Notes of the Meeting of the Palliative Care Leadership Collaborative

Notes of the meeting of the Palliative Care Leadership Collaborative

10th & 11th December 2015

Present:

Barbara Monroe

Maria McGill

Myra Bluebond-Langner

Jane Collins

Heather Richardson

Ros Taylor

Heidi Travis

Barbara Gelb

Phil Larkin

Mark Hazelwood

Adrienne Betteley

Sheila Payne

With input by teleconference from Heather Weir and Veronica Snow

Guest speaker: Fliss Murtagh

1.  Welcome

BM welcomed all to the meeting. She welcomed new members – PL and MBL

2.  Update on the funding for the collaborative

BM updated the group on recent funding received from February Foundation. BG confirmed that there is a further funding application being considered by the True Colours Foundation. BM thanked BG and Together for Short Lives for their work on these applications. She confirmed gratitude to the funders for their support of this group.

It was proposed that part of this funding be used to pay for meeting accommodation, travel costs for those with no recourse to funding from other sources and for administration of the meetings. Others would continue to meet costs of travel and accommodation in other ways. This was agreed.

3.  Presentations regarding research

PL, MBL, Fliss Murtagh gave presentations

These will be circulated with the minutes. Members are asked not to share the presentations beyond members of the group given their confidential nature.

Issues discussed arising from the presentations:

1.  The challenge of building research capacity in the palliative care workforce

2.  The barriers presented by the current approach to research governance

3.  The reality of gatekeeping on the part of clinicians, particularly in research related to children

4.  The degree to which palliative care research is any harder than any other area of healthcare

5.  The relationship between research on children’s palliative care and research on children with complex care needs. These two worlds need to come together

6.  The importance of collaboration beyond our sector – working more closely with other disease groups

Reflections on the morning’s presentations made by SP included:

·  Research –as a pillar of palliative care

·  The difference between research and audit and evaluation

·  Research is not advocacy. Both are important and research should underpin advocacy.

·  Palliative care research in the UK is too slow to be useful to policy makers

·  Research is too bureaucratic in the UK – particularly around research ethics and NHS governance. This makes them economically unviable

·  There isn’t enough focus on impact as researchers. Greater clarity is required about what information mobilization is and how to achieve it

·  We haven’t done enough to build critical mass around research – drawing on training and peer learning. Researchers need to work in teams. It would be good to look to Belgium and the Netherlands to assess their levels of investment.

·  Leadership around palliative care research and particularly in palliative medicine is weak

·  The speciality is probably not competitive enough

·  Larger studies, moving beyond descriptive studies are required. Programmatic development would be helpful. The German government has established programme grants which span specialties beyond palliative care. this is a model to be considered in the UK

·  This needs to be complemented by some funding for some blue skies research to look at questions prior to issues being identified as a problem

SP then reflected on the potential work of this group to advance the research agenda and suggested the following:

1.  Working to the agenda developed by the James Lind initiative

2.  Advocate for more research funding, and specifically large pots that support programmatic work. Capacity building could be part of this

3.  Put pressure on researchers to create usable reports. Consider lay summaries

4.  Consider development of policy guidelines, drawing particularly on high impact publications.

5.  Consider awarding an annual prize to UK researchers – to gain media interest

Comments made by the group in response included:

·  Being much more outward looking in relation to funding, partnerships and similar.

·  Some funding already exists eg Horizon 20:20 funding. The UK is not drawing down on this as much as other countries in Europe for Europe wide issues

·  The value of health literacy in supporting research priorities

·  Considering how palliative care research contributes to bigger and broader issues – including global health

·  Work planned by Hospice UK to build capacity in hospices around research in partnership with others; it could draw on the learning of others who have done similar work such as Marie curie who confirm the value of placing coordinators and similar in academic centres

·  Leverage is possible for hospices including funding and support available for research active hospices

·  Some overarching areas of interest between children and adult services exist, for example around when people make decisions and how, and health literacy. Also the impact of bereavement (including in childhood). The focus needs to be much broader than previously; ambition needs to be greater

·  The value of bringing together a variety of work around priorities for research. A “state of the nation” review that is communicated across the sector may be useful with a coherent voice. The recent Lancet Cancer Commission provides such as an example.

·  Opportunities exist to provide summaries around research undertaken in palliative care. This would need to be generated by an academic centre, with funding from a variety of sources

4. Feedback from the five nations.

Heather Weir, Northern Ireland

NI Hospice representatives had had a meeting with the First and Deputy First Ministers recently to discuss the launch of the Children’s’ Palliative and End of Life Care Strategy for Northern Ireland and several other matters. In terms of new announcements which will impact upon the mixed economy health and social care system in NI, HW made reference to the recent statement by the Minister for Health regarding the plans to disband the Health and Social Care Board. HW shared that there was a growing sense of uncertainty as the Department hasn’t indicated what the plan is, how commissioning of services will be conducted in the absence of the HSCB and which functions of the Board will move to the Department and which functions will move to local Health and Social Care Trusts

HW went on to confirm that the 17 Integrated Care Partnerships (ICPs) have been given funding and mandated for an additional 12 months up to the end of 2017. These ICPs are charged with addressing chronic disease management in the community. Their membership reflects the mixed health economy including public, community and voluntary sector representatives working together with primary care GPS, Pharmacists and HSCTs’. Referring to other relevant events HW highlighted the Marie Curie policy hack which focused on compassionate communities and the NCPC regional event focusing on palliative care for older people including dementia. Concluding HW made reference to the HSCB investment in Project Echo NI which is piloting 5 ECHO clinics, two of which are focused on supporting nursing homes and carers. HW confirmed that the NI Hospice is now the licensed European Project ECHO Super Hub and future opportunities to create more UK Hubs was being explored.

