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New alliance to lead drawing up of end-of-life care guidance

The government is expected to announce a new coalition on end-of-life care in response to the scrapping of the Liverpool Care Pathway (LCP).

The Leadership Alliance for the Care of Dying People will bring together health and social care groups with the aim of improving care for people at the end of their lives.

It comes after it was announced last month that the LCP will be axed, following an independent review sparked by increasing criticism of the pathway and how it was being used in the national media.

The announcement of a new coalition is expected to be made by NHS England.

In a statement, NHS England said the independent review had called for a coalition “to lead the way in creating and delivering the knowledge base, the education, training and skills and the long-term commitment needed to make high quality care for dying patients a reality, not just an ambition”.

The new alliance will be chaired by Dr Bee Wee, national clinical director for end of life care at NHS England.

The Care Quality Commission, the Department of Health, the National Institute for Health and Care Excellence, and the Nursing and Midwifery Council are among those who have signed up to the alliance.

The alliance will provide guidance on what needs to occur in place of the LCP and will work with end-of-life healthcare professionals, patients and families on what good care means.

It will also consider how to implement recommendations around the accountability and responsibility of individual clinicians, out-of-hours decisions, nutrition and hydration and communication with the patient and their relatives or carers.

The independent review concluded doctors had used the LCP - which recommends the withdrawal of treatment, food and water from some sedated patients in their final hours or days - “as an excuse for poor-quality care”.

The review panel, chaired by crossbench peer Baroness Julia Neuberger, said they were “shocked” and “upset” at some of the “distressing” cases of appalling care they had heard about.

Patients were left on the pathway for weeks without any review and some patients’ families claimed they were shouted at by nursing staff for giving their relatives water.

“The same stories keep emerging of poor care, appalling communications and of a lack of attention or compassion,” Baroness Neuberger said as she published her review.

“Among the worst stories were of people on the Liverpool Care Pathway for days going into weeks without communication or review or discussion.

“And also desperate stories of desperate people who are longing for a drink of water who were, through misunderstanding of the Liverpool Care Pathway and poor care, denied a drink,” she said.

“Stories of nurses shouting at families who give a patient a drink were frequent as were stories of people who were just left to get on with it with no regular observations or review,” she added.

In response, care and support minister Norman Lamb ordered all NHS hospitals to undertake reviews of care given to dying patients.

He also ordered hospital bosses to ensure that in the future every patient has a named senior clinician responsible for their care in their final hours and days of life.

Financial incentives to put people on the regime would also be scrapped, he added.

John Hughes, medical director at Sue Ryder, said: “We welcome the Leadership Alliance for the Care of Dying People, which was set up in response to the independent review of the Liverpool Care Pathway.  

“The range of organisations included in the group from across health and social care highlights the importance of the issue, as well as the need for a united front to work towards improving the care for people facing the end of their lives.”

He added: “We’re keen to work with the LACDP, and are supporting a series of workshops to elicit the views from frontline palliative care professionals on what good end of care looks like regardless of the care setting.”  

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Readers' comments (15)

  • Right, before I say the serious point I've just got to mention the fact that as soon as the Daily Fail hear that the Chair is called Bee Wee this plan is doomed to fail.

    On a more serious point though, how is this going to be any different from the LCP? Nurses are still understaffed, training will probably be ad hoc at best and learning on the job at worst. The same problems will probably be highlighted under this heading as it was under LCP.

    My father was on the LCP in January and I fought for him to be placed on it as the doctor did not like it. It was implemented appropriately, the care he received was brilliant and they followed the care plan well. Just because the Daily Fail thinks that the NHS should be privatised these new plans are invented, but using the same old methods. Why are we ruled by a second class newspaper with shoddy journalism?

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  • I submitted to Baroness Neuberger's inquiry that The LCP was probably OK when used within Hospice settings where the majority of patients are terminally ill? The LCP predominantly hit the headlines after it was "rolled out" on to acute hospital wards where it had a far greater risk of hastening deaths prematurely.
    I substantiate the above now that it is proven that my 63 years young wife was placed on the LCP when lung nodules were mistakenly diagnosed by an MDT for lung cancer as opposed to treatable pulmonary emboli.

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  • I submitted to Baroness Neuberger's inquiry that The LCP was probably OK when used within Hospice settings where the majority of patients are terminally ill? The LCP predominantly hit the headlines after it was "rolled out" on to acute hospital wards where it had a far greater risk of hastening deaths prematurely.
    I substantiate the above now that it is proven that my 63 years young wife was placed on the LCP when lung nodules were mistakenly diagnosed by an MDT for lung cancer as opposed to treatable pulmonary emboli.

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  • What's it going to be replaced with?
    When will the training start?
    How many new EoL specialist staff are going to be trained up and employed?
    What extra support will be made available to staff of all disciplines?
    What extra support will be made available to patients, carers and relatives?
    How much money will be spent on extra EoL beds/hospices/care-homes/care at home?

