New research shows that one of the big challenges for people living with dementia, their families, and carers, is to be able to access information about the illness and support services that is appropriate and relevant for their individual needs, at the right time.
In the report we have identified wide inconsistencies across Leicester, Leicestershire and Rutland (LLR) in the way diagnoses are made and what services are available and accessible for people living with dementia from the first suspicions of memory problems onwards.
We wanted to explore what local services currently exist for Dementia service users and to identify any gaps in provision as identified by people who arrange and use them. We heard from more than 350 people living with Dementia, their carers and families. Thanks to people sharing their experiences we have identified wide inconsistencies in the way in which services are available and accessible for people living with dementia.
Our recommendations:
- Improved access to primary, secondary and community care services where the ongoing physical and mental health care needs are taken seriously.
- Timely referrals and appointments for diagnosis and ongoing specialist care.
- Appropriate, timely and professional information about the progression of dementia, future planning, care, benefits and support services, from both the health and social care sector and the voluntary and community sector.
- Easier access to more responsive social services.
- More equitable access to Admiral Nurses and voluntary and community groups for support and social activities.
Harsha Kotecha, Chair, Healthwatch Leicester and Healthwatch Leicestershire said,
“We were aware that many non-urgent dementia services were stood down during the pandemic and not all were stood back up. We need to aim to inform those entering the dementia care phase what support is available. We need to ensure there is easily accessible information about dementia, how to get it diagnosed, what to do with people with dementia who resist diagnosis and what options are available for treatment, care and generally managing the patient before and after diagnosis.”
Janet Underwood, Chair, Healthwatch Rutland said,
“During this in-depth look at the experiences of living with dementia in LLR, we were able to compare services across the three areas. We found that whilst the Admiral Nursing Service is well used and highly valued in Rutland, people seem unable to access this important source of support in other areas of Leicester and Leicestershire. However, the diagnosis rate in Rutland is well below that of Leicester and Leicestershire and the national target. Similarly, those living in rural areas reported greater difficulty in accessing support services. We need to ensure that everyone across LLR has equitable access to support and care.”
Supporting and helping those living with dementia and their carers remains a priority for LLR’s health and social care organisations which includes the Dementia Programme Board.
The LLR Dementia Programme Board aims to address all the recommendations and the report findings will inform the development of the revised Dementia Strategy in 2024.
Graham Johnson and Bev White, Co-Chairs, Dementia Programme Board said:
“On the behalf of the LLR Dementia Programme Board I would like to thank Healthwatch Leicester, Leicestershire and Rutland for undertaking this engagement exercise. The timing of this pre-commissioned research has allowed us to integrate the findings into our LLR Joint Dementia Strategy Refresh ensuring that the wide breadth of voices of those living with dementia and their carers is captured in our strategic priorities.
The priorities contained within the Dementia Strategy, and informed by your research, will be delivered by individual partners who will report their progress to the Board. This way, we can ensure that we are making a difference to people living with dementia.”