Tackling inequalities in end of life care
Thousands of people across Wales are missing out on palliative care, says Marie Cure policy and public affairs manager Paul Harding.
We’re all going to die. Sorry to be blunt, but we are.
Many of us, and increasingly so in the future as we live longer, will have complex needs at the end of our lives. For a growing number of people this will mean more than one terminal or life limiting illness
32,000 people die each year in Wales, this figure will increase as the post war so-called ‘baby boomers’ get older.
We know from research that around 6,200 who die in Wales each year miss out on palliative care, either because they aren’t offered it or they don’t know it’s available.
Sadly factors completely unrelated to a person’s health can affect how easy it is for someone to get high quality end of life care. Access to suitable or appropriate care can be more difficult if you are from a black or minority ethnic background or if you are LGBT. The same is true if you live in rural isolation, if you’re in prison, homeless or from a deprived area.
Marie Curie is the largest specialist provider of end of life and palliative care in the UK and we are deeply concerned about the inequalities faced by people in both their access to care and their experience of it.
Providers of sheltered housing can play a major role in the health and wellbeing of their tenants.
While sheltered housing does not normally provide care, residents are able to get care and support from social services in exactly the same way any other local resident would. In sheltered housing the warden/estate manager can be key in signposting and facilitating this.
All the evidence we have points to a good end of life care being provided once a need is identified.
High quality end of life care can and regularly is delivered in a patient's home – and this is often the preferred setting for both patients and their families. This care is often provided by generalists such as GPs or district nurses. On occasions it will need the involvement of palliative care specialists whether they are working in the NHS or in the independent sector such as Marie Curie.
The Welsh Government recently refreshed and updated its end of life delivery plan which sets out a framework for local health boards to deliver care. The plan also sets out the vital role that local government can play in supporting communities and individuals to have a healthy approach to end of life care.
Some best practice does exist; in the north-east of England a project has been developed. NHS Public Health Intelligence North East published its ‘A Good Death Charter’, which sets out key principles for ensuring the right to a good death is realised wherever possible. The resultant Good Death project in Tyne and Wear provides practical support to anyone in the final years of life so they can stay in their own homes for as long as possible. The support ranges from personal and emotional support to property repair and modification, and is delivered primarily by a Marie Curie-trained project worker recruited by Home Group, a social landlord. The pilot for this project involved partnership working between Home Group, Marie Curie, Public Health North East, district nurses, GPs and technology providers and produced very encouraging results:
- Clients reported an 87% improvement in feeling of wellbeing
- 65% improvement in feeling of being in control
- 10% reduction in A&E attendances
- 55% reduction in GP consultations
Imagine being homeless? Homeless people often die young. Drug and alcohol issues are common, as are mental health problems and of course sleeping outdoors in all elements is both dangerous and impacts badly on an individual’s health.
Homeless hostels give shelter and support to people who are without fixed accommodation. But they’re only equipped to deal with basic health issues and by no means equipped to deal with the complexities of end of life care.
- Paul will be speaking about end of life care at CIH Cymru's Older people's housing conference on 5 December in Swansea. Find out more and book your place