Government Must Act Now To Improve Services For The Dying

Help the Hospices, the national charity for the hospice movement has published its report on end of life care and related recommendations for implementing the Government’s proposed ‘End of Life Care Strategy’ for England.

The charity finds that there is currently inadequate support for people with terminal illnesses and their families, with too many people suffering needlessly uncomfortable and distressing deaths.

The report identifies major flaws in planning and the information used for commissioning and reporting on end of life care services. These include few people achieving choice about where they die, failings in the training of healthcare professionals, poor service integration and inadequate and under-protected funding – areas which the implementation of the strategy must address.

David Praill, chief executive of Help the Hospices, says: “The End of Life Care Strategy must and can deliver real change. Relief from pain and symptoms, dignity, care and emotional and practical support as we approach the end of life should be basic rights. Too many people are being denied these things and we are delighted that the Government is addressing this.  

“The Strategy will also hopefully mean that services will have much needed clarity on how and when the Government will deliver on its Manifesto commitment to doubling investment in palliative care services.”  

The charity says that if the End of Life Care Strategy is to be successful it must:

• Enable investment in the local services that will deliver improvements to patient care. The report says that the End of Life Care Strategy must provide detailed information on how the promised doubling in end of life care funding will operate in practice and what funds will be available when.
• Improve the commissioning of palliative and end of life care services so that commissioning meets needs better, is fair and transparent and in line with the National Compact agreement between the State and voluntary sector.
• Detailed recommendations include improving commissioner knowledge about end of life care, identifying and ring-fencing NHS funds for end of life care and mandatory joint commissioning of care services in end of life care.
• Provide incentives for services to improve and for the strategy to be delivered. The charity calls for measurement against clear outcomes as well as a range of entitlements for patients and their families including a named co-ordinator from point of diagnosis, an advanced care plan, and the opportunity to express preferences about their care. The recommendations include a requirement for Primary Care Trusts (PCTs) to provide timely and longer term contracts with clear payment information for service providers.  
• Improve the knowledge and expertise of staff in all care settings – from hospitals to care homes. Help the Hospices recommends that palliative care becomes a core part of training, including placements in hospices, for all healthcare professionals and, if needed, regulation to ensure that all staff involved in end of life care have the necessary skills.
• Set and enforce quality standards for care in every setting. The charity believes that new, clear and high standards on end of life care are required and that these should apply to all settings in which people receive care and support towards the end of life.
• Provide care earlier than the last few weeks of life and better support after death for family and carers. The report calls for earlier access to palliative care for people with life threatening conditions and asks that the Strategy also addresses bereavement support.
• Ensure that the potential and expertise of hospices as pioneers of high quality palliative care is central to the delivery of the Strategy. The charity believes that the future of hospices, acknowledged universally as representing the gold standard for end of life care, will be under threat unless the Government ensures a fairer funding system that removes the current need for hospices to use public donations for their charitable work to subsidise NHS care by up to £200 million annually.
• Deliver better co-ordination and stronger local partnerships for palliative and end of life care. Related recommendations include 24 hour services, access to hospice-led advice, and greater service consistency across the country. The charity recommends that the Strategy should take a flexible approach to appropriate local service models. The report calls for PCTs to work with other organisations, including social care and voluntary sector services, to analyse local needs ahead of defining services and levels of local service provision.
• Promote greater public awareness of end of life care issues.

David Praill says: “The End of Life Care Strategy will be an ineffectual wish if the issues we have raised are not addressed through its implementation and supported by enforcement and clarity on what additional investment we will see, who will get it and when we will see it. The Strategy is important, it will affect everyone who lives in England at some point, and we hope our report and recommendations help policy makers to get it right and make it the success that it desperately needs to be.”