Mark Hazelwood, CEO of Scottish Partnership for Palliative Care reflects on end of life care as part of social care support.

Everyone dies.  In Scotland 60 000 people die each year.  One in every three acute hospital beds is being used to provide important care for someone in their last year of life.  The majority of people in care homes for older people are in their last 18 months of life.  30,000 older people with frailty receive care at home support each week.   People approaching the end of life are the biggest single group of people needing social care support.  I’ll likely need this support, and so too will you.  Improving care for people at this stage of life will be a very good litmus for the success of the reforms in totality, but how can that success be achieved?

People want to live well for as long as they can, even and especially when their remaining time may be short.  The provision of adequate social care can make it possible for someone living with serious illness to maximise independence and quality of life, even as their health declines.  Social care also supports people who are informal/family carers, often making the difference between a role which is tough but sustainable and a role which ends in crisis, collapse and hospital admission. Social care staff can also play an important role in anticipatory care conversations and planning.  Key social care supports to people approaching the end of life include care homes, care at home, respite care and housing support.

The proposals for the National Care Service are welcome in their ambition, and in the attempt to begin to flesh out how necessary and overdue change can be achieved.  There is a huge amount of devil in the current (and yet to be defined) detail, but that is inevitable given the scale and complexity of change envisioned for processes, organisations and cultures.  Here are four things which will be important in determining whether a reformed social care system for people approaching the end of life will live up to the ambitions:

  • Firstly, and very obviously, the adequacy of the announced funding to support social care reform/improvement needs to be kept under review and probably increased. Death is inevitable and so are higher taxes if we are to have a health and social care system fit for purpose.
  • Secondly, the workforce agenda needs to be given priority. Beyond the broad issues of pay and status there’s a need to think deeply about wellbeing. An important dimension within wellbeing is how staff who encounter death, dying and loss repeatedly in their work are equipped, supported and sustained.
  • Thirdly, there is a need to ensure that the well-documented factors which have limited the effectiveness of IJBs are addressed and not simply transplanted into the new Community Health and Social Care Boards (CHSCBs). There is a need to consider how to ensure: collaborative leadership; strategic capacity; continuity in senior roles; and budgeting and planning which is integrated, long term and focussed on outcomes.
  • Finally, if the care for people approaching the end of life is to improve, the new approach needs to meet an “alien from outer space” test. Don’t worry, this isn’t a new policy initiative from Priti Patel’s Home Office.  Rather, an alien from outer space arriving in Scotland should be able to look at our health and care system and clearly see straight away that care for people at the end of life is a big deal.  The alien should be able to look at policies and strategies and see that this is an area of explicit and priority focus for the National Care Service and for the reformed local planning and commissioning bodies.   The alien should see a system which measures and understands peoples experiences at the end of life, and which uses these experiences to inform planning and commissioning which takes a population systemwide approach.  They should see commissioning which identifies and works collaboratively towards delivering better outcomes for this phase of life.

Yesterday I met a recently arrived alien from outer space. Based on what she could see of our health and care system she had assumed that most humans must be immortal.  For this to change we need a political, policy and planning focus just as much as we need structural and process reform.

You can read more about improving people’s experiences of living with serious illness, dying and bereavement in SPPC’s new report Every Story’s Ending (this link takes you away from the ALLIANCE website).

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