Our Motion today notes the Cross Party Group on Hospices and Palliative Care’s report on Inequalities in Access to Hospice and Palliative Care – and is based entirely on this evidence-based report and further detailed evidence received since from organisations and professionals working in the sector.
It is therefore deeply regrettable that the Welsh Government is proposing an amendment which deletes almost all of this and I therefore urge them to withdraw their amendment, listen and act.
Approximately 23,000 people in Wales have a palliative care need at any one time, including over 1,000 children, but around 1 in 4 – around 6,000 people - don’t get access to the end of life care they need.
Hospices work in partnership with, and supplement, existing NHS services within local areas.
Last year in Wales:
- 16 charitable hospices provided direct care to over 11,000 people and their families, whilst reaching thousands more through their community engagement and development.
- 290,000 hours were donated by hospice volunteers
- 2150 adults were seen in day hospice and outpatient care
- There were 22,500 overnight stays in inpatient care
- 3,500 people volunteered for local hospices
- 8600 adults seen by community care and hospice at home
- 800 children were helped directly by charitable hospice care
- There were 57,700 home visits by community care and hospice at home
- And 2300 families received bereavement care through hospices
As the Cross Party Group report found, despite some progress in widening “access to hospice and palliative care in Wales, there remains significant unmet need and under-met need”.
A significant proportion of bereavement support is provided by our charitable hospices in Wales.
However, families whose loved one dies in the acute setting after receiving intensive and critical care often miss out on the bereavement care they need through lack of signposting or availability.
The Welsh Government is working with Cardiff University, Marie Curie and the End of Life Care Board to review bereavement services.
Cruse Cymru hopes that the Final Report will include a robust and detailed commitment to a strategic commissioning approach of bereavement services across Wales.
In welcoming the review, Marie Curie states, “ensuring adequate support for families experiencing bereavement is an important part of the process of death and dying, and is a priority for many in the end of life sector”.
2 Wish Upon A Star also welcomes this review and emphasises “the correlation between those organisations funded by Welsh Government, Local Authority or Health Boards who predominantly signpost or refer into organisations - and those who provide bereavement services, but receive little or no funding”.
AND the Cross Party Group Report calls for bereavement to be made a key feature of all relevant policies.
In July 2018, the Minister announced his ‘’ambition for Wales to become the first ‘Compassionate Country’ – a country when we ensure the wellbeing needs of an entire community are a priority – and our motion calls on the Welsh Government to outline how it will achieve this.
Marie Curie identifies many examples of best practice of cities, towns, and states utilising the compassionate community model to ensure a better end of life experience ranging from the “Good Life, Good Death, Good Grief” and the Scottish Partnership for Palliative Care toolkit, encouraging local communities to create support networks, to projects in India and Australia.
Hospices and the voluntary sector are well positioned to mobilise volunteers and support communities to help deliver compassionate communities, with many already delivering programmes that focus on widening ‘participation’ within end-of-life care.
Marie Curie runs a ‘Helper’ scheme in which specially trained volunteers help to provide regular support to those receiving palliative care and their families.
Wrexham based Nightingale House established Compassionate Communities groups and, although they cannot manage the liability further down the line, they state that hospices can contribute if their role is focused on people with palliative care needs and that compassionate communities could therefore develop with them on this basis. They are, for example, taking their day services out to Chirk in Denbighshire and Mold in Flintshire.
Hospices also provide additional services to those provided by the NHS such as support for carers and complementary therapies.
However, despite their importance within wider care service provision, hospices are experiencing a number of challenges which impact on their ability to provide sufficient support services.
These include a lack of statutory Welsh Government funding, resulting in financial pressures which are restricting the ability of hospices to provide services; an out-of-date funding formula leading to a ‘postcode lottery’ of services, and unmet need caused by a lack of specialist palliative care staff.
Wales’ hospices had a combined revenue of £36 million in 2018, and fundraised around £28 million.
Statutory funding has flatlined for many years.
Children’s hospices tell me that although they operate on a “buy one, get seven or eight free” basis, they’ve had flatline statutory funding for ten years.
Government funding of children’s hospices in Wales as a percentage of its charitable expenditure is lower than in England and Scotland.
In Wales, children’s hospices received 12% of their expenditure from government funding last year, compared with 21% in England and 53% in Scotland.
The UK government is doubling children’s hospice funding to £25 million annually by 2023/24 and the Scottish government is providing £30 million over five years to support children’s hospices there.
Wales’ Children’s Hospices are calling for action on the recommendations made by the Cross Party Group Report and asking the Welsh Government to fund a study which examines the demands for Childrens Palliative Care in Wales – and the extent to which this is being met.
Adult Hospices tell me that their statutory funding has not changed for a decade and therefore has been dropping in real terms each year.
Government funding for adults’ hospices as a percentage of expenditure is lower in Wales than any other UK nation.
In Wales, adults’ hospices received 28% of government funding as a percentage of their expenditure in 2017, compared with 33% in England, 34% in Northern Ireland and 38% in Scotland.
Whilst most people express a preference to be cared for in their usual place of residence – at home or in their care home – (55%) of deaths in Wales occur in hospitals. However, many of these may receive some form of support from a hospice.
Given the current pressures in Wales on the number of available hospital beds, hospices provide an opportunity to allow people to access the support they need outside of a hospital environment and according to their own preference. Local Health Boards should therefore develop close working relationships with hospice providers to allow people to access a holistic package of care – designing services together and commissioning smarter to improve lives and reduce pressure on budgets.
The Cross Party Group Report said those with dementia, heart failure and neurological conditions in particular faced a range of barriers to appropriate care, and are less likely to be referred than cancer sufferers - when they should be entitled to care at home, in hospices and care homes as well as hospitals.
The report said people who are aged over 85 or live in a care home can struggle to get the right support - something the former Older People's Commissioner for Wales previously highlighted.
The traditional view of a hospice as an inpatient unit where someone might go for the last few weeks of their life is too narrow, when over 80% of hospice services in Wales are actually delivered out in the community or in people's homes.
The report made 11 recommendations for improvement, including:
- The Welsh government should develop a "robust action plan" to tackle the gaps in palliative care staffing, prioritising district nurses and community paediatric nurses
- Health boards need to ensure there is comprehensive out-of-hours coverage across the whole of Wales
- Hospice and palliative care providers should educate colleagues in health and social care about the range of services available
- And the Funding formula should be based on current population need – which will require clarification on which measurements will be used in determining need, noting that:
-the End of Life Care Board no longer holds the levers and funding has been fully devolved to Health Boards –
-and that the National Clinical Lead for Palliative and End of Life Care told the Cross Party Group that although the Board is strongly committed to finding ways to measure outcomes, experience and the difference made, he was becoming “slightly concerned about people saying that it was hard to measure outcomes when they were not trying”.
Wales has a rapidly ageing population, with the number of people aged 65 and over projected to increase by 36.6% between 2016 and 2041.
Of the 34,000 people who die every year in Wales, 75% need some form of palliative and end of life care.
As a Hospice leader asked me this week, “needs are growing and growing, but no more money is coming in, so at what stage do we start to reduce provision?”
They emphasised that Hospices strength is their independence and the reason the Community supports them - but added that “Health Boards are getting huge and unequal returns from Hospices and therefore have no interest in changing the funding mechanism”.
It is therefore down to the Welsh Government to make this happen.
Effective collaboration between the NHS and Charitable sector is essential if we are to radically improve access to hospice and palliative care for everyone across Wales – with Health Boards asking Hospices how they can help them deliver more.