It is a sad reality that many people with life-limiting conditions are missing out on vital care that could transform the precious time they have left and also help support their families.
This is partly because of socio-cultural resistance to talking openly about death and dying and also due to a complex interaction of demographic factors that mean some groups in society do not have equal access to expert palliative care.
Earlier research by Hospice UK shows that across the UK as a whole more than 100,000 people with terminal and life-limiting conditions are not able to access the expert care they need at the end of life, including hospice care.
In Wales the national picture of the level of current unmet need is not yet clear – largely due to a lack of comprehensive data. However, we know that at least 24,000 people each year could benefit from some form of hospice or palliative care.
Around half of these people will be supported by hospices and others will be supported by their GP or specialists in the NHS. However, there will be a significant number of people who are not given access to the appropriate care that could support them at the end of life.
Lack of data about unmet need is, in itself, a barrier to improving access, as highlighted in a recent report Hospice care in Wales 2017 , published earlier this year by Hospice UK.
People from certain groups in society often struggle to access palliative and end of life care.
For example, those with conditions such as dementia, heart and liver failure and lung disease are often referred for end of life care in smaller numbers and at a later stage than people with a cancer diagnosis.
This can sometimes be due to low awareness among some healthcare professionals about options such as hospice care in improving quality of life for people with a terminal diagnosis.
In addition, while people aged 85 or over account for 39 per cent of deaths, only 16.4 per cent of people in this age group access specialist palliative care according to research by LSE. This can be as a result of attitudinal differences to the care of older people, a focus on curative treatments within hospitals and a lack of resources. Wales has the largest and fastest growing proportion of older people in the UK so tackling the end of life care needs of this group needs urgently to become a greater priority.
Rurality can also affect access to appropriate palliative care. The shift of palliative care from the hospital setting to the home means a complex coordination of care for community nurses in areas that often have uneven access to services. Rural communities in Wales see a greater percentage of older people than in towns and cities according to the report Wales Public Services 2025, further compounding the problem.
Lesbian, gay, bisexual and transgender (LGBT) people can experience barriers to accessing end of life care services because of discrimination – whether direct or indirect – or services that are not designed to meet their needs, as highlighted in earlier research by Marie Curie
And the provision of hospice and palliative care for children and young people in Wales can be sparse, with marked variations in access to care across the country.
There are only two children’s hospices located in Wales, which means that families often need to travel long distances to access necessary respite or specialist end of life care. Also, due to the highly specialised nature of paediatric palliative care, there are a limited number of consultants working in this field across Wales, with only one consultant specialising in palliative care at transition to adulthood.
Hospices are leading efforts to tackle some of these barriers and widen access to end of life care, especially by reaching out to more people in their communities.
For example, Hospice of the Valleys is working with the Alzheimer’s Society on the CARIAD project to extend its services to people with dementia. The project has seen a 75% increase in referrals for patients with dementia during its first year.
Also, The Paul Sartori Foundation’s Advanced Care Planning project is successfully reaching out to the wider community in Pembrokeshire to raise awareness of hospice and palliative care services at an earlier stage, often before a person is diagnosed with a terminal condition.
By starting conversations and engaging people early, people are empowered to take control of their affairs and become more knowledgeable about the palliative care options available to them.
Today (November 16) the Cross Party Group on Hospices and Palliative Care will launch a new inquiry looking at the provision of hospice and palliative care across all regions of Wales.
It will call for evidence from a range of care providers and representatives across the NHS and third sector to help provide a fuller picture of access to this type of care and will explore opportunities and challenges to improving equality of provision across the country.
Crucially, the inquiry will seek to understand what national and local levers would support improving equality of access to hospice and palliative care in Wales.
We hope the inquiry will help provide a much fuller picture of need across Wales and also generate opportunities for improving access to care, so that more families do not lose out on the support they desperately need for their loved ones at the end of life.
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