The Cross Party Group on Hospices and Palliative Care received evidence to its inquiry between November 2017 and March 2018. During the course of the inquiry written submissions were received from 26 organisations. Two oral evidence sessions, including one in North Wales, and a roundtable discussion with practitioners, clinicians, families and carers of people needing palliative care, were held.
We would like to thank all those who have taken the time to contribute to this inquiry by giving evidence. Lists of those who gave oral and written evidence are included in Annexes A and B to this report respectively. Organisations that contributed to the roundtable discussion are listed in Annex C.
Context
Around 33,000 people die each year in Wales. It is estimated that around 23,000 people in Wales have a palliative care need at any one time. Around 1,000 children and young people in Wales have life-limiting conditions.
Palliative care is defined by the National Institute for Health and Care Excellence (NICE) as “the active holistic care of patients with advanced progressive illness.” End of life care is a specific aspect of palliative care for people considered to be in the last year of life.
Palliative care is delivered by a multi-disciplinary team, which can encompass colleagues in primary, secondary and tertiary care.
Charitable hospices provide care free of charge to those who need it. Hospice UK states: Hospice care seeks to improve the quality of life and wellbeing of adults and children with a life-limiting or terminal illness, helping them live as fully as they can for the precious time they have left. It aspires to be accessible to all who could benefit and reflect personal preferences and needs.
The Welsh Government and NHS Wales End of Life Care Delivery Plan 2017-2020 sets out national priorities for developing palliative care. The End of Life Care Implementation Board is tasked with delivering the plan and reports annually on progress.
Why the Cross Party Group looked at this issue
Research from the UK and internationally consistently indicates that access to palliative care is unequal.
Across the UK it is estimated that around one in four people who could benefit from palliative care are missing out; this represents around 6,000 people in Wales.
Factors known to contribute to unequal access to palliative care are geography, care setting, diagnosis, age, ethnic background and having a spouse or partner.
There has been little research that looks specifically at the factors affecting equal access to hospice and palliative care in Wales.
Terms of reference
The inquiry focused its work on the following key areas:
understand what factors lead to unequal access to hospice and expert palliative care for the population of Wales, considering learning and evidence at both UK and Wales levels;
consider what actions palliative care providers and interested parties are currently taking to improve access to expert palliative care for all members of their populations;
explore and understand the barriers palliative care providers and interested parties face in improving access to their services;
consider what national and local levers would support improving equality of access to hospice and palliative care in Wales.
About the Cross Party Group
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The purpose of the Cross Party Group on Hospices and Palliative Care is to maintain and develop understanding and interest by Assembly Members of issues affecting hospice and palliative care services, in the furtherance of improving end of life care in Wales.
Cross Party Group Chair: Mark Isherwood AM, Welsh Conservatives, North Wales
Cross Party Group membership (at the time of publication):
