Latest news from SPPC
The Hidden Worlds of Caring and Serious Illness
Three new short films entitled “At Home with Illness” have been launched to mark Carers Week 2014. The gritty films take an unflinching look at what happens when serious illness arrives in a family.
Although this situation affects thousands in Scotland the lives of people who are seriously ill are largely hidden, and so too are the sometimes harsh realities of those who care for them. 1 in 8 of the Scottish population are involved in providing care and support to a family member. Around 40, 000 people each year in Scotland will die after a period of protracted illness.
Filmed intimately at home, three very different families tell their own powerful and individual stories of love, loss, crisis, tears, hope and laughter. One of the 3 films, “The Long Goodbye” has already become a word-of-mouth success on YouTube. All three films have been commissioned by a consortium of national charities, led by the Scottish Partnership for Palliative Care (SPPC).
Mark Hazelwood, Chief Executive of SPPC, said:
“We wanted to lift the lid on a hidden world – the world of families living with serious illness. This is a world in which thousands of Scottish families exist, yet their experiences are seldom seen or heard. This leaves society ill-equipped to support others and ill-prepared should the same situation affect us. The films allow the families to tell it how it is, and there are lessons for everyone in the stories they tell.”
Organisations involved in the commissioning of the films include: Marie Curie Cancer Care, MND Scotland, MS Society Scotland, MSA Trust, Parkinson’s UK and PSP Association.
The films can be viewed here: At home with illness
Call for a new Scottish Government strategy to improve end of life care in Scotland
Marie Curie Cancer Care and the Scottish Partnership for Palliative Care (SPPC) have published a report which calls on the Scottish Government to act on recent promises to replace Living and Dying Well: a national action plan for palliative and end of life care in Scotland.
It’s now been six years since the publication of Living and Dying Well in September 2008 and although progress has been made, challenges remain. Earlier this year over 80 people with an interest in palliative care including MSPs gathered in Edinburgh to discuss its successes. The report of that gathering confirms the urgent need for a broad reaching new framework for action.
In Are We Living and Dying Well Yet?, authors Marie Curie and the Scottish Partnership for Palliative Care have set out steps to meet the challenge of improving experiences of death, dying and bereavement for the people of Scotland. The recommendations are that a new strategic framework for action should:
- Be based on engagement with the Scottish public, patients and families, and on their needs, wishes, experiences and expectations.
- Encompass the needs of all age groups, diagnoses and individual circumstances.
- Address palliative and end of life care as a society-wide issue, adopting a public health/health promoting approach.
- Encompass not only the immediately obvious domains of health and social care but also other relevant fields such as Education and Communities.
- Be underpinned by the development of data, meaningful measures and relevant research activity.
- Encompass statutory, voluntary and independent sectors.
- Apply knowledge of approaches proven to achieve and sustain change.
- Set out coherent and compelling approaches, including investment where necessary, to improve the areas of concern:
- Delivering care which is better aligned to what people want – for example location of care and death.
- Raising public and professional knowledge and awareness of palliative and end of life care.
- Increasing openness about death, dying and bereavement and building individual and community resilience to deal with the hard times which can come with these experiences.
- Improving the identification of people who could benefit from palliative care, and their carers, and ensuring that they get the care and support they need.
- Ensuring consistently good care in the last days and hours of life in all settings.
The report highlights the increased demand on health and social care services as more people are living into old age and dying with multiple conditions.
However, the report argues that the challenge is even broader than the improvement of these traditional formal services, claiming that that there is a need to improve the wider experiences of death, dying and bereavement for the people of Scotland. This requires multiple collaborations and interactions within and across sectors, and shifts in public attitudes towards greater openness about death.
Richard Meade, Head of Policy and Public Affairs Scotland at Marie Curie said:
“We only have one chance to get end of life care right for people and this must be our ambition for everyone. The Scottish Government has achieved a great deal over the last six years, but it is clear that there are still challenges remaining. A new framework for action will help us address the inequity of access to end of life care that those with a non-cancer diagnosis face. It can help us ensure that people get the care they need, in the way that they want, in a place they want to receive it. . England has its survey of bereaved people, VOICES, but there’s no survey of this kind carried out in Scotland. This is a missed opportunity to inform future service planning, identify gaps and deficiencies in service delivery, as well as helping policy-makers understand to what extent care delivered is truly person-centred.”
Kenny Steele, Chair of the Scottish Partnership for Palliative Care said:
“Every one of us will experience end of life care through our family and friends and eventually personally. It is not a minority issue but one that touches everyone in society. This is a topic which is not just a ‘health’ issue but is a wider societal issue and will need broad engagement to succeed. The development of a strategic framework for action will help to focus efforts to meet the challenges identified in today’s report.”
The report, Are we living and dying well yet? is available here: weblink.
The Silent Treatment
Do great playwrights like Shakespeare and Pinter have something to teach clinicians about empathy and compassion? Dr David Jeffrey explores this question in his blog.
Annual Conference speakers announced
Bookings are now open for Scotland’s premiere event for anyone with an interest in palliative and end of life care:
Choices & Decisions Towards the End of Life
Wednesday 17th September 2014 Royal College of Physicians Edinburgh
Featuring a mix of high quality speakers and delegate interaction the event will provide:
- an opportunity for learning relevant to practice and workplace
- a chance to network and to share information and good practice
- challenging perspectives and energising inspiration
Confirmed topics and speakers include:
How can improvement science make NHS Scotland safer and more compassionate?
Prof Jason Leitch
The Liverpool Care Pathway – What have we learned which should guide the future?
A multi-perspective interactive exploration including contributions from Prof Craig White and others TBC
What can decision theory bring to end of life decision making?
Prof Carl Thompson & Dr Kate Flemming
“The adventure of death”: Reflections on palliative care, death and dying in World War I
Dr Sally Lawton
Setting goals to live well
Dr Sally Boa
To book online and for more information about group and member discounts available, click here: weblink.
Response to Carers Legislation Consultation
The Scottish Partnership for Palliative Care has responded to the Scottish Government consultation on proposals for carers legislation. A copy of the response is available here: weblink.
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