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  • michael stone

    I sent an e-mail to Hunt last week, asking him who now has an 'all-over perspective' on end-of-life care in the new NHS set-up: it used to be Tessa Ing at the DH, whose job title of Head of End-of-Life Care gave her some leeway to think about ALL aspects of EoL care. I'm still waiting for his reply - presumably the reply will say it is Dr Bee Wee, but I await the reply with interest. In particular, I await the DH's explanation of 'who would I e-mail with issues ?' which is effectively a question I posed.

    Anonymous | 31-Aug-2013 11:50 am

    What the LCP review said was needed, as I recall, was 'A national Conversation about Dying' - first get everyone to talk to each other to identify issues (which can seem very different from different perspectives), then work out how best to solve them. There are lots of issue to work on.

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  • anon 4.31 - ?the majority of patients are terminally ill - as opposed to what? aren't all patients in hospices terminally ill?

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  • Hi Mike
    It depends what your question is..... Dr Bee Wee is the lead clinician, but here are some other names, from an event planned for November Looks like Anita Hayes will be a key person, as well as the lead nurses for GSF.

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  • michael stone

    The Nobody | 1-Sep-2013 0:33 am

    Hi Noboy,

    What I'm after is someone has a general grasp of all of the bits of EoL, including certification/verification (Tessa's job title included certification of death) and will actually answer e-mails ! Rather more interactively than 'we note your comments'. as lady neuberger noted, everyoen needs to be talking to each other, somehow.

    My actual e-mail to Hunt said this:

    Dear Mr Hunt,

    This is a combination of a question, and (perhaps) a comment.

    Prior to the spring reorganisation of the NHS structure in England, the DH had in post a Civil Servant whose job title was ‘Head of End of Life Care’. This person’s title, allowed her to legitimately ‘think about all of the EoL issues which came to her attention’.
    You removed that post, April 1st.

    As the thrust of most recent reports into NHS failings, has invariably included ‘the NHS does not listen to laymen properly’, and as there are still many very significant issues around end-of-life (some of which are by no means obvious to clinicians, because of 'perspective issues'), with whom would I now raise and discuss these by e-mail, as I previously found possible with Tessa Ing (who was the post holder) ?

    I’m not sure who now ‘thinks permanently about all EoL issues in the round’ and where exactly that ‘thinking’ is centralised, if anywhere – my impression is that the situation is now that ‘working topics/themes are looked at on a one-by-one basis’ by people who are often medics (and who might also be continuing to perform their medical work).

    If I’m right, there is now nobody, who has got the same sort of ‘overall handle and overall perspective’ on the entire ‘behaviour set around end-of-life’ that Tessa had – something I don’t see as an improvement in terms of ‘pushing EoLC forwards’,

    Regards, Mike Stone

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  • michael stone

    The Nobody | 1-Sep-2013 0:33 am

    Should have been 'Hi Nobody' ! Anita Hayes rings a bell - but not a bell of 'I get e-mail exchanges with her' type.

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  • I am sure Mr. Hunt is far too busy and will consign it to the Trolling recycle bin!

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  • michael stone

    Anonymous | 30-Aug-2013 12:53 pm

    Where does this idea that the LCP was created for use in hospices and not in acute hospitals, come from ? The EXPERTISE underpinning the development of the LCP clearly came from hospices – but the very start of the Foreword to the Neuberger Review of the LCP tells us:

    ‘In Britain, although most people would prefer to die in their own home, around half end their days in hospital. The proportion dying at home will increase, but because of a rise in the death rate, the actual numbers dying in hospital will also increase. The Liverpool Care Pathway for the Dying Patient (LCP) is an approach to care, including a complex set of interventions, that resulted from a desire to replicate within the hospital sector the standard of care for the dying found in many hospices. It was in part a response to the belief of clinicians and others that care for the dying in the acute sector was deficient.’

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  • George Kuchanny

    michael stone | 2-Sep-2013 9:07 am

    So? What is your point? Are you arguing for or against the LCP as a document, an academic point. Or is your stance largely neutral, if so do you concede the fact that it was not implemented in spirit, detail or broad interpretation at Stafford? What it clearly did not achieve was the standard of care. Why the failure occured has already been argued.

    Patient Centred Care.

    Three words unfortunately sneered at by many. Rather like the following two.

    Informed Consent.

    Or how about the following paragraph. The word tacit is important. It defines, in one word, the relationship between the predominant culture of society and the culture within organisations supported entirely by the public purse like the NHS or the Police Force. I draw your attention to the word tacit because it is very important.

    Patient Centred Care foremost or do we encourage some who work in a medical capacity to use social engineering
    considerations on our behalf with tacit approval.

    Hm... Needs an article to expand the notions contained in that sentence I think.

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  • michael stone

    'George Kuchanny | 6-Sep-2013 4:04 am

    michael stone | 2-Sep-2013 9:07 am

    So? What is your point? Are you arguing for or against the LCP as a document, an academic point.'

    I'm arguing, that there should not be any need 'for the LCP' - what we need is a 'list of clinically tested and effective treatments (including palliations) which can be OFFERED during EoL situations', and 'proper guidance about who makes what decisions about the provision of treatment, about how those decisions are reached, and about what happens in cases of disagreement about proposed treatments/actions'.

