Latest news from SPPC

Launch of Good Life, Good Death, Good Grief

Good Life, Good Death, Good Grief officially launched in Edinburgh on 22nd November. The launch was marked by Dining with Death, a 2-course lunch with conversation menu to illustrate some of the principles of the alliance.

The launch was attended by Liz Lochhead, Scotland’s poet laureate, who shared her personal experiences and read a poem about death and grief. Delegates also witnessed the premier of 20 takes on death and dying, a short film in which members of the Scottish public talk about death, dying and bereavement.

Over a 2-course lunch at Howies Restaurant, delegates were encouraged to follow a ‘conversation menu’ addressing questions such as ‘What things do you think make for a good death?’ and ‘How would you like to be remembered?’.

The 70 invited guests heard from Kate Lennon, Chair of Good Life, Good Death, Good Grief, about the aims, visions and values of the new alliance, which hopes to make Scotland a place where there is more openness about death, dying and bereavement.

One couple who understand the importance of talking about death is Scott and Llana McNie, who organised their toddler daughter’s funeral before she died.

The parents lost their three-year-old daughter Sienna to brain cancer in April, three months after they were told she couldn’t be cured.

Her parents say the reluctance among medical professionals to talk about Sienna’s death meant they almost didn’t get the chance to bring her home to die.

Scott added: “We found the doctors didn’t want to talk about palliative care options for Sienna. No one asked us where we wanted her to die.

“If we hadn’t been so willing to talk about Sienna’s death she would have spent her final weeks in a hospice rather than with her family and that would not have been right for us as a family.

“We had to accept she was going to die to make sure she had the best possible time while she was with us.

“We also wanted to give her the best funeral we could arrange, complete with a pink coffin in a pink carriage pulled by white horses and 100 pink balloons.

“To organise that took planning and we wanted to do it when we were still in the right frame of mind to do it.

“Death is a fact of life and when it’s a child it is very, very sad, but not talking about it can only make the situation worse.”

Good Life, Good Death, Good Grief currently has over 100 members. Membership is free, and open to all groups, organisations and individuals who wish to support the aims and objectives of the alliance. Sign up here.

Links

Press release

Short film: 20 takes on death and dying

Conversation menu

Media coverage of the launch

Annual Conference 2011 - Thinking Ahead in Palliative Care

A full report on our 2011 annual conference is now available here.

Living and Dying Well Update

This page provides an update (as at July 2011) on the implementation of the Scottish Government’s action plan on palliative and end of life care Living and Dying Well. It gives information about work at national level, but does not cover all the work going on at local level across Scotland.

National Measures of Quality

A group being chaired by Dr David Oxenham has met twice and is aiming to complete its work in the autumn. The Group is attempting to identify measures which will provide (at NHS Board and national level) evidence of change within the health and social care system which is indicative of improved outcomes for patients with palliative and end of life care needs and their families. It is intended that as many as possible of the measures will work across settings and for different demographics. This is to be achieved within existing resources.

Policy on the resuscitation of adults (DNACPR)

A small number of candidate measures to support audit of the new policy have been identified and a slightly revised version of these will be consulted upon more widely.

Public Information on Palliative Care

Content to be hosted on the NHS Inform website has been developed by SLWG4. NHS Inform are currently developing the area ready for hosting.

Clinical Guidelines

Living and Dying Well said that all NHS Boards should have guidelines available on 30 core topics and should collaborate to ensure that this happened. All NHS Boards will have the opportunity to participate in a collaborative which will review and development of the guidelines previously developed in a collaboration led by NHS Lothian.

Palliative Care DES

A revised version of the DES has been produced which will provide richer data on palliative care in primary care settings. This will be introduced from April 2012.

The Electronic Palliative Care Summary (ePCS)

Dr Libby Morris is now the eHealth Lead for this project.

Alliance to Promote More Open Discussion of Death Dying and Bereavement

This new alliance will launch in the autumn of 2011.

NHS Board Reporting Template

It is understood that a reporting template for NHS Boards is to be issued during the summer. This template will allow the Living and Dying Well National Advisory Group to ascertain a baseline of progress against the areas for action and also to identify areas requiring further support. Broadly speaking this template will seek information about plans, processes and structures, whilst the national measures of quality (see above) will focus on outcomes and be integrated into the template at a later stage.

