC package, the UK National Health Service (NHS).”
As part of her role as consultant to the Worldwide Hospice Palliative Care Alliance (WHPCA), Lucy has started Palliative Care Voices, a global independent network of people living with life-threatening illnesses raising awareness, sharing stories and campaigning on palliative care, contributing to global palliative care advocacy.
Lucy says: “People do not demand an end to this suffering for themselves and their families – partly, perhaps, because we do not know what is possible.”
Through speaking out about her own condition, and demanding quality healthcare including palliative care, Lucy inspires others to do the same.
She says: “Palliative care for me has given me quality of life and I credit it with me outliving my prognosis, too. Universal Health Coverage is essential. I am alive today thanks to healthcare that’s free at the point of use, through our NHS, giving me access to professionals, treatments, surgeries, medications and more, including palliative care.”
Huyaam Samuels, a 19 year old student from South Africa, has a rare disease and suffers from chronic pain, but that does not stop her from raising her voice to help others.
Huyaam has a rare life-limiting condition called pseduo-achondroplasia and hypermobility syndrome. Among other painful symptoms, this causes her joints to dislocate without warning and leaves her in chronic, intense pain.
Despite her health challenges, Huyaam is a tireless advocate for hospice and palliative care for all who need it.
According to the World Health Organization, palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening/limiting illnesses, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Huyaam says: “Palliative care gave me hope when there was none. My palliative care team help me to manage my pain and symptoms and this allows me to go to university.
“They ensure that I am medically fit, psychologically and spiritually supported and able to attend my lectures.
“My specialists and physiotherapists ensure that my chronic pain is well managed and that I am doing my daily exercises accordingly to my weekly workout regimes.”
Palliative care is an essential, defining part of UHC, and on World Health Day, Huyaam is adamant that everyone, everywhere should be able to access this essential health service when they need it.
Huyaam is a founding member of Palliative Care Voices. She says: “Through Palliative Care Voices, we aim to address needless suffering by empowering ourselves to raise our own voices to demand quality palliative care for all.”
She says: “As a palliative care recipient, I know from experience the struggle of the failure to recognise the importance of palliative care myself in my country. It took years for a doctor to believe how much pain I was in daily, how I needed my lifestyle adapted, and most importantly that I needed palliative care.
“Palliative care is an essential, defining part of Universal Health Coverage, and today, on World Health Day, we must make sure that everyone, everywhere is able to access hospice and palliative care if they need it.”