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Monitoring is vital for government’s end of life care strategy to be successful

BMJ 2008; 337 doi: https://doi.org/10.1136/bmj.a2999 (Published 16 December 2008) Cite this as: BMJ 2008;337:a2999
  1. Lisa Hitchen
  1. 1London

    Monitoring will be crucial if the government’s strategy for care at the end of life is to be implemented fully, said experts at a conference in London on Tuesday 9 December on palliative and end of life care.

    The 10 year strategy, launched in July 2008, calls on all NHS trusts in England to provide new services, change current services, and improve training and standards to raise the quality of care of people around the time of their deaths (BMJ 2008;337:a871, 17 Jul, doi:10.1136/bmj.a871).

    In a survey by the charity Marie Curie Cancer Care two thirds of respondents said they want to die at home (www.mariecurie.org.uk/aboutus/news/news_archive/news_archive_2008/patients_survey_care.htm), but around 58% of people still end their lives in hospitals. The strategy aims to increase the number of people who are at their chosen location as they approach the end of their lives.

    Claire Henry, national programme director for the NHS’s end of life care strategy, reminded delegates at the conference, organised by the Westminster Health Forum, that funding attached to the strategy would be in primary care trusts’ budgets for the next two years.

    Overall, primary care trusts are being given an extra £286m (€320m; $416m) over two years to improve end of life care services. But delegates expressed concern that this money would be diverted elsewhere as primary care trusts’ commissioners made alternative decisions about spending.

    One of those making a presentation at the conference, Karen Taylor, director of health value for money studies at the National Audit Office, echoed the concerns.

    She said that her organisation’s recent report End of Life Care could not include details on specific spending on palliative care, as trusts would not stipulate what they spent on it (BMJ 2008;337:a2750, 26 Nov, doi:10.1136/bmj.a2750).

    “The current way the NHS is managed is through PCT [primary care trust] commissioning,” Ms Taylor said, “but we don’t feel it can be just left to the PCTs. There has to be guidance, support, and structure . . . if this [strategy] is to be implemented.

    Ms Henry replied that the Department of Health would bring in “some form of monitoring for the next financial year.”

    Some progress has already been made on implementation, said Keri Thomas, national clinical lead for the NHS’s gold standards framework, which aims to enable a “gold standard” of care for people nearing the end of their life (www.goldstandardsframework.nhs.uk).

    The framework is one of three evidence based approaches that form the backbone of the NHS’s strategy on end of life care. Data for 2005-6 from the quality and outcomes framework (QOF), which sets clinical priorities for GPs to work towards, show that 90% of general practices had a register to show they were using the gold standards framework for relevant patients.

    Ms Thomas said, “It isn’t perfect, and it isn’t working everywhere, but it means that identifying patients and putting them on a register and having a meeting to plan them is becoming mainstream, so that is really important.”

    Two independent surveys, by the Universities of Nottingham and Sheffield, have shown that 62% of practices say they are using the framework to some degree, she added. The centre plans to revive the framework for primary care in June 2009 by developing consistency among practices and patients, involving patients with diseases other than cancer, and spreading use of the framework to practices that have not yet adopted it.

    Two surveys by the University of Birmingham looking at care homes have shown a 12% reduction in the number of crisis admissions to hospital among those homes that have implemented the framework and an 8% reduction in the number of deaths in hospital.

    Training was an important issue that must be tackled, said Carole Mula, a Macmillan nurse consultant in palliative care at the Christie Hospital NHS Foundation Trust in Manchester. She called for basic training in end of life skills to be made mandatory for all clinical staff as a way to make the NHS’s strategy more achievable.

    Cancer was the focus of many palliative care specialists, but this has to change, she said, as more patients with other life limiting illnesses such as heart disease and lung cancer need end of life support.

    “Maybe we need to be developing palliative care expertise in other disease groups,” suggested Ms Mula.

    Notes

    Cite this as: BMJ 2008;337:a2999

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