Annette Brooke MP writes…Choice at the end of life is vital – free social care can make that happen

Annette BrookeThere are no dress rehearsals when it comes to where we are and who we are with when we die – so it’s crucial that people have as much choice and control over the situation as possible.  This is important not only to the person who is at the end of their life, but also those close to them. A person’s last days will stay with family and friends forever, so it is important that they should be left with a lasting, positive memory of their loved one receiving good quality care in a place of their choice.

What is not acceptable is for someone to end their days against their wishes in an expensive hospital bed, purely because they did not have the right support to die at home. Sadly, we know far too many people currently do not die in a place of their choosing. Macmillan Cancer Support found that 36,000 people with cancer who wanted to die at home died in hospital in England in 2012. In fact, 73 per cent of people living with cancer would prefer to die at home, but figures show only 30 per cent are currently able to do so. We cannot continue to have final experiences and enduring memories shaped by the absence of choice for people at the end of life.

Unnecessary hospital admissions can occur because people who are caring for someone who is dying at home reach a breaking point or they feel unable to give their loved one what they need in terms of practical support. Families and friends of those at the end of life can often only do so much at such an emotional time. Having help with basic practical tasks such as cooking, washing dressing would enable them to experience a high quality of care, and ultimately support them to stay at home. Yet the current means-tested threshold for free social care of £23,250 in assets excludes many people and presents terrible financial dilemmas to families at a time of distress.

If people at the end of life had access to free social care as part of a package of support at the end of life, then that would give choice where it is so often currently absent, and prevent friends and family from feeling overwhelmed by the practical aspects of looking after someone at the end of life.

There is broad acknowledgement that change is needed, with the Government already saying it sees ‘much merit’ in the principle of free social care for all at the end of life. The government’s review into choice at the end of life will be published in February, and I hope that free social care for people at the end of life is included in its recommendations.  I was proud the Liberal Democrats voted in favour of the introduction of free social care at our party conference in the autumn. What is now needed is for this political will to be converted into action. It falls on the next government to make this simple and moral measure a reality.

* Annette Brook is the Liberal Democrat MP for Dorset and North Poole.

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6 Comments

  • Eddie Sammon 1st Feb '15 - 9:22am

    Hi Annette. I agree free social care is a good idea and the threshold for £23,250 in assets is too low. It also saddens me that we in the political community don’t spend more time talking about important things like this.

    Regards

  • David Warren 1st Feb '15 - 10:04am

    An excellent article.

    The current social care set up needs overhauling, the only people really benefitting from it are the shareholders of private ‘care companies’.

    I have been shocked at what I have seen in many years of having to deal with care issues.

    It is shameful that a wealthy country likes ours is incapable of caring properly for the elderly in society.

  • Well said, Annette.

    Our approach to death over the last thirty years has gone slightly mad.
    We now have a culture where we are requiring people to die in hospital even when they would prefer to be elsewhere.

    Not only are hospital beds expensive, they should not be used to warehouse those who are about to die.

    Over the last five years things have got worse because of the short-sighted dogma of ‘austerity’.
    The cuts in local council spending from the Coalition’s Mr Pickles has forced elderly people out of residential care and into hospital beds.
    It is a classic case of Conservative Cuts forcing up the costs to the taxpayer whilst making the service worse.
    We lose out twice over.

  • matt (Bristol) 2nd Feb '15 - 9:41am

    Free social care for all may be a good idea. But it would need to be matched by a realistic rise in the funding allocated to councils (if they were still to administer it), allowing for the rise in demand that would result.

    Free social care for those at the (very) end of life who are deteriorating on a daily basis is already available through the Continuing Health Care arrangements in England and Wales. Often hold-ups in hospital are in fact due to this very fact, as hospital and council staff bicker over eligibility. Shifting the threshold for such funding would only move the bickering to an earlier date in the patient’s life, unless there were to be a new relationship based on trust (and not mutual suspicion and buckpassing) between hospitals, community health and community social care. It’s not there right now in many authorities.

    BTW, the 23,250 threshold is already on the way out, thanks to the Care Act passed under this government.

  • SIMON BANKS 2nd Feb '15 - 10:26am

    One problem is that when public authorities, whether NHS boards or local councils, set their priorities, end of life care is rarely one. Councils particularly have often in the past grant-aided relevant voluntary organisations, but in an effort to streamline their funding regimes and make them more coherent and “strategic”, they set a few priorities and exclude all else. This makes sense until you see what it does to end of life care or domestic abuse survivor care organisations.

  • matt (Bristol) 2nd Feb '15 - 10:57am

    Simon, there are client groups with complex needs which are considerably less well-funded than end-of-life cases. (Although NHS strategies of allocating funding by diagnosis – which typically local authorities do not do so much of these days – mean some end-of-life cases are more equal than others). For eg, conditions cuased or exacerbated by alcoholism, or (less politically controversial) acquired brain injuries – also, longterm post-stroke support can be very poor in some areas.

    Most councils are now trying to make decisions based on need and level of complexity rather than ‘you have X disease, so you get X help’ – but this is often poorly commmunicated and does not always dovetail with community health priorities or the emotional needs of patients and famliies, who after what can sometimes be months of years of uncertainty can regard getting a specific diagnosis as the ‘big thing’ and be disappointed when social services don’t jump to it.

    No-one knows how bad it can be for someone else, they can just see their relative is suffering. But the social worker sees that the relative is relatively low in need compared to the next person.

    Local authority social care is in a rationing situation, but the fact of it being on the frontiers of the free-at-the-point of access NHS services, exacerbates complex and sometimes unrealistic expectations.

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