London Dementia Clinical Leadership Group meeting Wednesday 10 May 2017, 15:00 to 17:00 NHS England (London), Skipton House In attendance Dr Juliette Brown (JB) ST5 General Adult and Older East London NHS Foundation Adult Psychiatry Trust Dr Georgina Charlesworth (GC) Strategic and Clinical Lead for North East London NHS Older People s Psychological Foundation Trust Services Laura Cook (LC) Quality Improvement Manager London Dementia Clinical Network Professor Siobhan Gregory (SG) Head of Quality North West London NHS Improvement Consultant Psychiatrist and South London and Maudsley NHS Dr Dan Harwood (DH) Clinical Director Foundation Trust (Chair) Clinical Director London Dementia Clinical Network Fern Howard (FH) Stakeholder Relations Manager Alzheimer s Society Dr Jeremy Isaacs (JI) Dementia Clinical Lead St George's University Hospital s NHS Foundation Trust Sian Jones (SJ) Senior Project Manager UCL Partners Ellen Nelson (EN) Project Support Officer UCL Partners Katie Nichol (KN) Project Manager London Dementia Clinical Network Malti Varshney (MV) Associate Director London Clinical Networks Apologies: Dr Nerida Burnie, Rebecca Jarvis, Bernadette Kennedy, Dr Raj Kumar, Tim McLachlan, Dr Sujoy Mukherjee, Dr Cianán O Sullivan, Laura Stuart-Neil, Simon Williams Item Details Minutes 1.0 Welcome and minutes from the previous meeting 2.0 2.1 2.1.1 Workstream updates Effective diagnosis Clinical Lead, Dr Jeremy Isaacs (see slides 6 to 12) Memory Assessment Network - A network meeting took place on 15 March 2017. Members heard from the Alzheimer s Society on a Dementia in London prisons project and JI presented results from a second round of clinical audit. - The next meeting is scheduled to take place on 14 June 2017. Confirmed presentations include; research project on using video recording and conversation analysis in diagnosis giving and shared decision making on mild to moderate dementia cases, guidance on history taking relating to alcohol, the Herbert Protocol from the Metropolitan Police and feedback from face to face visits with memory services across London. 1
2.1.2 2.1.3 Research A self-assessment research ladder is in development. The idea is for memory services to self-assess themselves against a level of research activity. This will provide a picture across London. The self-assessment is less concerned with the type of research activity, but rather more about the memory service environment and whether it is conducive to promote research. Memory service audit results 590 referrals, of which 502 were seen, ranging from 39 to 68 per service. Headline results as follows: The average time from referral to diagnosis varied from five to 23 weeks. The proportion of patients deemed not to require brain imaging varied from 6% to 43%. The proportion of MRI and CT scans performed within 30 days varied from 8% to 75% and 0% to 95% respectively. The proportion of patients diagnosed with MCI varied from 3% to 28%. Among patients diagnosed with dementia, the proportion with Alzheimer s disease was 25% to 77%, vascular dementia 3% to 22% and unspecified dementia 0% to 26%. The proportion of patients with an indication for a cholinesterase inhibitor or memantine who were offered treatment varied from 43% to 100%. There was marked variation in referral rejection rates, location of initial assessment, choice of imaging modality, use of neuropsychology, identification of treatable psychiatric illness, provision of information about research and access to Cognitive Stimulation Therapy. There were one or two outlier services; however significant variation in practice would remain whether or not those outlier services were to be excluded from results. In light of these results, two clinical standard sub-groups of the Effective Diagnosis working group will be established: 1. Guidance on neuroimaging there was significant variation in the number of patients deemed not to require brain imaging. Regional guidance will support reducing this variation in clinical practice. 2. Care pathways for non-dementia diagnoses- (including MCI). 2.1.4 Memory Service Pathway Project Meetings have now been held with 17 memory services. There is significant variation in practice between services. Key findings highlight the importance of optimising the current workforce, the use of digital, lean triage processes and imaging contact and DNA avoidance. The next steps will involve creating a tool kit to guide services on how to implement efficient pathways and offering 1:1 meetings with services to discuss their local pathway. Views will also be gathered from service user groups. There was a discussion about the change management aspect of the project. At the stage of implementation, the group recommended involving trust transformation leads to help support services implement any changes. SJ said that UCLP run change management courses. Action (1): SJ to send CN details on relevant courses. 2
