Patricia Winchester writes to Andy Weir, Director of Adult Mental Health and Social Care, to raise concerns about the lack of appropriate provision for islanders living with complex dementia

Letter sent 29 April 2024

Dear Andy,

I note with concern that funding for the Dementia Strategy has not been approved. This was a much needed and long overdue plan for developing appropriate services for elderly islanders living with dementia, which can be such a cruel condition and have huge physical, social, emotional and financial impacts on all concerned.

I know we have frequently discussed the issue of Beech ward and the problems faced by patients and I am now writing to again raise the profile of these issues.  In brief these are as follows;

• We have a significant number of patients for whom dementia assessments have been completed, but no suitable placement has been found, resulting in prolonged stays on Beech and Cedar Wards. Current examples of extended stay on the ward;

Client A – admitted to Beech in 2020 – [INFORMATION REDACTED].

Client B – admitted to Beech in September 2023 – [INFORMATION REDACTED] – Is an inpatient MH ward or even a Residential care home appropriate for someone of this age?

Client C – admitted to Cedar ward circa 2021. – INFORMATION REDACTED]

Beech Ward is an acute assessment ward – as such it is not, and cannot be, homely and does not match the aspirations we have of people being able to settle into, and be cared for, in an environment which becomes their long-term home.  It does not meet the Care Commission criteria for residential or nursing homes and yet as shown above, we have patients currently living on Beech Ward for over 3 years.  The ward is well run but can, due to the unpredictability of some patients, feel like an intimidating place for family and friends to visit, and of course, to leave their loved ones.  What standards do we expect of care homes, that we cannot currently meet within the clinical environment?  These will include:

• Personalisation of rooms
• Homely environment
• Access to outside space
• More flexible visiting hours
• Opportunities to engage with personalised 1:1 support – games/music/activities
• Resources to support access to the wider community – outings to cafés/places of interest
• Likewise, a significant number of patients are experiencing delayed discharge from the general hospital to care homes, with potentially long-term detrimental effects on their physical and emotional well-being. Delays certainly impact on their privacy and dignity. Further, this creates difficulties in acute medical settings, either by requiring additional staff support or by preventing the admission of new patients.
• We note what appears to be an increase in the number of clients being ‘given notice’ from residential care providers as their team/facilities are deemed unable to meet a person’s needs. This may be due to the skill set of the staff team, or lack of appropriate training, staff number pressures, homes promoting ‘dementia care’ but in reality, not being able to provide more intensive dementia care, with subsequent breakdown in placements.  We are also concerned that should people become acutely unwell in a residential home requiring an increase in antipsychotic medication, which requires supervision by skilled nursing staff, no bed in Clinique Pinel may be available.

I am aware of an increasingly widely held and resigned feeling that we are experiencing what has long been the norm in the UK – Jersey as a leading OECD member can, and should, do better.

Are any negotiations being held with care group providers to deliver a skilled service which meets more complex needs?  Many providers have significant contracts with the States of Jersey or have placement fully or partly funded by the tax-payer – is any effort made to balance some exceptional facilities with providing care at an increased rate for more challenging dementia clients?  Is training made available on a regular basis to reduce risks and improve skills levels?

One of the consequences of generally improved health care is that individuals living with dementia are sometimes still physically very fit and strong, and those with early onset will require possibly a decade or longer of intensive support.  These years should not be lived in a clinical environment where opportunities to meet personalised emotional and social needs are restricted.

Decision makers may need to be aware that none of us can predict whether we or our loved ones will live with dementia, or indeed how severely we might be affected.  We would not wish to be warehoused, and as a community we need to plan-fund-and do-better.

Yours sincerely

Patricia Winchester