Posted by: ayrshirehealth | February 10, 2016

Let’s talk about palliative care by @craigwhitephd

Assets and expertise

As a society we are facing a growing need for appropriate care in the face of ageing, life limiting illness and death. Strategic Framework for Action on Palliative and End of Life CareAlthough the scale and complexity of this makes this challenging – we have substantial assets and expertise within Scotland with which to respond to this need.

In 2014 the World Health Assembly – the governing body of the World Health Organisation – passed a resolution requiring all governments to recognise palliative care and to make provision for it in their national health policies.

The Strategic Framework for Action on Palliative and End of Life Care is the Scottish Government’s response to that call (http://www.gov.scot/Publications/2015/12/4053/downloads).

Health and Sports Committee

The Health and Sport Committee of the Scottish Parliament has published it’s report entitled:

‘We Need to Talk About Palliative Care”

(http://www.scottish.parliament.uk/S4_HealthandSportCommittee/Reports/HSS042015R15.pdf ). The Scottish Government have responded to this

(http://www.scottish.parliament.uk/S4_HealthandSportCommittee/Inquiries/20160121-SG_Response.pdf )

and recently welcomed the opportunity to provide evidence to MSPs on progress and future plans

http://www.scottish.parliament.uk/parliamentarybusiness/report.aspx?r=10336&mode=pdf.

We need to talk about palliative careThe Framework outlines the vision that by 2021 everyone who needs access to palliative care will have access to it.

Surely everyone in Scotland currently has access to palliative care – after all most people have a GP and everyone who has been diagnosed with a progressive, incurable and/or life-limiting illness has been in touch with a Consultant ?

Theoretically yes, but the vision is for access to the sort of palliative care that the World Health Assembly refers to, where there is “:…palliation across the continuum of care, especially at the primary care level, recognizing that inadequate integration of palliative care into health and social care systems is a major contributing factor to the lack of equitable access to such care.”

This is the vision for what this means for Scotland.

We were fortunate to be able to appoint Professor David Clark as the Consulting Editor for the Framework, ensuring that all of the views received throughout the engagement process were considered objectively against the best available international evidence and expert opinion.

The publication of the Framework and supporting evidence has been welcomed internationally (http://endoflifestudies.academicblogs.co.uk/scottish-government-launches-its-strategic-framework-for-action-on-palliative-and-end-of-life-care/).  As with any change on the scale of that envisaged in a national strategic framework, there are a wide range of ideas and views on how this might be achieved.

Conversations

The Scottish Government has outlined it’s commitment to supporting changes required to support access to palliative and end of life care being available to all who can benefit from it, regardless of age, gender, diagnosis, social group or location. Wordle EOLC

It has been recognised that people, their families and carers will need to have timely and focused conversations with appropriately skilled professionals to plan their care and support towards the end of life, and to ensure this accords with their needs and preferences.

This will in turn require that a wider range of communities, groups and organisations understand the importance of good palliative and end of life care to the well-being of society.

The health and social care system will be increasingly configured to maximize the changes that people receive health and social care that supports their wellbeing, irrespective of their diagnosis, age, socio-economic background, care setting or proximity to death.  Many more people will have more opportunities to discuss and plan for future possible decline in health, preferably before a crisis occurs, and will be supported to retain independence for as long as possible.   People will need to know how to help and support each other at times of increased health need and in bereavement, recognising the importance of families and communities working alongside formal services.

All of this will be supported by a culture, through resources, systems and processes within health and social care services that empower staff to exercise their skills and provide high quality person-centred care.

Enhanced contribution

All of this can be achieved through improved identification of people who may benefit from palliative and end of life care, supported by an enhanced contribution of  a  wider  range  of  health  and  care  staff.  how they felt about palliative and end of life care

There must be a stronger sense among staff of feeling adequately trained and supported to provide the palliative and end of life care that is needed, including a better understanding of how people’s health literacy needs can be addressed.

This is likely to be helped through a greater openness about death, dying and bereavement in Scotland – which will in turn be enabled through the recognition of wider sources of support within communities that enable people to live and die well.

I recently had the privilege of working with the Chief Medical Officer and some colleagues on her Annual Report for 2014/15 (http://www.gov.scot/Resource/0049/00492520.pdf ).  CMO Annual ReportThis report included the suggestion that “Clinical leaders need to challenge their own thinking and ask themselves whether they have a growth mindset.

This will mean an enhanced awareness of opportunity for self improvement, more engagement with challenge and a greater persistence in the face of obstacles.”  This is pertinent to all of the commitments outlined in the new Framework.

