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Public invited to give views on Liverpool Care Pathway

Family members of relatives who have been placed on the Liverpool Care Pathway are being asked to share their experiences of it with an independent review for the government.

The review, announced in November and to be chaired by crossbench peer Baroness Julia Neuberger, will hear evidence from patients, families and health professionals before reporting to ministers and the NHS Commissioning Board this summer.

The LCP - which recommends in some circumstances clinicians withdraw treatment, food and water from sedated patients in their final days - has come under intense scrutiny recently.

Reports suggest that doctors are establishing “death lists” of patients to be put on the pathway. Articles also claim that hospitals might be employing the method to cut costs and save bed spaces.

But clinicians have argued that the pathway has “transformed” end-of-life care, saying it can offer peaceful, pain-free deaths when used properly.

Care and support minister Norman Lamb said: “Experts agree the LCP, if applied properly, can help patients die a dignified and pain-free death.

“But, as we have seen, there have been too many unacceptable cases where patients or their families were ignored or not properly involved in decisions. There have also been reports of food and fluids being denied to people inappropriately.

“It is vital for relatives to have complete confidence in the care that their loved ones are receiving. This is why we want to hear from people with experience of the LCP, where it met the high standards expected and where things went wrong.”

He added: “I urge people to get in touch to share their experiences, so we can ensure that lessons are learned and things put right.”

Claire Henry, director of the National End of Life Care Programme, said: “I am pleased that Baroness Neuberger is giving everyone, from members of the public to health and social care staff, the opportunity to express their thoughts and share their experiences of the Liverpool Care Pathway.

“This review is an opportunity not to be missed for individuals and organisations and I would encourage as many as possible to contribute their experiences, whether good or bad.”

Dr Jane Collins, chief executive of Marie Curie Cancer Care, said: “The Liverpool Care Pathway was developed to spread the hospice model of end-of-life care into hospitals and other healthcare settings but we know from the stories in the media, that not everyone who is terminally ill and dying is getting the high quality care they need  and many are being badly let down.

“We look forward to providing any support and information we can to Baroness Neuberger and the inquiry panel and would urge patients and families with both positive and negative experiences of the Liverpool Care Pathway to come forward and take part.”

Baroness Neuberger has also announced full details of the panel of independent experts she has appointed to run the review:

  • Sarah Waller – a former trust chief nurse and director of human resources: currently leads The King’s Fund’s Enhancing the Healing Environment Programme
  • Lord Khalid Hameed – chair of the Alpha Hospital Group; chair and CEO of the London International Hospital
  • Denise Charlesworth-Smith – has experience of the Liverpool Care Pathway when her father was placed on it
  • Tony Bonser – fund-raiser for Macmillan Cancer Support; North Western Champion for the Dying Matters Consortium
  • The Rt Revd Richard Harries – former Bishop of Oxford
  • Lord Charles Guthrie – chancellor of Liverpool Hope University; chair of both the Hospital of St John and St Elizabeth and St Johns Hospice.
  • Professor Emily Jackson – dean of law at the London School of Economics
  • Dr Dennis Cox – Royal College of General Practitioners
  • David Aaronovitch – columnist for The Times

 

Readers' comments (55)

  • michael stone

    But, as we have seen, there have been too many unacceptable cases where patients or their families were ignored or not properly involved in decisions.

    ___________________________

    Depending on the decision, not getting permission from the patient could well be an assault in some situations - and in the more complex circumstance of mentally-incapable patients, not correctly applying section 4 of the Mental Capacity Act, which does seem to require quite wide lay involvement usually, in my view is potentially legally very dubious.

    I'm pleased this list has appeared, becauser I was wondering who the review's members were going to be (and I sent a submission to the review a few weeks ago, as it happens).

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  • How do people submit a view - does it tell us in there somewhere, because I missed it if it does ?

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  • Poor choice of the people on the panel! As many journalists as palliative care nurses!

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  • michael stone

    redpaddys12 | 19-Feb-2013 3:43 pm

    Red, a major aim of the review, is to work out how the public perceives the LCP - why the press keeps having a go, and why there are so many 'angered bereaved relatives' who complain about their own experience of how the LCP was used re one of their loved ones.

    You need more than clinicians, to get to the bottom of that.

    Anyway, I have conceptual objections to the LCP being 'regarded as a thing' - and I've sent that, with other comments, to the review's secretariat, weeks ago.

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  • http://www.dh.gov.uk/health/2013/01/review-lcp/

    Gives the email address to respond to and info about public meetings.

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  • michael stone

    The Nobody | 19-Feb-2013 9:18 pm

    Thank you Nobody - always good to know how you respond to these things !

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  • michael stone

    I have just looked at the link, and the contact address has been added to the page unless I missed the obvious when I originally looked at a week or two ago - the rest of the text, and its description of the objectives and terms of reference seem very familiar.

    I would encourage people to send in their opinions about the LCP, because I happen to know that the DH does have a GENUINE desire to better understand what professionals believe the LCP is, whether guidance about it is good enough, why so many relatives are distressed by experiences of the LCP, etc.

    But I'm not posting the contact address, because it makes sense for people to read the page it is on which the Nobody pointed at:

    http://www.dh.gov.uk/health/2013/01/review-lcp/

    first. It isn't very long.

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  • I think we have complicated things by giving dying the title End Of LIfe.It's surely a time in a persons life that could do without any confusion.and the words death and dying should not be removed.We need more openness,more human responses,more honesty.

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  • Julie Laidlaw | 20-Feb-2013 4:41 pm

    I agree with you. the whole normal, and natural process of dying seems to have become totally embroiled in a mesh of legal red tape causing doubt, confusion, stress and even feelings of guilt for all of those involved and at a time when families should be allowed the space and peace to grieve with only the support that they may need.

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  • why can't people accept death anymore, it is going to happen to all of us.

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