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Scottish Partnership for Palliative Care comments on The Inescapable Truth about Dying in Scotland (a new report by Dignity in Dying)

Following the recent publication of The Inescapable Truth by Dignity in Dying, the Scottish Partnership for Palliative Care has published the following comment on the report:

SPPC acknowledges the stories of individual suffering contained within the report recently published by Dignity in Dying. The relief of suffering and the promotion of wellbeing in difficult life circumstances is the central concern of palliative care. It is important that the voices of people who have bad experiences are heard so that we can keep making improvements.

Scotland is internationally recognised as having some of the best palliative and end of life care in the world. Every day thousands of staff in hospices, hospitals, care homes and in the community provide care which helps people and their families to get through the difficult times which can come with death, dying and bereavement. Most people in Scotland will have seen or experienced examples of such care, and be reassured that experiences of the type described in the Dignity in Dying Report are relatively rare.

Specialist palliative care, like any part of our health and social care system, cannot claim to be perfect 100% of the time. However, modern palliative care has made great progress in improving people’s experiences towards the end of life, and it is very unusual for doctors to run out of options to control pain. As the report acknowledges, in the rare cases where symptoms can’t be reduced to a level which a person feels able to bear, there is the option for a doctor to use medication/sedatives to reduce the person’s conscious awareness of those symptoms.

The provision of palliative care in Scotland is guided by a range of relevant guidelines and standards, including Scottish Government Guidance Caring for People in the Last Days and Hours of Life, GMC Guidance Treatment and Care Towards the End of Life: Good Practice in Decision-Making andthe NHS Healthcare Improvement Scotland Scottish Palliative Care Guidelines.

Modern palliative care has made great progress in improving people’s experiences towards the end of life, and more improvements can be made. There must be a stronger focus in Scotland on improving the care which these people receive towards the end of life. Around 57,000 people die annually in Scotland. Of these it is estimated that as many as 47,000 people will have needs arising from living with deteriorating health for years, months or weeks before they die. Most people will be at home, in hospital or in a care home towards the end of life. There is a need to maintain adequate staffing levels to provide care and support in these settings. There is a need for training and education to build the skills and confidence of these staff. There is also a need to invest in specialist palliative care services so that they can both help people with more difficult symptoms, and also provide advice and support to other staff.

There is clear evidence that investments of the sort outlined above will improve people’s experiences of death, dying and bereavement. Scotland needs to become more ambitious about ensuring that everyone gets the best care possible, whether at home, in hospital, in a care home or in a hospice.

The SPPC's full response can be viewed here: Scottish Partnership for Palliative Care comment on The Inescapable Truth about Dying in Scotland (a new report by Dignity in Dying)

Updated SPPC Position Paper on the Impacts of Brexit on Palliative and End of Life Care

SPPC has updated its position paper on the potential impacts of Brexit on palliative and end of life care in Scotland. The revised paper includes consideration of the Immigration White Paper and the latest developments in planning for a No Deal Brexit, with implications for medicines supply. A copy of the paper can be downloaded here.

Based on desk research and engagement with our membership the original paper was published in December 2018.

The paper starts by acknowledging the uncertainties currently surrounding Brexit and describes its approach to conducting analysis in spite of this uncertainty. After providing some background on SPPC and palliative care in Scotland the paper describes current “non-Brexit” challenges in palliative care. The impact of Brexit on the key domains of workforce, scientific research, medicine supply and funding are then considered.

The paper contains the findings of a recent SPPC survey designed to capture the views of people who are involved in a professional capacity in providing care for people approaching the end of life in Scotland.

Based on its assessment of available evidence and information the paper concludes that Brexit will have a negative impact on palliative and end of life care. In all likelihood Brexit will significantly damage the care which people receive towards the end of life.

SPPC exists to improve palliative and end of life care in Scotland. It is not a role of SPPC to assess or to comment on the wider merits and demerits of Brexit. However, in terms of what is best for the care of people approaching the end of their lives in Scotland, SPPC concludes that it would be better to avoid Brexit.

SPPC response to BASRiS consultation

The SPPC has submitted a response to the Scottish Government's Consultation on Benefits Assistance Under Special Rules in Scotland (BASRiS).

SG Action Plan on Neurological Conditions

The SPPC has submitted a response to the Scottish Government's consultation on its draft National Action Plan on Neurological Conditions.

New community development project to support "compassionate communities" in Scotland

The Scottish Partnership for Palliative Care (SPPC) is embarking on a new project, funded by Macmillan Cancer Support. Taking a community development approach, the project aims to support communities who are interested in taking local action to improve people’s experiences of death, dying, loss and care.

The project is part of the SPPC's ongoing Good Life, Good Death, Good Grief initiative, which promotes more open and supportive attitudes and behaviours relating to death, dying and bereavement in Scotland.

Later in 2019, the SPPC will issue an invitation to community groups and organisations to express an interest in being part of the project. A number of communities will be short-listed, and supported by the SPPC to work up more detailed applications identifying local priorities and activities to improve death, dying, loss and care in their community.

Following the application process, up to four communities will be selected to be part of the project, and to receive dedicated support from the SPPC for their local project, for a period of two years.

The project will build on learning from the international Compassionate Communities movement, and its design has been particularly influenced by work by the Groundswell Project in Australia, where a National Compassionate Communities Practice Forum (NCCF) has been established, following a community development model.

The project also aims to support Scottish communities to learn from more local knowledge and experience, for example from the award-winning Compassionate Inverclyde programme where the community has taken action to become more "compassionate, helpful and neighbourly".

The SPPC is currently recruiting an experienced Community Development practitioner to help establish, shape and manage the project. More information about the job vacancy is available here. The closing date is Monday 4th February 2019.

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