Update on Ambitions report from JC

JC introduced the Ambitions report, developed by a group co-chaired by JC and Bee Wee. It was based on collated evidence regarding what people want and covering ambitions related to children as well as adults and has been disseminated via networks including health and wellbeing boards. Great feedback has been receviedd from statutory and voluntary bodies. The next step is to ensure its principles are integrated into plans and practice, including commissioning. It was suggested that the group who had led this work could help disseminate any outcomes from the leadership collaborative.

Feedback from PL, Republic of Ireland

PL reported on clinical care progammes with strong links to the Ministry and government departments and the political agenda. Advance care planning is an area for further development with no legislative mandate currently. The All Ireland Institute works across the whole of Ireland. Funding is available for the next five years to support the work of the Institute which will focus on three programmes of work – integration of policy, practice and education, how the institute engages with the specialist palliative care community and enhancement of work around public engagement. The Institute has moved to a partnership model in its organisation.

Feedback from MH – Scotland

Context – Scotland is entering another pre-ballot period with Holyrood elections due in May. There is a lot of pressure on acute services heading into the winter and GP workforce issues are also prominent. April will see the “go live” of Integration Authorities. These bring together NHS Boards and Local Authorities. All palliative care services (except babies, children and young people) are devolved to the Integration Authorities. Local Council budgets were hard hit and NHS budgets increased a bit in the recent expenditure review.

Policy – SPPC’s report Grasping the Nettle;- what action can we take to improve palliative and end of life care in Scotland? was published at the beginning of November. The Health and Sport Committee’s report on PEOLC was published just afterwards. the new Scottish Government (SG) Strategic Framework for Action on Palliative and End of Life Care has now been published. I would be interested to hear what people think of it. SPPC’s report Grasping the Nettle;- what action can we take to improve palliative and end of life care in Scotland? was published at the beginning of November. A report by the Scottish Public Health Network (ScotPHN) on Public Health approaches to Palliative and End of Life Care is due any day.

As a result of the Holyrood inquiry and the SFA the profile of peolc is higher than it has been.

There is some excellent and innovative work going on across settings.

To Absent Friends, a people’s festival of storytelling and remembrance ran for the 2nd time from 1-7 November. Evaluation is under way, and it seems that:- there was more activity; that people and organisations who took part in 2014 came back in 2015; that people and organisations that took part in 2015 are keen to take part again; that there was a breadth of demographic reach (primary school to very old, minority ethnic groups, affluent to socioeconomically deprived; socially excluded groups took part (people affected by dementia, by HIV/Hep C, people bereaved by suicide, people bereaved by drugs and alcohol. There were many different ways to participate, with people adapting and creating approaches which suited different preferences and circumstances.

Feedback from MM - Scotland

The new Strategic Framework for Action – palliative and end of life care due to be published on 18 December will be inclusive of all ages including babies, children and young people 0 to 25. This is a significant step forward for children’s palliative care. The recent parliamentary inquiry into palliative care in Scotland ‘We need to talk about palliative care’ published on 25 November was clear about the importance of recognising the difference between child and adult palliative care and ensuring services were available to meet their needs.

And on 4 November the University of York published The ChiSP Study - research funded by Scottish Government and commissioned by CHAS which identified the number of children in Scotland and their palliative care needs. This research was referenced by the parliamentary inquiry and informed the SFA-PEOLC..

Feedback from VS – Wales

The Bevan Commission has been established to look into health services in Wales. This includes an end of life care review, the outcomes of which are going to the minister on the 10th December. Funding allocated for improvements in hospice care in 2012 has been incorporated into the healthboard allocations. Further funding has been allocated for hospice activities around hospice at home and education. VS described a recent report by Ty Hafan about palliative care needs of children and young people in Wales. She is happy to forward papers to members of the group at their request

Feedback from England

Claire Henry has sent an update. See attached.

5. Issues of pertinence to group members.

Within a confidential context, members talked about the challenges and opportunities related to their work, including:

1.  International engagement

2.  Education for professionals particularly around difficult conversations –EC4H, ACTION

3.  Establishing a different culture of care

4.  Drug wastage and related cost savings

6. Possible ideas for the future

Group members gave thought to areas of potential work on the part of the group that would add something unique to national issues related to palliative care including:

1.  Development of a collection of summary papers regarding key pieces of research to make research findings more accessible

2.  Reversing the current costly process by which drugs are destroyed if unused

3.  a statement similar to the lancet cancer commission summarizing the current position around palliative care research monies, activities and gaps – for children and adults

7. Action proposed before the next meeting

1.  MBL, with possible input from PL, SP, and perhaps Fliss Murtagh to draw together a draft statement around the state of palliative care research for review and development by the group

2.  RT, AB and HR to consider ways in which we might tackle drug wastage in palliative care

3.  Members to give thought to any particular areas of research that could benefit from being translated into virtual/hard copy summaries at some point in the future

8. The way forward for the group

BM proposed an opportunity for face to face meetings at least twice a year – perhaps for a shorter time on a single day.

Other members agreed that the group was useful, but a question was posed about whether the meeting was a support group or a group focused on outputs and outcomes. Members agreed that it should be focused on action, alongside support. This should be reviewed in a year’s time

Regarding membership – a question was posed about whether Fliss Murtagh be invited to join the group. It was agreed that she would be a valuable addition. An outstanding question exists regarding representation from Wales and Welsh hospices given the competing demands on VS’s time.