London EOL Clinical Network

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1 End of Life Clinical Leadership Group Minutes Wednesday, 18 January 2017 ( ) Present: Dr Caroline Stirling (CS) Clinical Director End of Life Clinical Network London Region. Consultant in Palliative Medicine Brian Andrews (BA) Ben Rhodes (BR) Chaplain Dr Charles Daniels (CD) Finella Craig (FC) Consultant in Paediatric Palliative Medicine Janice Richards (JR) EOLC Commissioner JJ Nadicksbend (JN) Independent facilitator/advisor and Lead Facilitator John Powell (JP) Adult Social care Kate Heaps Kheelna Bavalia (KB) Kimberley St John (KSJ) CNS Palliative Care Lucy Minden (LM) GP Paul Trevatt (PT) London EOLC Clinical Network Lead Selina Frater (SF) London EOLC Clinical Network Senior Project Manager Apologies: Dr Andreas Vercueil (AV) Intensivist Briony Sloper (BS) Deputy Director of Nursing and Quality Hillary Shanahan (HS) Compassion in Care Co-ordinator / District Nurse Jayne Kennedy (JK) GP Ollie Minton (OM) Central & North West London NHS Foundation Trust Patient/Carer Representative Kings College Hospital NHS Foundation Consultant and Lead Clinician IN LNWHT and Medical Director of St Luke s Hospice Great Ormond Street Hospital Waltham Forest CCG Difficult Conversations. Greenwich and Bexley Community Hospice NHS England Guy s & St. Thomas NHS Foundation Trust Lambeth CCG NHS England NHS England Kings College Hospital NHS Foundation London Ambulance Service Central London Community Healthcare NHS Trust Lambeth CCG St George s, University of London

2 Macmillan Consultant, Palliative Medicine Sharon Cavanagh (SC) Macmillan Lead for Living with and Beyond Cancer and Allied Health Professionals Steve Wanklyn (SW) Lead Pharmacist Palliative & EOLC Sue Robinson (SR) Community Matron Palliative/ End of Life care London Cancer UCLPartners Guy s & St. Thomas NHS Foundation Trust Central London Community Healthcare NHS Trust 1 Welcome and introductions CS welcomed attendees to the meeting and apologies were noted. 2 Review of previous minutes and actions Action 1: The minutes from the meeting held on 26 October 2016 were confirmed as accurate. Action 2: CS to have a conversation with AV to discuss the future of the Engagement and Social Strategy group. - Complete joint meeting with ESS and Enhancing physical and mental wellbeing workstream. Action 3: Working groups to identify relevant links with other groups as part of drawing up their action plan. - Discussed as part of the workstream meetings. Action 4: Letter to be prepared explaining the Network, its workstreams and work plan and how further information can be obtained and contact details. - Action to be picked up as part of the workstreams. Action 5: CS to invite CLG to join a workstream, and to ask for a chair / co-chair volunteer - Complete Action 6: Each workstreams to meet twice before the next CLG meeting.- Workstream updates are an agenda item. Action 7: CS to circulate latest version of ReSPECT proforma (not for wider circulation) - Complete 3 National Update Please see attached national update Funding has been identified for 17/18 and 18/19. EOLC is not a mandated network, funding will be devolved through the regions. The network is now secured for 2 years.

3 Regional Roadshows Three regional roadshows have now taken place they were well attended and the evaluations have been positive. Care Co-ordinators It was noted that none of the suggested models for the care co-ordinator role involved a non-clinical person. Ambitions self-assessment tool Difficulties identified when trying to score in isolation The tool takes a long time to complete The tool is a very comprehensive document There was a feeling that the tool needs to be part of something else and provide some understanding of how completing the document will drive changes. The tool could be used as part of strategy development for an organisation. There were questions around how do organisations maintain a quality service given the extra pressures they are facing. It was noted that the ambitions document doesn t highlight priorities. Communications around how the ambitions toolkit could be used and the benefit of doing so would be useful. The framework can sometimes be used as a stick instead of a tool for dialogue. The assessment tools don t address the real constraints of structure and commissioning health and social care. As a network thought should be given to how local level structures can be influenced. Some of the themes are recognised in the STPs, it would be useful to identify a local health economy that has done this well so that it could be used as a model. The tool is something that will be discussed at the EOLC event in February. Action: CLG members to consider key points around commissioning in London to discuss within workshop at the EOLC event on Action: CLG members to further cascade event/workshop s that are sent out. Action: SF to speak to Andrea Marlow about sharing the patient empowerment video with the other networks. 4 ReSPECT Update The ReSPECT form has been updated and now includes the ReSPECT logo created by ZPB. A suite of material had been developed to accompany the form including: Poster FAQs Patient Information Leaflet (patient/parent/carer/young person) Clinicians guide Implementation guide for organisations 2 PowerPoint packs (Introductory material and teaching for clinicians)