To achieve our vision many people, organisations and agencies will have to work together in a culture of collaboration – ensuring that there is a balance of constructive challenge and a recognition of the benefits of aligning support, engagement and delivery mechanisms for maximum benefit.

Much of the co-ordination, leadership and support for this work will come through the Health and Social Care Partnerships across Scotland.   The way in which these changes will be delivered may require significant changes in the way in which organisations approach the delivery of palliative care provision.

I would be delighted to hear from you, through this blog, email (craig.white@gov.scot) or on twitter  (@craigwhitephd) if you have an interest in this work.

This week’s blog was by @craigwhitephd (Professor Craig White) Divisional Clinical Lead of the Quality and Planning Division of the Healthcare Quality and Strategy Directorate at the Scottish Government and Honorary Professor in the College of Medicine, Veterinary and Life Sciences at the University of Glasgow.

The Strategic Framework for Action on Palliative Care and Supporting Evidence Summary are available at: http://www.gov.scot/Publications/2015/12/4053/downloads

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Responses

  1. We have the same issue over here in the states. I grow ever more frustrated with our inability to provide patients with the care they deserve. Primarily the obstacle appears to be lack of willingness on the providers behalf to trigger a consult with palliative or supportive care. Most often, We do too little, too late. I am specifically interested in bridging the gap in education/understanding so that our patients and their families receive the best care possible.

    • Kate
      Many thanks for taking the time to post a response to the blog. We have recognised the importance of education and understanding – making a commitment to develop an educational framework and infrastructure that makes the necessary changes and improvements. My colleagues at NHS Education for Scotland and the Scottish Social Services Council will be leading on this. If you would like me to put you in touch with them to share learning as the work develops, then please do email me at craig.white@gov.scot
      Best wishes
      Craig

  2. (Declaring I work for Scottish Government so I can note I am commenting in an entirely personal capacity, as a person with a progressive disease).

    As I read this I find myself wondering who the us is that should talk? One way to challenge clinical leaders is to expose them to a wider variety of mindsets, to open up a much wider conversation. But to do that means getting us all to the same page on the ‘where we are at’. It means helping us learn what the clinical leaders know. And it means supporting and encouraging us all to enter into the conversation.

    Without a prompt, like a progressive illness, most of us are too busy avoiding thinking about death to seriously entertain thoughts about dying. Even with a prompt I think very few people have any idea of what they are and are not entitled to, will and will not receive, as they die.

    Even personal witness of the experiences of those close to us can fail to get us ready and engaged. The trouble is that too often the flaws and failings and issues get drowned out by the grief of the loss. It took my uncle years to even mention, still less feel aggrieved by, the fact that his local council delivered the bed and chair he had hoped would give my aunt a few more weeks at home as she was dying of MND several weeks after she had in fact died. In a hospice where it should be noted the care she received was excellent. A health care win, social care and joined up service fail.

    And frankly even direct experience does not guarantee a non professional is ready or equipped to enter the conversation. I know my end will likely be one of complex palliative care needs. I am an engaged and active and concerned citizen. But I still can’t bear to look into what might and might not happen beyond the ‘easiest route’ of considering the option of suicide. Partly I think because whilst choosing to live or die is something I can control for myself, the nature and quality of palliative care available to me when the time comes will not be in my control. And illness and death tweak hard at our fears about independence and control.

    Yes we need to talk about palliative care, but to widen those beyond the professionals that means we need to be prodded, educated and supported to have those conversations.

    (And thanks for all your work to ensure Scotland is not just a good place to live, but a good place to die. It’s both inspiring and reassuring).

  3. Dear Cat

    Many thanks for taking the time to comment so helpfully and positively on this blog.

    I couldn’t agree more with you – personalisation of care, including the timing and approach to conversation about care and support needs (current and possible future ones), is vital. This must of course be accompanied by a system of care and support that can respond in a timely way to needs that might emerge – as your Uncle’s experience in relation to the delivery of equipment so powerfully illustrates. The new Health and Social Care Partnerships are very well placed to deliver and continuously improve care processes to ensure that scenarios like that do not happen. Since the Strategic Framework for Action on Palliative and End of Life Care was launched on 18th December, we have been in discussion with a range of colleagues working on health and social care integration. Many of the issues you have highlighted are featuring in their work. The Scottish Government have committed to produce yearly updates on the progress made in implementing the changes required, though I would be pleased to put you in touch with colleagues working on any of the commitments where you would be interested to talk or hear more. Please do not hesitate to contact me at craig.white@gov.scot if you would like to arrange this.

    With best wishes,

    Craig W

  4. […] https://ayrshirehealth.wordpress.com/2016/02/10/lets-talk-about-palliative-care-by-craigwhitephd/ […]


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