English Health and Wellbeing Boards neglect needs of dying people

Sep 12, 2014

Only around four in 10 (43%) Health and Wellbeing Boards in England include the needs of dying people in their key strategies that shape health and social care services according to research by Help the Hospices and the National Council for Palliative Care (NCPC).

The charities reviewed the Joint Health and Wellbeing Strategies (JHWSs) of 152 Health and Wellbeing Boards (HWBs) in England to assess whether they considered the needs of people approaching the end of life.

Nearly a quarter (24%) of HWBs did not make any reference at all to people approaching the end of life or their care needs in their strategies. Just over a quarter (26%) only made an indirect reference to dying people and their needs, for example in the wider context of care for older people only. Seven per cent of boards failed to either publish a strategy at all or make one publicly available.

The charities expressed concern about the findings as the strategies present an opportunity to address current issues relating to end of life care, especially with regard to quality, availability and coordination of care.

Currently, 92,000 people die each year without the support they need. Without action, this number could increase sharply as the country’s population rapidly ages over the next 30 years, with more people living for longer, often with complex health conditions.

In light of the research findings, Help the Hospices and the National Council for Palliative Care are calling on all Health and Wellbeing Boards to take the following actions:

  • Explicitly consider and include the needs of dying people in their JHWSs and encourage better integration of health and social care services
  • Use data produced by Public Health England on end of life care needs to inform their JHWSs
  • Work with hospice and palliative care providers, as well as patient and community groups to co-produce JHWSs, ensuring patients and the public have a stronger voice in service design and delivery
  • Become more transparent and accountable to local stakeholders by making their JHWSs publicly available

Commenting on the findings, Robert Melnitschuk, Policy and Advocacy Manager at Help the Hospices, said:

"It is disappointing that the needs of people approaching the end of life, their families and carers are still being ignored by so many Health and Wellbeing Boards, which were established to improve services and outcomes for people locally.

"Health and Wellbeing Boards need to respond to current high levels of unmet need for end of life care and also prepare for increasing demand for these services as our population ages rapidly. We hope that in future HWBs use their influence to drive positive change on service planning and provision in their local communities, so that people approaching the end of life have access to the support they need."

Simon Chapman, Director of Public and Parliamentary Engagement, at the National Council for Palliative Care added:

"It’s encouraging that a growing number of Health and Wellbeing Boards have given consideration in their strategies to the needs of dying people, but this needs to be repeated across the country as far too many haven’t. Health and Wellbeing Boards have a key role in shaping the services available to people at the end of their life. "This report must be a wakeup call to those Boards who have failed to recognise that understanding and meeting the needs of the people who are dying in their community, and their carers, must be part of their core business."

Notes to Editor

  • According to the report by Help the Hospices the following HWBs do not reference people approaching the end of life or their care needs in their strategies: Brent, Buckinghamshire, Camden, City of London, Cornwall, Darlington, Dudley, Enfield, Gloucestershire, Hackney, Halton, Hammersmith and Fulham, Isles of Scilly, Kensington and Chelsea, Kirklees, Lambeth, Lewisham, Liverpool, Middlesbrough, Newcastle, North East Lincolnshire, North Lincolnshire, Oxfordshire, Peterborough, Reading, Redcar and Cleveland, Rochdale, Rotherham, North Somerset, Sheffield, Slough, Sutton, Telford and Wrekin, Wandsworth, West Lindsey, West Sussex.
  • Help the Hospices conducted its research in August 2014. A copy of the full report is available on our website. The report’s findings are based on methodology used by the National Council for Palliative Care (NCPC) in its report published in 2012. http://bit.ly/WS9GPE
  • NCPC offers resources to support HWBs on service strategy for end of life care, including information and training, much of which is either free or low-cost.
  • Health and Wellbeing Boards were established under the Health and Social Care Act 2012. They are aimed at encouraging health and social care leaders to work together to improve the health and wellbeing of their local communities, to integrate services better and match them more closely to the needs of local people, as well as helping to reduce health inequalities.
  • HWBs include representatives from Clinical Commissioning groups (CCGs), the local council and local Healthwatch group. They produce Joint Health and Wellbeing Strategies (JHWSs) which form the basis of commissioning plans for health and social care in each local area.
  • The number of people aged 85 and over in the UK is expected to double in the next 20 years. The number of deaths in the UK is expected to rise by 17 per cent by 2030.
  • Help the Hospices is the national charity for hospice care which supports and champions the work of 223 hospices across the country.
  • Get all the latest news from the hospice and palliative care sector, as well as patient stories, on ehospice UK at: www.ehospice.com/uk This service is managed by Help the Hospices. You can also follow all the latest news on Twitter at @ehospicenews
  • The National Council for Palliative Care is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland. It also leads the Dying Matters Coalition (www.dyingmatters.org) which aims to help transform public attitudes towards dying, death and bereavement in England and Wales.

Media enquiries

Please contact Suzanne Stevenson on 020 7520 8296 or by email at s.stevenson@hospiceuk.org For out of hours media enquiries please call 07881 940 318.

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