Cross Party Group in the Scottish Parliament on Palliative Care 7 January 2009

Appendix 2

Cross Party Group in the Scottish Parliament on Palliative Care – 7 January 2009

Notes from presentation by Dr Elizabeth Ireland,

National Clinical Lead for Palliative Care at the Scottish Government

LIVING and DYING WELL: A national action plan for palliative and end of life care in Scotland

Dr Elizabeth Ireland introduced Living and Dying Well (L&DW) a national action plan for palliative and end of life care in Scotland, and provided an update on current progress.

She outlined the background to the development of the action plan and its launch in October 2008. The first step had been the acceptance by the Scottish Government (SG) of the recommendations made in the Scottish Partnership for Palliative Care’s report Palliative and End of Life Care in Scotland: the case for a cohesive approach in May 2007, which were:

·  to ensure equitable access to palliative and end of life care

·  based on clinical need – not diagnosis

·  living with – as well as the dying from …..

·  the initial focus on the care likely to be delivered in last 12 months

·  to address current inequalities in standards of and access to palliative and end of life care

·  to facilitate the sharing of best practice

·  to enable Scots to make informed decisions about palliative and end of life care.

The SG’s action plan for health and wellbeing Better Health Better Care, published in December 2007, stated that the SG intended to introduce a national action plan for palliative and end of life care in 2008 based on these recommendations. The SG was

and the action plan would

The SG was determined to ensure that patients and carers could become genuine partners in the planning and delivery of care. The SG also worked collaboratively with a broad range of stakeholders including the voluntary sector. Such an approach had built on the fundamental principles of equal access to services, on the basis of need, and care which was free at the point of access. Their action plan for the future of palliative and end of life care in Scotland had reflected all of these dimensions.

L&DW had also fully taken into account the key messages and recommendations published in the Audit Scotland review of Palliative Care Services in Scotland in August 2008 which had recognised that:

·  there was significant variation in the availability of specialist palliative care services

·  there was significant variation in how easily patients with complex needs could access these services

·  most palliative care was provided by generalist staff in hospitals, care homes or patients’ own homes

·  palliative care needs were not always recognised or well supported

·  generalists needed increased skills and confidence in working with families when people came to the end of their lives

·  palliative care needed to be better joined up, particularly at night and weekends.

Dr Ireland presented some recent statistics from ISD on place of death in Scotland from 1981 to 2006 which indicated that deaths:

·  in hospital remained fairly constant at around 60%

·  at home decreased from around 35% to 23%

·  in nursing homes / hospices increased from around 5% to 17%.

Figures showing the mean number of emergency admissions per year for patients in the last five years of life provided statistical evidence of a substantial increase in the final year of life. This increase was irrespective of diagnosis, and was further evidence of the need for joined up services addressed in L&DW.

Dr Ireland outlined the chapter headings of the Action Plan:

·  Assessment and review of palliative and end of life care needs

·  Planning and delivery of care for patients with palliative and end of life care needs

·  Communication and Co-ordination

·  Education, training and workforce development

·  Implementation and future developments

and indicated that Professor Welsh would speak about the first four of these.

A number of steps had already been taken on implementation of the plan and on governance and accountability arrangements. These included the following:

·  There were now Executive Leads in all fourteen territorial NHS Boards as well as in the Special Health Boards. Dr Ireland would be meeting with them to discuss the priority given to palliative care in NHS Boards.

·  A letter had been sent to the Chief Executives of territorial NHS Boards [CEL 40 (2008)] asking them to ensure that sufficient priority was given to implementing the recommendations made in the Audit Scotland report and the requirements set out in L&DW.

·  Delivery Plans - NHS Boards had been asked to prepare delivery plans setting out local priorities and actions and a delivery plan template had been circulated to each NHS Board for completion in draft form by the end of February 2009. These draft delivery plans would be reviewed and feedback would be given to the Boards with a view to the final delivery plans being submitted by the end of March 2009.

·  A National Advisory Group to oversee the governance and implementation of L&DW had been established and was chaired by a Senior Medical Officer at the Scottish Government and the Executive Lead from NHS Borders. The remit and purpose of the group had been agreed and its second meeting would take place in April 09. The group reported to the Director General of NHS Scotland. Dr Ireland reported to the National Advisory Group.

·  Performance and Accountability Arrangements for NHS Boards were in place.

Integration with other National Programmes was a key feature of L&DW, and Dr Ireland highlighted the following:

·  the Clinical Lead for the Long Term Conditions Collaborative was looking at areas relating to complex care and case management

·  the Shifting the Balance of Care programme - palliative and end of life care was one of the eight high impact changes in the programme’s current workstreams.

Recent developments and current activity included the following areas:

·  Education – NES was mainly responsible for the education and training element of L&DW and for supporting the development of a comprehensive education plan. Palliative and End of Life Care Education Champions had been nominated in each NHS Board to help take this forward. NES had appointed a Programme Manager for Palliative Care to work with these champions and support the implementation of L&DW.

