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Terminally ill patients 'need 24/7 support', says charity


Terminally ill people and their families are being left “scared, alone and desperate for help” because most areas in England do not provide round-the-clock care for those dying at home, a charity has claimed.

Research by the Sue Ryder hospice and neurological care charity found 92% of areas in England do not have 24-hour provision, including out-of-hours telephone lines to expert nurses for carers and patients.

“People who are dying, their carers and their families should be able to access the care they want, when they want”

Heidi Travis

Only half of those people who would choose to die at home are able to do so because of the shortage of overnight help, the charity said.

Launching its Dying Doesn’t Work 9 to 5 campaign, chief executive Heidi Travis said the current situation is unacceptable.

“We at Sue Ryder firmly believe that people who are dying, their carers and their families should be able to access the care they want, when they want,” she said.

Sue Ryder

Heidi Travis

“Unfortunately many areas of the country simply don’t have the services in place to make this ambition a reality,” she added.

“Yet services like our local Partnership for Excellence in Palliative Support (PEPS), which is built around giving patients a single point of contact to help ensure a co-ordinated service, has proven that this is possible to achieve,” said Ms Travis.

A survey of 2,000 adults in England by Populus for the charity found 82% of people expect support and advice to be available round-the-clock, but three-quarters admitted their biggest fear about death is that relatives will have to look after them without outside support.

The charity, which said the situation will only get worse as strains on the health service increase, has launched a petition to the Health Secretary Jeremy Hunt to make 24/7 support available for those who are dying.

The charity’s questioning of clinical commissioning groups in England showed that just a few areas, including Bedfordshire, Luton and Wigan, provide comprehensive care for those in need.

Bee Wee, NHS England’s national clinical director for end of life care, told the BBC: “Over the past year we have been working hard to make changes and move towards a palliative care service that gives everyone a choice about how and where they spend their final days.

“It is really important that dying people, and those close to them, have access to care, support and advice whenever they need it, so we support this as an important issue to address,” she said.




Readers' comments (16)

  • michael stone

    It isn't quite clear, where the money for this is going to come from: ideally, 24/7 support should be available.

    But in the absence of better support, the choice seems to sometimes be between dying at home with less-than-optimum clinical support, or dying in hospital which might not be where the patient wishes to die: that choice, should rest with patients. At the moment, hospital admissions [effectively] against the wishes of patients seem to happen quite a lot - things which happen against the wishes of dying patients, need a better justification than 'there is better [clinical] support in hospital'.

    I feel rather sorry for Bee: she does that NHS England role part-time (I seem to remember 2 days a week), without a dedicated support team, and she clearly gets 'moaned at' from all sides, pretty-much constantly. Including from me.

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  • of course they do and it should be seen to that they get it as well as those suffering from dementia and their carers.

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  • Sone again

    "At the moment, hospital admissions [effectively] against the wishes of patients seem to happen quite a lot - things which happen against the wishes of dying patients,..."

    where is this happening "quite a lot". patients cannot be hospitalised against their wishes unless they lack capacity to make their own decisions. It is against the law.

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  • michael stone

    Anonymous | 16-Oct-2014 7:14 pm

    I know it is 'against the law' - but the guidance for 999 Services in particular, isn't a good fit to the law (some 'contradictory' ideas about 'safeguarding' seem to come into play, which really complicates things). 999 Services are also not told to default to believing what relatives tell them, if patients are unconscious (and most 999 HCPs are using guidance which is at best muddled, and at worst legally wrong, about verbal refusals of life-sustaining treatments from patients: there are also issues with written Advance Decisions).

    I was sent this little story a couple of years ago, by a consultant I was discussing end-of-life with - I have been told of other rather similar things which have happened by other sources:

    'Today I saw a man in his late 80s whose children are a lawyer and a nurse
    respectively and the lawyer is the registered welfare deputy. The man
    lived in a care home. Despite having very clear documented decisions that he was not for further active treatment or admission to hospital, the care home still called the ambulance when he collapsed and the ambulance still conveyed him to hospital and the hospital doctors were
    not made aware of the decision not to treat so gave him antibiotics.

    He arrived on my ward and we did discover at that point that there was a deputy and that she and her family didn’t want any more active treatment. Immediately we respected these wishes in full and made them clear to all parties before getting him back to the care home.

    It can work, but there is not just the issue of doctors and nurses respecting decisions made by proxies or in an ADRT but also being aware that these decisions have been made. And also for the hapless healthcare assistant in a nursing home at 2am who is faced with someone who has collapsed and bashed their face and the ambulance crew who then come out, they need to know 100% that they are on safe ground not conveying the person to hospital or calling the crew and the information needs to be very prominent for all to see. Clearly not what happened here.'

    I'm not 100% sure what was indicated by 'welfare deputy' (not sure if that meant a welfare attorney, or a court deputy).

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  • michael stone | 17-Oct-2014 1:52 pm

    consultants shouldn't be sharing their stories about patients with a member of the public. they have a duty of patient confidentiality.

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  • michael stone

    Anonymous | 17-Oct-2014 7:34 pm

    I couldn't identify a specific patient, and neither can you from what I have recounted above.

    If people who work within the NHS cannot discuss the reality of events on the ground, then the supposed 'transparency' of the NHS doesn't exist, and the public cannot attain the necessary level of information for considered debate/opinion.

    I can add, that this particular consultant, has got 'a high media profile', and is really angry about the way the press misrepresent what he has said in the past [by quoting selectively and out of context] and then 'attack him for saying it', to the point that he is very reluctant to actually say anything at all !

    You avoided discussing the point - which was related to the NT piece this is posted under - of what he did recount, in your comment.

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  • michael stone

    Anonymous | 17-Oct-2014 7:34 pm

    As you have raised 'patient confidentiality', I will point out that there needs to be a debate about the concept of patient confidentiality as it applies during Last Year(s) of Life, with particular emphasis on 'where balance-points should correctly be set':

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  • michael stone | 18-Oct-2014 1:38 pm

    patient confidentiality is between clinicians who don't need your advice. thank you. nurses have undergone professional training and most know their job and take confidentiality very seriously. just run along and comment iin a mickey mouse comic.

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  • michael stone

    I know that most nurses 'take patient confidentiality' 'very seriously' - the problem, is the potential conflict between the concept of patient confidentiality, and section 4(6) of the Mental Capacity Act.

    Mickey Mouse was world superstar, wasn't he ?

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  • Mickey Stone

    you seem obsessed by the MH Act - never mind as you seem to know every section by heart you can just spew it out to those ignorant nurses in case they forget from your death bed - although most professionals will take care of your every interest and cater for your ever whim!

    I assume this is what is of so much worrying you!


    He must consider, so far as is reasonably ascertainable—


    the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),


    the beliefs and values that would be likely to influence his decision if he had capacity, and


    the other factors that he would be likely to consider if he were able to do so."

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