    As soon as you start to give something a name within the NHS - 'LCP' for example - some (I'm NOT saying the NHS is full of idiots - just that there seem to be too many around, judging by various reports) morons will start to think of EoL 'care' as being 'something you shoehorn every patient into in some sort of generic way', instead of in an ongoing way thinking, for every patient, 'Would this SPECIFIC AND INDIVIDUAL patient want this to be happening or not ?'. The NHS is process-obsessed: I'd prefer better training, more thinking, and less 'following tick-box guidance like a machine', IF I were convinced that the trainign were affordable and would be effective (a BIG 'if', as it happens). And a MUCH GREATER emphasis on 'multi-perspective thinking': not just letting clinicians come up with answers, but having everyone, lay and professional, 'designing what works for us all as the most balanced compromise'.

    I've done Patient Centred before: a totally useless term, because when Enola Gay dropped its A-bomb on Hiroshima, that was 'Hiroshima centred': when a Japanese sniper shot and killed my uncle Fred in Burma, that was 'Fred centred': when the Luftwaffe flattened Coventry city centre one night in November 1940, that was 'Coventry centred'. But none of those events 'looked good to the 'centred' element', did they !

    Your 'social engineering' comment loses me somewhat - you surely are not implying that the NHS cannot apply (with transparent discussion of) some 'systemic restraints on offered treatment to individuals, for the benefit of patients and potential patients in their entirety' are you ? And if you are not suggesting that - in other words, if you accept that offering unlimited care would rapidly bankrupt the NHS - it isn't obvious to me what you are getting at ?

    Going back to stafford, I don't know how good or bad Stafford was with the LCP - stafford was certainly bad with many things, and the Neuberger review has made it clear that many places were using 'the LCP' incorrectly and wrongly.

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  • michael stone

    This might – probably won’t – make my fundamental position re the LCP, whatever ‘plan’ replaces it, and any other ‘EoL Care guidance’ clearer for George and everybody else who doesn't currently understand it.

    When I submitted something to the LCP review, I included a quote form the information page about the review’s purpose:

    ‘The LCP is clear about the importance of communication. It is designed to
    support professionals, who may not be palliative care specialists, to provide
    personalised, hospice style-care. It encourages staff to anticipate the
    treatment an individual may need, and to be ready to provide it swiftly, but it
    does not dictate the treatment anyone should receive. The issue is therefore
    not about the merits of the LCP itself, but about how it is being used.’

    I then made the following comment, which in essence explains why I dislike ‘pathways’, ‘plans’ and many other ‘things’:

    I think calling ‘the overall care’ ‘being on the Liverpool Care Pathway’ is
    conceptually confusing – all people are doing, is changing behaviour when
    the patient’s situation changes (from being cured, to dying, in essence).
    There are clinically-proven methods of providing palliation, but these need not
    only be involved in the care of the terminally ill: likewise, a patient is entitled to refuse some active interventions but accept others (it is reasonable in some
    situations, to accept all types of active intervention except for a blanket refusal
    of attempted CPR). The widespread confusion/conflation between clinical
    effectiveness, and a patient’s right to refuse interventions (a right which is
    ongoing and applies to each individual intervention), is probably one reason
    why the communication your webpage stresses as being so important, does
    not always occur – if every aspect of ‘the LCP’ were thought of as being a
    separate ‘intervention’, and it were understood that these individual
    interventions required patient consent, then surely clinicians would be more-or-less forced to talk to patients (or for mentally-incapable patients, ‘relatives’) ?

    That is basically my point – ongoing clinical interventions, require ongoing discussions and ongoing consent (not the ‘clinical technique’ of the intervention if the intervention is accepted by the patient, but the initial decisions about whether or not the treatment(s) are to be applied).

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  • michael stone

    I just got a reply to my question to Hunt: as I published my question here (michael stone | 1-Sep-2013 1:46 pm), you can see that I wanted an e-mail address and didn’t get one. That annoys me, but as it happens I already had Dr Wee’s e-mail address – and I’ll be sending this reply to her, as the final sentence is helpful.

    Dear Mr Stone,

    Thank you for your email of 15 August to Jeremy Hunt about the Department of Health’s end-of-life care head official post. I have been asked to reply on Mr Hunt’s behalf.

    As you are aware, as of 1 April, NHS England has been responsible for improving end-of-life care services. Therefore, I would advise that you address any further enquiries to NHS England directly and, in particular, to Dr Bee Wee, the National Clinical Director for End-of-Life Care. Dr Wee plays a major role in the development of clinically-led, patient-focused care in end-of-life care nationally. The role of National Clinical Director includes having an overall view on end-of-life care and all the issues and challenges faced by the clinicians involved in its delivery, as well as patients and families who come into contact with end-of-life care services.

    Dr Wee’s contact details are:

    Dr Bee Wee
    National Clinical Director for End-of-Life Care
    NHS England
    PO Box 16738
    B97 9PT

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