2.2 2.3 Dementia inequalities update from LC (see slides 13 to 16). A resource pack bringing together the work across London on BAME populations is in development. The resource has been mapped to language and religion and includes information on service initiatives, leaflets, awareness videos and a variety of cognitive tests. The Alzheimer s Society has agreed to create a page on their website which will contain the information. It is hoped the website page will be available within the next two months. The next stage of the project will include promotion of the website and resources to providers, commissioners and community groups across London. Ideas from the group on promoting the project followed: 1. FH said that bringing community groups together and holding awareness events is a successful method in promoting information on dementia. 2. Memory services testing resources a great idea in principle, but whether services have capacity to do this is questionable 3. Promote through the Academic Science Health Networks (AHSN s). 4. Promote through local Dementia Action Alliances in London. 5. UCL have patient engagement funds for events and activities. 6. GC said that she has a PhD. student supporting her from June 2017 who is particularly interested to support BAME projects. Action(2): LC to link with GC regarding contact details of student. Acute Hospitals Clinical Lead, Professor Siobhan Gregory (see slides 17 to 20). Update: Guidance on nutrition and carer involvement in first 48 hours of care is complete. A peer review pack has been developed and sent out to participating trusts. To date, peer review (observational form) has been completed in two hospitals. The visits take approximately two to three hours to complete. During the visit discussions with dementia leads, patients and carers and the clinical director for emergency medicine has taken place. Challenges: Time constraint - Directors of Nursing or their deputy are leading on this work and carrying out visits. Difficult to keep the project on track due to busy demanding jobs within their organisation. Emerging themes: Place of residence evident that many staff in A&E departments do not know where patients usually reside. Inadequate nutritional care. The group discussed dementia friendly wards. Dementia-friendly wards are recent developments to improve care for patients with dementia in acute hospitals. JI talked on the dementia friendly ward project which has taken place at Nottingham University Hospital. The project measured the impact of a designated dementia ward on patient outcomes such as length of stay and re-admission rates. Results showed no significant effect on outcomes when compared to patients with dementia on non-designated wards. The group also discussed the spread of John s Campaign across acute hospitals in London. There appears to be varying degree of uptake and the main barriers to fully engaging with the initiative are the necessary governance requirements. 3
2.4 GP Leadership update from LC (see slides 21 to 25). Update: Telephone interviews with 11 GP Leads. GPs expressed key challenges as care planning, diagnosis rates and memory service access waiting time. Initiatives have included coding clean up, dementia link workers and memory service referral audits. Many GPs said that care planning post diagnostic support, behaviour that challenges and medicine management are key educational needs. Discussed dementia care planning at the mental health GP leads forum in April 2017. Set up Yammer online forum for dementia GP leads. Planned activity: Expand workstream to include primary care leadership. Care plan audit. Learning event potential topics include, care planning, post diagnostic support, behavioural and psychological symptoms and medicines management. Group comments followed: - GC suggested disseminating guidelines produced by The British Psychological Society on managing psychological and behavioural distress in people with dementia. They include a useful stepped care model to assist commissioners and providers of care when considering how to care for people with dementia with challenging behaviour. - MV proposed involving CCG pharmacy leads to support facilitate GP education sessions on medicines management and optimisation. 