Developing a dementia strategy for York
1. Introduction
A key theme of the York mental health strategy is to ensure that York is both a mental health and dementia friendly city, including a priority to develop a joint strategy for improving dementia diagnosis and support services. Discussions at the Ageing Well Partnership in May 2019 indicated that the dementia strategy sits with the work being undertaken on Age Friendly Communities.
2. Completing the strategy
3. The draft strategy uses the themes of the National Dementia Pathway as a framework for reviewing and redesigning health and social care services for those people with dementia who require specialist services.
· Preventing Well: Risk of dementia is minimised
· Diagnosing Well: Timely, accurate diagnosis, care plan and review within first year
· Supporting Well: Safe high-quality health & social care for people with dementia and carers
· Living Well: To live normally in safe and accepting communities
· Dying Well: To die with dignity in the place of your choosing.
4. The themes that have mainly concentrated the minds of health partners so far in developing the strategy is Diagnosing Well and Supporting Well. The work on dementia-friendly communities is designed to complement the national strategy; creating dementia-friendly communities that support and sustain people in their homes, neighbourhoods, and social networks.
5. What has happened in the last 12 months?
· Early identification, diagnosis, and support
Progress has been made including early identification, raising awareness in primary care, addressing low diagnosis rates and the provision of pre and post diagnostic support, achieved through the recruitment of four dementia care coordinators and a specialist dementia nurse located in GP practices. Diagnosis rates remain low however and reflect a national trend largely due to the pandemic, with many older people told to shield and remain at home choosing to delay their memory assessment.
Managing the backlog of appointments and staff absences due to covid, has had an impact on the capacity of the Memory Service resulting in long waits from referral to diagnosis. The CCG are working with TEWV and primary care to look at alternative pathways to diagnosis and are currently undertaking an audit with TEWV and tracking ten patient referrals to identify bottlenecks.
· Post-diagnostic support
Improving diagnosis alone is not sufficient and people living with dementia and their carers need appropriate post diagnostic support throughout the rest of their life. The CCG commissions Dementia Forward to be the first point of contact for post-diagnostic support from the Memory Service and work is ongoing to establish this as an 'opt-in' service. To support people on their 'diagnostic journey,' referrals can now be made to Dementia Forward for pre-diagnostic support. The 'core' dementia support service provided by Dementia Forward includes a Helpline, Dementia Support Advisors, wellbeing activities and young onset dementia support. This is funded by the CCG as part of a North Yorkshire wide contract. Demand for these services in York has grown significantly and discussions are currently underway with City of York Council to consider their contribution to a sustainable service model.
In addition, the CCG is funding a pilot 'Good Life with Dementia' post- diagnostic programme created by people living with dementia. It offers an opportunity to talk about the implications of a diagnosis; about the future; about close relationships, about dying; about what’s happening and what can help – all done amongst peers.
· Workforce training and learning:
A proposal for a York Learning Network has been developed. This is a facilitated network where all stakeholders can share learning ideas; identify and put in place learning needs through a combination of face to face and virtual meetings, webinars, and facilitated virtual action learning sets. The proposal is being shared with the Humber Coast and Vale dementia steering group and is currently seeking funding.
· Strategy drafting event
An initial series of 'We Will' statements were developed last July . This is very much 'work in progress' as partners respond to the feedback from what people with dementia and their carers have told us from the engagement carried out, outlined below.
· Engagement
In addition to the engagement undertaken by Healthwatch York, the CCG carried out face-face engagement with people at local dementia cafes and carers groups throughout December and January. The findings are currently being collated into a joint report with Healthwatch along with key themes and recommendations. In summary, the feedback reinforces the view that services are fragmented, uncoordinated and with complex pathways across the health and social care system. A lack of accessible, personalised advice and support was highlighted by many. Along with a call for reduced waiting times and improved communication and support following diagnosis, is the idea for a 'physical hub,' providing information and advice along with social and physical wellbeing support, and potentially respite and day centre support.
Personalised care takes a whole-system approach; integrating services around the person including health, social care, public health, and wider services; reinforcing the need for a coherent dementia strategy developed across this wider system.
6. The Humber Coast and Vale Health and Care Partnership Integrated Care System (HCV ICS)
HCV ICS has established a dementia steering group to lead on the development and delivery of a dementia work programme, including understanding dementia care pathway quality issues and associated costs across HCV; from timely diagnosis to dying well and including staffing and workforce issues, non-essential hospital admissions and appropriateness of current residential care provision for people with complex needs relating to dementia. The core membership of this group provides a cross representation of health, local authority, community, and provider organisations. It has been proposed that an ICS dementia strategy is developed, bringing a commitment to consistency of support services across the HCV footprint. It is suggested that such a strategy will dovetail with the dementia strategy for York.