NHS data reveals insufficient access to Specialist Palliative Care services in Wales and almost one in four hospital beds used by people in their last year of life

Less than half of the people who died in 2012 from cancer and only 5% of people dying from other conditions received specialist palliative care according to a report* published today by the UK’s leading terminal illness charity and an independent think-tank.

The report also highlights the huge numbers of admissions and bed days that people experience in the last year of their life. Of the one million bed days used by people in the last year of life, a staggering 685,000 bed days were used by people with an unplanned emergency admission.

Marie Curie in partnership with the Bevan Foundation has undertaken an analysis of data on deaths in Wales in 2012 provided by the NHS Wales Informatics Service (NWIS).  The report analyses variance in access to specialist palliative care services and hospital activity in the final year of life. The report found that across all causes of death only 17% of people dying in 2012 had received specialist palliative care. Older people who died from cancer were found to be less likely to have received specialist palliative care than younger people, with 35% for those aged 85 or over compared with 58% of those aged 0-44.

Simon Jones, Head of Policy and Public Affairs for Marie Curie in Wales, said: “It is widely recognised that specialist palliative care delivered by clinical specialists can be invaluable to people with more complex conditions in the final months, weeks and days of their life and can take place in all settings, including at home or in specialist in-patient facilities such as hospices or hospitals.

“Wales has a higher level of specialist palliative care services per 1,000 deaths than England or Northern Ireland.  This is because there have been important improvements in recent years such as 24/7 clinical nurse specialists and specialist consultant support as well as better access to medication.  However, our report is a stark reminder of the work that still needs to be done to ensure that all those who need and would benefit from specialist palliative care get it. For example the recorded level specialist palliative care given to people dying from dementia is as low as 3.8%.”

Simon Jones added: “Obviously people will need the type of specialist care that can only be given in a hospital towards the end of their lives.  However, we know that they can also be more appropriately cared for in different places which includes their own homes.  For example in 2012 people dying from dementia spent over 50 days of their last year of life in a hospital bed.  In our report we suggest what we believe to be a very realistic target to reduce the number of emergency bed days in the last year of their life by 10%.  This would free up over 180 hospital beds across Wales.”

Director of the Bevan Foundation, Victoria Winckler, said: “Our analysis doesn’t only reveal the short-fall in provision of specialist palliative care, it also shows that the NHS has a rich source of data at its finger-tips which it can use to gain insight into its activities.  Our report suggests that NHS Wales should consider bringing together a whole range of information about care for dying people in Wales.  We believe this would support better planning and delivery of services.”
On the basis of the data available, the authors of the report have made the following recommendations:

We call on the Welsh Government and NHS Wales to focus effort on reducing the number of emergency bed days spent by people in their last year of life. We feel that a 10% reduction over a three year period is a reasonable target. This is the equivalent of 188 hospital beds.

1. Request that the Welsh Government and NHS Wales commission a study to establish whether the equity of access to palliative care across socio economic groups is the case or whether the current data is hiding the reality.
2. Urge the Welsh Government and NHS Wales to focus on those areas where there appears to be insufficient access to specialist palliative care services:
   a. For those with a non-cancer diagnosis
   b. For older people
3. Work needed to establish what is behind the apparent inconsistencies of provision across health boards. It is important to establish whether this is an issue of how services are being coded, whether there are specific barriers to access, variations of provision or some other factors.
4. Call on Public Health Wales to work with NHS Wales and independent sector providers to explore the feasibility of bringing individual level palliative care data into one national data set that captures activity and outcomes from hospices and specialist palliative care services, including information on demographic details, activity information and patient outcomes.

*To download the full report ‘Death and dying in Wales’, please visit our website.

Or for an overview, see our ‘Death and dying in Wales’ infographics:

• Bed days, admissions & receipt of specialist palliative care by age and diagnosis (English)

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