2.5 Care home dementia awareness training project (see slides 26 to 30). SJ provided an update. UCLP (NCEL region, target of 24 care homes): 40 people across 24 care homes trained using train the trainer approach. 18 support sessions have taken place with evaluation data collected. Approximately 105+ care home colleagues trained HIN (South London region, target of 12 care homes): 14 homes involved. 5 observations have taken place, with others due to take place shortly. Future planned activity: Continue support sessions with those care homes that have not currently held their first training session. Interviews with staff are currently being conducted across NCEL. Share programme and lessons learned through presenting at conferences and joint reporting. Potential routes for dissemination: 1. London Dementia Commissioners Network. 2. Social services care home forums in London. 3. E-learning for Healthcare. 4
3.0 3.1 3.2 3.3 3.4 National update (see slides 1 to 5). DH provided a national update. Achieving Better Access Implementation Guide The Achieving Better Access Implementation Guide for memory services remains unpublished. CCG Improvement and Assessment Framework NHS England is considering adding further dementia indicators to the framework following suggestion from a group chaired by Jeremy Hughes, Chief Executive of the Alzheimer s Society. These are likely to include: 1. Emergency admission rates 2. Re-admission rates. 3. Anti-psychotic prescribing. How the indicators will be measures is not clear at the moment. Dementia diagnosis prevalence calculation April 2017 diagnosis rates will be calculated using the new methodology. April 2017 rates will be released on or around 12 th May 2017. London dementia diagnosis rate The latest diagnosis rate for London is 72.4%. The Clinical Network team will continue its programme of meeting CCG s to offer individual tailored advice on improving diagnosis rates. 4.0 Sustainability and Transformation Plans (STPs) (slides 31 to 36) LC presented information on how improvement within dementia care features within the five STP plans in London. Currently STPs present planned improvement without detailed delivery plans. The common themes within each plan are; 1. Maintaining/meeting diagnosis rates. 2. Meeting the 2020 6-week access standard. 3. Dementia friendly organisations, staff and communities. 4. The role of intermediate care (or similar models) in the shift from hospital to community based care. The management team for the Clinical Networks is currently discussing options to employ and maintain effective communication with the STPs in London. 5.0 Service user and carer involvement and engagement At the last meeting in January several engagement options were presented to the group. DH has since talked to Tim McLachlan, London Operations Manager for the Alzheimer s Society on the feasibility on the establishment of separate shadow patient and carer groups. FH said that meeting room availability at the new Alzheimer Society office is an issue. KN suggested contacting the London Fire Brigade members of the Pan-London DAA group as they recently offered meeting room space free of charge to other members. Action (3): CN team to talk with Tim McLachlan further. 6.0 Dementia Friendly London A briefing paper was submitted to Sadiq Khan, Mayor of London at the end of April 5
2017. The paper outlined four ambitions, to be achieved by 2020; 1. Every London borough will be signed up to the Dementia Friendly Communities Recognition Process 2. 2,000 dementia-friendly organisations and businesses in London. 3. 5,000 Dementia Friends in London. 4. Meaningful involvement of people with dementia and carers will be embedded in shaping London s future. It is hoping that a summit event will take place at City Hall on 20 November 2017. 7.0 7.1 7.2 Any other business Retirement Simon Williams, Director of Community and Housing, London Borough of Merton and Lead for ADASS on dementia has announced his retirement. Simon will retire at the end of July 2017. Unfortunately Simon was unable to make the meeting today. Simon has said that Bernie Flaherty, Director for Adult Social Services at Harrow Council has agreed to pick up the ADASS lead role for dementia going forwards. Thanks to Simon for his support of the Network. Action (3): DH to contact Simon Williams. Action (4): LC to contact Bernie Flaherty. Dementia Awareness Week 2017 Dementia Awareness Week 2017 is scheduled from the 14 th May. The Alzheimer s Society is holding their annual conference and gala dinner on the 18 th May. The new flagship conference sees the merge of research and policy. 8.0 Date of the next meeting Tuesday 05 September 2017 15:00 to 17:00 NHS England, Skipton House 6