People with terminal illnesses and life-limiting conditions in Wales – especially dementia, heart failure and neurological conditions – face a range of barriers in accessing hospice and palliative care according to a new report launched today by a cross-party group of Assembly Members.
An estimated 23,000 people in Wales have a palliative care need every year, however, at least 6,000 people with life-limiting and terminal conditions are not receiving the expert care they would benefit from.
The Assembly’s Cross Party Group on Hospices and Palliative Care’s new report says unequal access to appropriate care for people with terminal and life-limiting conditions is influenced by a range of complex factors. These include: people’s diagnoses, age and where they live.
For example, people with diagnoses such as dementia or heart failure are often referred for expert end of life care in smaller numbers and at a later stage than people with a cancer diagnosis. Also, those who are aged over 85 or who live in a care home often struggle to get the right support.
In addition, there are significant barriers faced by providers of hospice and palliative care that contribute to unequal access to care.
The report highlights the shortage of GPs, Community Paediatric Nurses and District Nurses which means people miss out on palliative care delivered at home or in their communities. This affects children and young people with terminal and life-limiting conditions, as well as adults.
Perception and understanding about the support available from palliative care and hospice services, both among the public and healthcare professionals, can adversely affect access to care, leading to late referrals or low rates of referral for specialist support.
To widen access to palliative and hospice care in Wales, the cross party report recommends that:
- The Welsh Government ensures that action and delivery plans for people with all health conditions that may benefit from a palliative care approach are joined up.
- The Welsh Government develops a robust action plan to tackle palliative care workforce gaps, identifying District Nursing and community paediatric nurses as a key priority.
- Health boards ensure there is comprehensive out-of-hours coverage for people’s end of life care across the whole of Wales, including funding paediatric out of hours services.
- Hospices and palliative care providers educate colleagues across the health and care sector about the role of palliative care and the range of services available to people.
Mark Isherwood AM, Chair of the Cross Party Group, said:
“Our wide-ranging inquiry looked in depth at the many different factors that currently limit access to palliative care in Wales.
“While there are significant challenges to overcome, there are also many examples of pioneering work by hospices and NHS providers of palliative care that are helping their services reach more people.
“As our report makes clear, an integrated approach based on effective collaboration between the NHS and voluntary sector organisations is essential if we are to radically improve access to hospice and palliative care for everyone across Wales in the future.”
Dr Catrin Edwards, Policy and Advocacy Manager Wales at Hospice UK which provides the Secretariat for the Cross Party Group inquiry, added:
“This report gives us a much better understanding of the barriers faced by both individuals who need hospice and palliative care, and the providers of these services.
“The report offers a way ahead, evidencing what needs to change at local and national level in Wales to deliver equal access to hospice and palliative care so that everyone who needs this receives the right care at the right time.”
The Cross Party Group on Hospices and Palliative Care received evidence to its inquiry between November 2017 and March 2018. Its remit included exploring and understanding the factors contributing to unequal access to hospice and palliative care and the barriers faced by care providers in improving access.
A copy of the Cross Party Group’s report is available in the link below.
Notes to editors
- Hospice UK currently provides the Secretariat for the Cross Party Group on Hospices and Palliative Care. This media release is issued on behalf of the Cross Party Group.
Hospice UK is the national charity for hospice and palliative care. For further information about hospice care visit our website www.hospiceuk.org
- Hospice UK has 15 members in Wales – 13 adult hospices and two children’s hospices.
- Hospices in Wales support more than 10,000 people each year. They provide a wide range of services including; in-patient care, day therapy, home-based care and bereavement support.
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