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"Blueprint" published on how greater choice at end of life can be achieved

26 February 2015

A report published today calls for a new ‘national choice offer in end of life care’ to be established by 2020, backed up by an additional £130 million for health and social care services.

The report has been published by the Choice in End of Life Care Review Board, set up by health minister Rt Hon Norman Lamb MP in July 2014 and chaired by Claire Henry, chief executive of the National Council for Palliative Care.

In it's report, the Board calls for there to be a new right in the NHS Constitution for everyone to be offered choice in their end of life care, and for these choices and preferences to be recorded in their own personal care plan. 

In addition to the 'national choice offer', other key recommendations include:

  • establishing 24/7 community end of life care across England by 2019
  • a named senior clinician and care coordinator for everyone in need of end of life care 
  • a clear government policy to make access to social care for people at the end of life fast and free
  • more honest and open communication about end of life issues, with better support for health and care professionals and increased awareness raising among the public
  • greater joint working between palliative care specialists and other clinical staff to identify people who may need end of life care as early as possible
  • closer partnerships between NHS and social care organisations and the voluntary sector to support hospices in providing the services required to meet people’s choices.

The review group, which included people with personal experience of end of life care services and experts from across health and care organisations, was tasked by government to consider how the quality and experience of care for adults at the end of life and those close to them could be improved by expanding choice.

As part of its review, the board held a public engagement exercise, and heard how people want a choice over their place of care and death, as well as other aspects of their care, such as pain control and the involvement of family and those close to them.

Claire Henry explained: "There is a real opportunity to transform end of life care, so that people get control back over their lives and can exercise choice on the things that are important to them, including where they are cared for.

"That’s why we have recommended that a ‘national choice offer’ is established, setting out what should be offered to each individual who needs end of life care.

"This needs to be supported by investment in social care and NHS services in the next spending review, alongside a new right in the NHS Constitution for everyone to be offered choice in end of life care and have these preferences recorded and held in their individual care plan."

Government response

Welcoming the report in a written ministerial statement, Rt Hon Norman Lamb MP said: "The government will work with organisations in the health and care system to consider this advice and enable a full response later this year.

"In the meantime, I can say that we fully support the review’s vision that every person should receive care in line with their choices and preferences, and we urge local health and care organisations to work together to ensure that this is achieved for as many people as possible.

"In particular, we recognise that interoperable electronic health records play a central role in ensuring that people’s preferences and choices are recorded and shared with all involved in their care. Examples from across the country have shown that where these systems exist they can deliver real benefits to people at the end of life and form an important part of the culture change needed to deliver choice and person-centred care.

"To help this happen, the government accepts the review’s advice that each person approaching the end of life should have a fully interoperable electronic health record, and should be able to access and add to their own records. This is in line with the ambition set out for all patients the NHS Five Year Forward View."

Earlier this week, Norman Lamb also voiced his support for Sue Ryder's 'Dying doesn't work 9 to 5' campaign. During Wednesday's Parliamentary Questions in the House of Commons, the health minister commented how local examples had shown that 24 hour palliative care support reduced A&E admissions and that he was happy to work with Sue Ryder and others to tackle this issue and expand the provision of 24 hours support.

Sector response

Today's report and its recommendations have been widely welcomed by the hospice and palliative care sector.

Marie Curie strongly supports the recommendation that by 2020 everyone who is affected by terminal illness is offered the choice about where and how they are cared for. 

Phil McCarvill, head of policy and public affairs in England for Marie Curie, said: "The impact a lack of choice can have goes much further than just the person living with a terminal illness, taking away the ability to choose where people die can have a serious effect on bereaved families and carers causing issues with guilt and grief. We need to ensure that support is in place so less money is spent on expensive hospital care for people who often do not want or need it. 

"If, by 2020, we want to ensure that choice about care is a reality for all people affected by terminal illness, the next Parliament needs to rethink the way care and support is provided to terminally ill people and their families. We need to ensure money is invested in the right way, ensuring those affected by terminal illness are supported to live well and stay out of hospital for as long as possible. We know that this is not only cost-effective for the NHS but allows people to have greater choice and flexibility around their care."

Hospice UK is calling all political parties to reflect on the recommendations and to make sure that improving end of life care is a priority for the next government.

Jonathan Ellis, director of policy and advocacy at Hospice UK, said: "Good end of life care is about much more than where someone is cared for. It's about helping people feel informed and in control, and recognising that needs and preferences are likely to change over time. We need services that are flexible and adaptable to people's needs, and the sensitivities of those close to them.

"As the report highlights, the voluntary sector is a major provider and funder of end of life care through the hospice movement. Hospice UK and other end of life care organisations have also come together to help shape future care by issuing a joint briefing for politicians ahead of the general election.

"But high quality and consistent care for people at the end of their life can not come from hospice and palliative care services alone. To meet the growing need within our communities, we need a new partnership between charities, the NHS and social care, and additional investment to make choice a reality for all. 

"The report sets out a road map of action that should be taken to give everyone more control over their care at the end of life. We need all political parties to reflect on the recommendations and to make sure that improving end of life care is a priority for the next government, regardless of the outcome of the general election."

'What’s important to me. A Review of Choice in End of Life Care' can be downloaded from the Department of Health website.

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