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Answers to Open Letter regarding the Joint Dementia Strategy

Monday, October 12, 2020

In response to our open letter to Mrs Amanda Jupp, Cabinet Member for Adults and Health, West Sussex County Council (previous blog post) we publish her answers to the questions, her introduction and the original questions.

Thank you for your recent email attaching questions from the Worthing Dementia Action Alliance in connection with the recently launched Joint Dementia Strategy 2020-23.

We very much appreciate the invaluable support offered by the Worthing Dementia Action Alliance and are sorry to hear that those who attended the launch were disappointed not to have the opportunity to ask questions.  Tracey Wooldridge and Irene Loft are of course always happy to answer any questions people may have about the Dementia Strategy and welcome any opportunities to do this.  May I suggest that if the Alliance has any further questions, they contact them direct - their contact details are provided at the end of this letter.

The Joint Dementia Strategy is our second strategy for dementia that aims to refresh the priorities of the first version, the Dementia Framework 2014-19.  The motivation for having a Dementia Strategy is to make West Sussex an excellent place to live well with dementia.  The document sets out how we intend to do this and how we can provide the help and support that is needed in order to realise this aim. We were reluctant to re-draft the Strategy to include the challenges of the pandemic as we felt this would have caused a long delay to the launch, at a time when we needed to keep the momentum going. We also believe the Strategy is robust enough to cope with the impact of Covid-19 on both our services and the people in our communities affected by dementia.  All work streams relating to the strategy will of course be within the ever-changing context of Covid-19 and all of its challenges.

DEMENTIA ACTION ALLIANCE QUESTIONS RE JOINT DEMENTIA STRATEGY 2020-2023 together with answers from Amanda Jupp, West Sussex County Council.

1. With regard to 'Diagnosing Well' there is a lot of anecdotal evidence of people being seen by a GP and referred for a scan before COVID who have just been left high and dry:

  • how does that fit in with your Strategy commitment of diagnosing well?
  • How and when are these people going to be assessed and cared for?
  • What changes will you have to make to your Strategy to cope with the ongoing COVID restraints and how will that impact of the diagnosis of dementia"
  • Is it true that diagnosis will be carried out 'virtually?'

ANSWER

Please be assured that nobody seen by a GP and referred for a scan before COVID has been left “high and dry” and the principles of the Dementia Strategy around quality of diagnosis remains the same. Operationally, elements of the diagnostic pathway have had to change in order to ensure the safety of this cohort of people who are the most likely to be adversely affected by the virus.  Everyone referred to the Dementia Assessment Service has been given the option of either a virtual or face to face consultation with most people choosing the virtual option.  Diagnoses that are provided virtually are of the same quality as those provided face to face, tools are used that are continually being tested to ensure they are sufficiently robust.  Virtual diagnosis can take longer to carry out and unfortunately this is impacting on waiting times, however, there is a plan in place to increase capacity for assessments and diagnoses in order to be able to gradually catch up with the backlog.

2. The Strategy includes provision for 'Supporting Well' those living with dementia and their carers:

  • WSCC have indicated that the appointment of Admiral Nurses is still under review but isn't now a pertinent time for Admiral Nurses to be funded in West Sussex when so many families and carers are at crisis point?

ANSWER

There is an Admiral Nurse service that is commissioned in the north of the county.  This is an exemplary service that provides high quality care for a limited number of carers but the outbreak of Covid-19 means we need to be able to support a wider number of people.  The option of extending this service to the rest of the county is always being considered but we continue to meet the needs of carers in the south through a range of services including: Dementia Advisers and Support Workers, Dementia Matrons, Primary Care Networks and Carers Support West Sussex, to name but a few.

3. With regard to the Strategy for 'Living Well':

  • How is WSCC proposing to fund their commitments for tailored care/support for those living with dementia?
  • Are they assuming that in order to cope with the high cost of such a commitment they will be able to call upon the voluntary sector and organisations such as the Alzheimer's Society, Dementia UK and the DAAs to pick up a lot of this 'living well' support?

ANSWER

Ensuring we continue to improve services to meet the needs of people affected by dementia is a high priority for us and we need to be able to meet the rise in demand. We therefore need to redesign and transform services to focus resources on keeping people independent for longer, enabling people to reduce the modifiable risks of dementia, supporting family and friend carers in their caring role and on facilitating a community-led approach to enabling people to live well with dementia. In addition to this, we are focusing on a number of gaps identified in the pathway and how we might address these gaps with any additional funding, should this become available in the future.

We very much value the support we receive from our third sector partners and without this support it would be impossible to provide the tailored care and support already experienced by people living with dementia and their family and friend carers.  We appreciate that there is still work to do as to how we ensure people with dementia are supported, particularly during these very difficult times, but we are committed to building capacity and services wherever possible.

4. The Strategy mentions a commitment to supporting people in meaningful activities:

  • With Many day-care facilities and respite provisions in the Worthing area either having closed permanently or running at 50% capacity, how is WSCC planning to meet its Strategy commitment to both those living with dementia and their family/friend carers many of whom require access to much needed respite?

