Personal Stories

Personal stories

Personal stories of people accessing palliative care

Helena DaviesHelena Davies_ehospice

Hello, my name is Helena Davies. I’m 56 years old and live in the UK. Prior to my retirement due to ill health in 2007, I was a consultant paediatrician in Sheffield with a particular interest in medical education and the long-term effects of treatment for survivors of childhood cancer.

I have complex chronic health problems which are the cause of considerable disability including chronic pain and fatigue. I have impaired mobility and use a powered wheelchair. My very poor immunity means I have high risk of serious infection.

In addition to my other health problems, I had treatment for breast cancer in 2009 and 2010.

I feel passionately about the importance of palliative care both within the UK and globally. I serve as direct stakeholder trustee on the board of the Worldwide Hospice Palliative Care Alliance (WHPCA), and I contribute regularly to WHPCA advocacy and communications work.

This includes drafting press releases, reviewing and commenting on World Health Organization documents, contributing to message development around key global health events, and helping with the annual World Hospice and Palliative Care Day campaign.

I count myself lucky to be accessing high quality palliative care for an extended period – almost 10 years. This illustrates the critical point that palliative care is not just about end of life care, but can improve quality of life throughout the course of an illness, no matter how long this may be.

My palliative care team have provided both physical and emotional/psychological input which helps me to achieve a quality of life that would be impossible without their support.

For example, at times when my chronic pain has been so severe as to make life almost unbearable, the palliative care team have provided treatment which significantly modified that pain, enabling a reasonable quality of life to be restored.

I believe that access to palliative care is a basic human right that should be prioritised as part of Universal Health Coverage (UHC). I am committed to advocating for this both nationally and at a global level where palliative care provision is highly variable and the provision of simple, cheap medications such as opiates for pain relief could make an enormous difference to people’s lives.

Huyaam Samuels palliative care direct stakeholder South Africa_cropHuyaam Samuels 

Hi, I’m Huyaam Samuels. I’m 20 years old and I live in Cape Town, South Africa. I live with a rare life-limiting condition called Pseduo-Achondroplasia and Hypermobility Syndrome.

I’m able to access palliative care for the management of my pain and physical symptoms, as well as psychological support.

With palliative care, I am supported to live a good quality of life in the context of my health difficulties.

But that’s not where the relationship ends. I volunteer with Patch SA as a Youth Ambassador, and with the Worldwide Hospice Palliative Care Alliance as a writer for ehospice. I have spoken at international palliative care conferences and I am involved in various national and global palliative care advocacy projects, including the Patient Power project in South Africa, Palliative Care Voices, and World Hospice and Palliative Care Day.

I also get involved in global advocacy by contributing to palliative care messaging at the World Health Organization Executive Board meeting and World Health Assembly, where the big decisions about global health are made.

I’ve been on BBC World Service, a global radio programme to talk about my experience of pain and its management through palliative care.

Being listened to and consulted on palliative care issues, and taking the opportunity to make my voice heard is very empowering.

People like me, with direct experience of serious illness are a vital part of the solution. We must be engaged and involved in making positive change to improve access to quality palliative care services worldwide.

IMG_3940Petra Burger

Hi. My name is Petra Burger. 24 years ago, I had a serious car accident. I am actually grateful for the accident as it set me on the path that has shaped my life: to make the world a better place for people with disabilities.

Three years after the accident, my life was turned upside down. I was diagnosed with bladder cancer. At the time, I thought my life was doomed. But with excellent palliative care from hospice, I adjusted and came out the other side more determined to help others with disability and serious illness.

By the time I found out that I was diagnosed with an auto-immune disease, I had the ‘practice’ to deal with the diagnosis and treatment. I received palliative care and this really helped my life. My pain was managed well and I was able to discuss any issues that were causing me psychological or emotional distress with the hospice staff.

As well as accessing palliative care myself, I also work for the national Hospice Palliative Care Association here in South Africa as disability mainstreaming coordinator. I sit on the National Steering Committee for Palliative Care, a group coordinated by our Minister of Health to help the government to integrate palliative care into the South African health care system. I work on a number of hospice and palliative care advocacy projects, and contribute to international advocacy at the World Health Assembly, and through World Hospice and Palliative Care Day.

Unfortunately so many people in South Africa do not access palliative care, as they believe that it is only for those that are dying. But palliative care does not equal end-of-life care. The excellent palliative care I access at hospice helps me to live the life I do today. Hospice and palliative care is about living your best life.

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