·  Direct Enhanced Service - A Direct Enhanced Services (DES) for palliative care was launched in November 2008. Practices would add patients with palliative and end of life care needs (irrespective of diagnosis) onto their QOF palliative care register. These patients would then be assessed and a care plan compiled within two weeks of inclusion on the register. Also within the same two weeks an up to date palliative care summary would be made available to professionals involved in the OOH care for each of these patients. Practices would also be required to asses when patients on the register reached the last days of their life and would then use a recognised integrated care pathway. DES was resourced by funding from Primary Care.

·  Short Life Working Groups – L&DW had identified a number of areas where future development work would be required before a cohesive and accessible approach to palliative care in Scotland could be achieved and a number of working groups had been established to take this forward. Three of these groups would hold their first meetings by the end of that month and it was hoped that all of the groups would submit their recommendations to the Scottish Government by the summer of 2010.

·  Standards for General Palliative Care – It had been agreed that these would be developed by NHSQIS in 2010 after the submission of recommendations from the short life working groups.

·  eHealth – A National eHealth Clinical lead had been appointed and a Palliative Care eHealth Advisory Group had been established. A national electronic Palliative Care Summary (ePCS) was being developed for Scotland and was currently being piloted in NHS Grampian and would be rolled out nationally over 2009/10.

Dr Ireland reminded everyone that LADW was work in progress and thanked everyone who had contributed to the process so far.

Notes from presentation by Professor John Welsh,

Professor of Palliative Medicine, NHS Greater Glasgow and Clyde

LIVING and DYING WELL: A national action plan for palliative and end of life care in Scotland

Professor John Welsh explained that while palliative care in Scotland had developed gradually over the past thirty to forty years there was now a much greater awareness of palliative care and it was developing much more rapidly. Public support for palliative care had always been there and more recently actions by a wide range of individuals had led to the publication of Living and Dying Well (L&DW) which was very much welcomed by the palliative care community and others. Professor Welsh acknowledged the contribution of the Scottish Government and Dr Elizabeth Ireland as well as the Scottish Partnership for Palliative Care and everyone who had participated in consultation in the development of the document.

Professor Welsh reflected that although historically palliative care had been offered mainly to cancer patients near the end of life, things were now improving and L&DW recognised that it should be available to all those with incurable and progressive conditions from an earlier stage in the disease process. He highlighted the significance of the five main themes embedded in the Action Plan:

3.1  Assessment and review of palliative and end of life care needs

3.2  Planning and delivery of care for patients with palliative and end of life care needs

3.3  Communication and Co-ordination

3.4  Education, training and workforce development

3.5  Implementation and future developments

and based his presentation on the first four of these.

3.1 - Assessment and review of palliative and end of life care needs aimed to ensure that all patients and carers with palliative and end of life care needs were identified and their physical, social, emotional and spiritual needs were appropriately assessed and reviewed.

The first step key to providing appropriate palliative care was early identification of those patients with progressive and incurable conditions who were likely to benefit. Secondly, diagnosing that the dying phase had been entered was paramount. This was not easy but the ability to recognise when a patient was entering the dying phase allowed the implementation of pathways such as the Liverpool Care Pathway for the Dying.

The aim should be to identify palliative care patients and their palliative care needs, assessed holistically, at an early stage. Recognition of the triggers which signalled such needs, such as multiple emergency admissions to hospitals (SPARRA), weight loss, declining mobility, speed of decline, poor performance status and use of the palliative prognostic indicator, all helped to identify this time point in a patient’s life.

Clinicians should use tools available such as:

·  a palliative care register

·  the Gold Standards Framework

·  the SPARRA risk prediction algorithm for those patients 65 and over at risk of emergency inpatient admission

·  the Indicator of Relative Need and Single Shared Assessments for holistic assessment of needs.

3.2 - Planning and delivery of care for patients with palliative and end of life care needs aimed to ensure that care plans were developed and implemented for all patients and carers with palliative and end of life care needs as the outcome of a patient centred planning process which takes account of their needs, wishes and preferences at every stage of the patient journey.

Once those patients with palliative and end of life care needs were identified appropriate care and support should be planned, thus making it easier to create the opportunity to have conversations to explore patients’ wishes and choices around preferred place of care / place of death, DNAR, the use of anticipatory prescribing, cessation of active treatments etc. When this information was obtained it should then be documented in an Advanced Care Plan which was held by the patient and updated as needed.

The aim of 3.3 - Communication and co-ordination was to ensure that all patients and carers with palliative and end of life care needs were supported to participate fully in developing care plans and making decisions about their care, to ensure that patient and carers needs were communicated clearly across care settings and systems to all professionals involved and to ensure that the care of all patients and carers with palliative and end of life care needs was co-ordinated effectively between specialities and across care settings and sectors.

A project to ensure that all patients with palliative and end of life care needs and carers were supported to participate fully in developing care plans and making decisions about their care was being piloted in North West England and was showing beneficial effects for both the patients and carers. Using simple language during open discussion had proved very valuable and enabled them both to understand relevant information more clearly and plan ahead more easily.