ANSWER

Carers need regular breaks from their caring role and the outbreak of Covid-19 has greatly impacted on their ability to access respite opportunities.  The need to ensure the most vulnerable people in our community are kept safe is paramount to us and you will appreciate we have had to exercise caution when looking at reopening services.  We are however pleased to see that many groups and clubs are starting to start up again but appreciate this can often be at reduced capacity so as to conform to Government guidance. We are of course actively supporting our providers with managing a safe return. 

Although there have been issues with accessing care home respite during ‘lockdown’, I understand many homes are slowly returning to normal and TuVida (formerly Crossroads Care South Central) and most domiciliary care organisations are able to provide respite by way of care and support at home if this is appropriate.

5. The Strategy states that people should be supported in 'dying well'.

  • How does WSCC envisage the Strategy realistically supporting those in care homes to die well (and also their family/friend carers) whilst there are severe restrictions to both access to the homes and visiting loved ones in some establishments?

ANSWER

Our vision for End of Life is for people with dementia to experience high quality, compassionate and joined-up care and for families and carers to be able to access timely co-ordinated support before death, at the time of death and subsequent bereavement.  The pandemic has obviously impacted greatly on our care homes, who work tirelessly to protect the most vulnerable in our community.  In view of this, we have looked to support our homes as much as possible through, for example, Admissions Avoidance teams, Community Nurses and Dementia Matrons who support with end of life medication and advice, despite the restrictions.  In the south of the county Echo, the End of Life Care Hub, offers phone support to care homes caring for residents at the end of their life.  If the Hub feels that the home requires more support it will link in with St Barnabas Hospice to provide this.

There is concern about how we ensure families and friends stay connected to their loved ones in care homes.  Our Director of Public Health gives a regular assessment of whether visiting is likely to be appropriate within the local authority, or local wards, and with the exception of end life, can move to stop visiting if an area becomes an ‘area of intervention’.  National guidance suggests that all organisations should put in place resources and support to ensure that, wherever practicable and safe, loved ones are afforded the opportunity to be with a dying person, particularly in the last hours of life.

Care providers should also consider how digital solutions may help to connect residents to their loved ones and are being encouraged to take advantage of time-limited connectivity deals and apply for a tablet device so that families can stay connected.

Our partner, Carers Support West Sussex, has been exploring ways of how it can support care homes and in May and July they sent direct mail-outs to 380 homes offering their support to residents’ family and friend carers.  Unfortunately, there has been a low response, mainly due to the amount of pressure the homes are currently under.  Carers Support West Sussex is however continually looking at different ways of communicating the ‘Think Carer’ message to care homes.

There is a widespread recognition that the experience of bereavement is likely to be more difficult during the COVID-19 pandemic.  The Sussex Bereavement Helpline, run by a team of experienced support workers, is able to provide families with key information and guidance about the tasks that need to be completed after a death. The Helpline can also offer information about sources of help and support for bereaved families and friends. The Sussex Bereavement Helpline is available Monday to Friday from 8am to 5pm.

6. If the launch of the Strategy in August was a public launch it didn't appear to be very public.

  • How will those living with dementia, their families and carers be made aware of the Strategy and understand what services are supposed to be available to them and, more importantly how they access them?

ANSWER

The Dementia Strategy was launched on the JSNA website at the end of August with a view to running extended media activities during the month of September.  These have included press releases, social media posts, partners’ newsletters and websites, presentations to support groups and widely distributed mail shots. The plan is for the Strategy to also sit within the NHS Winter Pressures Campaign which will run from October to December with a view to going into Spring 2021.

We are pleased to hear you plan to publish the Strategy on your website.  Please let us know if you feel there are any other ways we can promote the Strategy more widely.

7. Finally, is the WSCC planning to support financially the local Dementia Action Alliances so that they are able to continue with their vital role in making communities dementia friendly. Or is that not part of the Strategy?

ANSWER

The Strategy highlights the need for a whole community response to dementia and this is demonstrated through the excellent work of Dementia Friendly Communities. The Strategy also points out that there is a need to build capacity and provide a co-ordinated response to ensure Dementia Friendly Communities are sustainable going forwards.  Commissioners are currently focusing on how resources are utilised effectively at this time and will be looking at how any potential funding can be used to support the dementia pathway and improve the experience of people living with dementia and their family and friend carers.  Dementia Friendly Communities is a key part of the dementia pathway and this will of course be included in any potential business case.

You can be assured that we are working closely with all our partners, both statutory and in the voluntary sector, to ensure that appropriate support is available to people living with dementia as well as their families and friends at this particularly difficult time.

We remain committed to pursuing improvements in dementia services and one of the ways we do this is through actively listening to our local population and through important feedback like this. This enables us to work closely with our local service providers and communities to ensure delivery of both effective, compassionate and evidence-based dementia care. It is our most sincere hope that with this open way of talking about what some of the particular challenges are and understanding better how these are felt by people living with dementia and their carers, we are better equipped to manage the challenges presented when delivering dementia care and support. 

We have a long tradition of supporting people living with dementia and their carers.

For more information please visit www.guildcare.org call our Customer Service Team on 01903 327 327 or email enquiry@guildcare.org