Commissioning of Hospice Services

The Scottish Government is revising the guidance to NHS Boards (HDL 2003 18).

Advance / Anticipatory Care Planning

The recent round of Scottish Partnership for Palliative Care meetings included presentations, updates and problem solving on the implementation of ACP across six health board areas.

Support by NES

The third and final stage of the longitudinal ACP Facilitator training evaluation is in progress with the final report from Inspire Research due in June. It is anticipated that the final recommendations will provide feedback on the effectiveness of the train the trainer approach and offer suggestions for ongoing facilitator support.

The new web based ACP toolkit is now available via the NES website at www.palliativecareinpractice.nes.scot.nhs.uk

A new online WBL resource Principles of Palliative and End of Life Care is also be available at www.palliativecareinpractice.nes.scot.nhs.uk

Both these online resources have been piloted with a range of practitioners. Information on how to access and use the resources is now being widely disseminated.

NES’s Communication and Human Relationships work stream (in collaboration with Long Term Conditions)

- 2010-11 projects: Two of the six NES supported projects have submitted final reports with the remaining four due at the end of June 2011. A summary of the final reports will be made available via the palliative education Managed Knowledge Network (MKN) www.knowledge.scot.nhs.uk/palliativeeducation

- Evaluation of the impact of NES supported projects: The report identified a number of recommendations which are currently being considered. An executive summary of the key findings of the evaluation will be made available via the palliative care MKN

- The report on the scoping exercise undertaken by Create Consultancy to identify how healthcare professionals develop their communication skills, attitudes and behaviours will be made available via the palliative education MKN

- A new web based resource to be entitled Communicating, Connecting, Caring is currently under construction with an anticipated completion date of September 2011. The site will offer healthcare workers, managers, supervisors and educator’s information and resources to support the development of communication and relationship skills and behaviours.

- Funding has been made available to support the wider implementation of the CARE measure and a Practice Based Small Group Learning Module (Sensitive conversations at the end of life: Learning from each other using PBSGL methodology). Applications for funding for these initiatives have been invited.

Palliative Care in Acute Settings

In collaboration with the Living and Dying Well Short Life Working Group 5 and Consultant Medical Staff an online publication aimed at raising awareness of examples of good practice in palliative and end of life care in acute hospitals has been developed by NES and will be widely circulated in the coming months. Copies of the document will be made available via the palliative education MKN

Improving Palliative Care in Care Homes

The Steering Group is currently putting together a signposting resource on palliative care for providers.

Palliative Care for Children and Young People

A Health Care Strategy for Palliative Care for Children and Young People has been produced by SCYPPCEx and is currently out for consultation.

NES supported the Scottish Children and Young People Palliative Care Executive Group (SCYPPEx) to deliver a train the trainer event and to develop a DVD and other resources to support the implementation of the Children and Young People Acute Deterioration Policy. The DVD has been circulated to the trainers who attended the train the trainer event. In addition, recorded materials from the train the trainer event will be made available via a direct link on the Children and Young People’s MKN http://www.knowledge.scot.nhs.uk/child-services/help.aspx

Other Educational Support Work by NES

Practice Based Small Group Learning Module (PBSGL)

This unit of learning was developed by PBSGL Scotland as part of the communication and human relationships education and training projects. This unit is now available for use with General Practice teams and it focuses on End of Life Care practice and difficult conversations.

Higher Education Institute (HEI) Engagement

A second event to explore approaches to support the integration and embedding of palliative and end of life care education in undergraduate and post graduate programmes for nurses and allied health professionals has been proposed to HEI’s in Scotland.

Department of Health e-End of Life Care for All education (e-ELCA) programme

Access to this programme is now available to NHS Scotland staff. Information on how to access the programme had been circulated to all NHS Board Palliative care Executive Leads, Living and Dying Well Board Education Champions and the Scottish Government.

 

A beginner’s guide to successful palliative care research

The Scottish Partnership for Palliative Care has published basic guidance for health and social care professionals on how to begin to engage in palliative care research.

Click here to view the guidance.