Summary of findings – stocktake of post-diagnosis support across Y&H Penny Kirk

Aims Provide a tool to help commissioners stocktake current provision of post-diagnostic support, identifying areas where there is still work to do Identify common issues/gaps across Y&H to inform work programme Identify examples of good practice for sharing

Limitations Questionnaire based loosely on DH survey of post-diagnostic support circulated in 2013 Commissioner only view – providers, service users and carers may have a different perspective Asked about availability, rather than uptake or awareness Rating scale (Ahead of the curve, work in progress, work yet to start, not planning to do) is subjective and intention was not to use to ‘rank’ areas by their progress

Responses There has been a return from 19 out of 22 CCG areas Returns were completed by a mix of CCG and LA commissioners. Some had input from 3rd sector and memory service providers Assumption that no response indicates there is work to do Collated responses used as an overall marker of progress across the patch and to identify where we are likely to find good practice examples Responses shown as % of respondents who selected each response

Categories within PDS grid Access to information Choice and Person-centred care Future Care Planning Service Planning & Development

Access to information Patients and carers are actively informed about support available Online information available

Access to information Written information provided Named key-worker/case manager Publically available PDS pathway

Choice and person-centred care Access to both individual and group support options Access to peer support Support for carers

Choice and person-centred care Support to manage BPSD* Support for younger people Access to psychotherapy e.g. CST* Support tailored to the individual Support for people with MCI * No areas rated themselves as ahead of the curve

Planning for future Future decision making/ future care

Service planning & development Service user and carer involvement/engagement (4 areas ahead, 1 yet to start) Monitoring / evaluation of service impact* Representation of minority groups within services

Findings Appears to be wide variation in current support offer Great potential for rapid improvement by sharing learning and resources across the patch, using and strengthening existing community of practice Lots of examples of innovative practice – many areas still working on how to evaluate impact, risk that innovation gets ‘lost’

Next steps Support sharing of practice, lessons learned, resources –focus on those areas where most work to do Contact other SCNs re work happening elsewhere Triangulate data from Sheffield study (Memory services) Offer from York Uni to attend next RDL meeting to discuss service evaluation and measuring impact on outcomes DH expected to run an updated survey later this year How to ensure service users and family carers have ongoing opportunity to give their views & influence PDS provision

SCN Update

National review Review of SCNs, AHSNs, LA and NHSIQ is ongoing Coherent strategy for leadership development and improvement capability Aligned and developed in parallel Focus on delivery of 5YFV NHSIQ will cease to operate AHSNs will coordinate local improvement activity

Initial Recommendation 8 Establish a central ‘One stop shop’ Provide access to shared improvement resources – common requirements, e.g: Research and evaluation advice Spreading learning and best practice Connecting people across systems Access to improvement tools, on-line development (e.g. MOOC) Name, hosting and funding arrangements to be determined in stage 2

Initial Recommendation 11 Clinical Senates, Strategic Clinical Networks (SCNs) and AHSNs should continue Have an important role to play in supporting change across health and care system However, changes needed to: Clarify roles Strengthen accountability and governance Ensure relevance to local and national priorities Secure appropriate alignment between bodies

Role of Strategic Clinical Networks Continue to be SCNs in four current priority areas Should be renamed Clinical Networks Could form new networks to support local priorities Role: Support health systems to improve health outcomes of their local communities by connecting commissioners, providers, professionals, patients and the public across a pathway of care to share best practice and innovation, measure and benchmark quality and outcomes, and drive improvement

AHSNs and Clinical Networks Should be streamlined Alignment of business plans Operate as single support entity for their member commissioners, providers and professionals (further discussion and development to take place in Stage 2)

SCN Update Work programme has been updated following last RDL meeting Will be circulated for comment / feedback Focus on achieving and maintaining 67% will continue

Implications of population base change

QOF and DES resources Webinar Friday 15th May, 11.30am – joining details in April bulletin Sign up to primary care dementia resources varies Comprehensive QOF template now available DES search being developed for new requirements Year of Care version of QOF template on its way 15/04/2019

NHS Airedale, Wharfedale and Craven 2 NHS Barnsley NHS Bassetlaw NHS Bradford City NHS Bradford Districts 4 NHS Calderdale NHS Doncaster NHS East Riding of Yorkshire 5 NHS Greater Huddersfield NHS Hambleton, Richmondshire and Whitby 3 NHS Harrogate and Rural District NHS Hull NHS Leeds North NHS Leeds South and East 1 NHS Leeds West NHS North East Lincolnshire NHS North Kirklees NHS North Lincolnshire NHS Rotherham NHS Scarborough and Ryedale NHS Sheffield 13 NHS Vale of York NHS Wakefield

Other work Joining up care plans Symptom Management guidelines – last year of life GP mentors CANTABmobile report Quality Improvement Awards Sharing Good practice event – 25th June MAS event being planned – commissioner invite