4 Policy documented created by the London group Talking head style videos (clinical experts) PPV campaign videos of patients/carers to engage the public. Action: CS to circulate the supporting documentation The documents will be uploaded to on 28 February 17, there will also be a BMJ article. The NHS is supportive of the release of the ReSPECT form however the document is not mandated. CS has been invited to speak at various conferences about ReSPECT, There are 3 pilot sites located in the Midlands. One Trust in Coventry has started to implement ReSPECT and it has been positively received. Potential London early adopters include the Royal Free, Northwick Park, Chelsea and Westminster and Whipps Cross. The digitalisation and interoperability of the ReSPECT form was discussed. On 7 th December 16 a joint meeting was held between the London Digital Programme, Crisis Care, EOLC, CMC and ReSPECT. CMC matched the content of the care plan onto the ReSPECT document and it is a good match. A working group is being established to look further at making the ReSPECT form interoperable and there is allocated funding to undertake this work. The feasibility study will be completed by the end of March 17. The ReSPECT document will be patient held and Trusts cannot put their logos on the form. It was noted that this is probably the first patient held document for adults so will require a cultural shift. The policy recommends that when a patient moves settings a clinician reviews the ReSPECT form to ensure that the content is still relevant. Communication should recommend organisations looking to implement ReSPECT should talk to their partners from across the locality, including CCGs. An application has been submitted to the Royal College of Nursing Foundation to undertake a QI project in London. Conversations have taken place in the National ReSPECT working group around how feedback will be gathered and disseminated. Messaging must be clear and consistent, It will be important for the Network to know where the RePECT form is going live in London. The Network could then co-host an event 6 months after implementation with early adopters. Information is needed from a social care perspective with education material being disseminated through ADASS. Action: CS to feedback to national ReSPECT group suggestions around communications channels. Action: CS and team to think about Comms ahead of 28 Feb - this should include Urgent and Emergency Care doing a comms release.

5 Action: KH to invite CS or a member of the ReSPECT project working group to present to the London Hospice Group. 5 Updates from CLG working groups Transform experience of EOLC in hospitals and the community The first working group meeting took place on 16 Dec 16. Priorities metrics and materials were discussed. A questionnaire is being developed to send to providers to gain an understanding of EOLC services in London, the questionnaire will cover five key areas: EOLC Leadership Evidence and Information Tools for planning care 24/7 services Out of hours community pharmacy The aim of the research is to understand the local picture and create an STP wide document with evidence, and comparable data outcomes. RMP who are undertaking mapping around SPC services have sight of this work their questionnaire asks for more detailed information in various areas of EOLC e.g. social care, pharmacy, hospice. Enhancing physical and mental wellbeing of the individual AV is the chair of this workstream and the first meeting is scheduled for 26 Jan 17. There is also a legacy Engagement and Social Strategy Working Group that have looked at a variety of areas including digital legacy and communities of practice. The membership of the group is eclectic and the meetings are well attended. From initial scoping it is thought that there may be some overlap between the work of the two groups. Commissioning quality services that are accessible to all when needed The Chairs pre meet has taken place and the first working group meeting is scheduled for 3 Feb 17. The group are considering whether there are any gaps in the membership of the group and highlighted community and social care as areas for further recruitment. A survey is going to be developed to assess the usefulness of the commissioning checklist, whether it has improved the commissioning of services, constraints commissioners face, and to gain a greater understanding of the story around commissioning. It was noted that commissioner remits differ and commissioners very rarely commission the full spectrum of EOLC services. 6 End of Life Care London Engagement Event 22 February 2017

6 The draft agenda was presented to the group. BA agreed to be on the QA panel as the patient/carer representative. Action: CLG members to circulate event invitation to networks. Action: SF to send event invitation Sue Newton Hospice UK, Social Finance and national Pensioners Forum. 7 CLG Membership A discussion took place around the membership of the CLG. The current vacancies were discussed and it was noted that membership should be informed by the working priorities. The CLG membership map by STP shows that there is less representation in NEL and SWL. Community based practitioners e.g. OT/Physiotherapists/Social Workers would align to working groups focussing on hospitals and the community. Recruitment to vacancies will be done through an invitation for expressions of interest. Areas to consider: Bereavement care/counselling/ psychologist Voluntary sector representation Care homes Nurse Care of the elderly U+EC A discussion took place around whether there should be representation from an improvement organisation or whether involvement should be sought for individual projects. Representation could bring constructive challenge in meetings. The resignations of Dr Luke Howard and Jane Eades noted and thanks were expressed for their leadership and support. Action: CS and team to consider how feedback can be sought from constituents at 22 Feb event on the work of the network in relation to the 3 national workstreams. Action: CS/SF to commence recruitment to CLG vacancies. 8 Any other Business CD led a discussion on a KPI requiring 90% of patients to be on epaccs that his team have been given. The current uptake is approximately 30% however the department has better patient outcomes than average. Achieving the KPI would use approximately an hour more clinical time a week with no proven benefit. A CCG KPI was highlighted relating to the CCGs ability to meet Better Care Fund Metrics. Discussions took place around the

7 origins of these KPIs and whether all organisations are subject to meeting the same target. Clarity is needed around metrics and what guidance is supporting them. If the metric is not fit for purpose teams could highlight the flaws in what is being measured and provide suggestions of alternative measures. Date and time of next meeting: Date: 5 April 2017 Time: Location: Skipton House

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