Healthwatch East Sussex calls for further guidance to be provided to individuals with dementia and their carers.

HWES had one to one conversations using some key lines of enquiry to get in depth feedback and really listen to individual experiences.

We wanted to know whether these individuals are being given enough support and that health and care services are listening and appropriately responding to their needs. Our report highlights our findings and recommendations.

We heard:

• Service users were very positive about the Memory Moments Cafes, stating they are a place to socialise, get them out the house and get information about dementia services. The regular social worker that attends the cafes is highly valued too.
• The process to receive support can be confusing, difficult and time consuming. It was clear that there is a need for further information on how to get social care and support.
• Opinions of GPs from individuals with dementia or their carers was mixed but many have had negative experiences. Accessing other services can also be a challenge such as physios, carers and memory clinics.
• Most respondents (35 of 45 respondents) we spoke to knew what a Social Care Assessment was. Of those who had received an assessment (23 people), about half (11 people) had found the process positive or had received an outcome.
• Patients who know of the “Golden Ticket” (a scheme which offers further post-diagnosis support to dementia patients, giving easier access to further services) spoke highly of the support this provided.

The service users of the Memory Moments Cafés explained how the group had been a useful tool to offer a time to socialise, to get tips from other carers, learn about the support available to dementia patients and the social worker who attends regularly offered further guidance too.

Respondents highlighted the barriers that someone with dementia can face when accessing Adult Social Care support, such as receiving aids or benefits but also their experiences of accessing and seeing a GP to get regular treatment or referrals. Further barriers for dementia patients included a long wait for an official diagnosis and health and care services not being dementia-friendly. It would seem that there are a number of people who have not had a Social Care Assessment or even know what it is, this is concerning when this would allow them to get the help they need.

John Routledge, Executive Director of Healthwatch East Sussex commented:

“It is essential that residents with dementia are getting the support they need from Adult Social Care and health and care services. Whether that is getting a diagnosis from their GP or receiving a Social Care Assessment, these processes ensure individuals with dementia do not face further barriers in accessing the services they require and can make what could be a confusing process a lot easier for them. If these processes are clear from the start  then when conditions progress further in the future, individuals with dementia will have the support they need then too.

The work Healthwatch East Sussex conducted has shown how valuable community groups like Memory Moments Cafes are, bringing residents together and offering guidance when people are in need. It is important that these services are recognised and continue to be available to residents.”

Our recommendations

We are calling for:

• Prioritising the visits from the Social Worker at the Memory Moments Cafes so that further information is available to all those that attend.
• A review of the sections on the NHS website on dementia care and support to analyse its effectiveness for those with dementia and their carers.
• Adult Social Care to evaluate from a lay perspective the process of applying for support and any difficulties that may be encountered along the way.
• The Golden Ticket Scheme to be made more widely available.
• Services to be dementia-friendly and ensure that dementia patients can have face-to-face appointments.
• Healthwatch East Sussex to have future conversations with service users at the Memory Moments Cafes to review if health and care services have improved.

Healthwatch East Sussex will continue to work closely with Adult Social Care and health and care providers to follow up on our recommendations and continue to explore how residents find the overall processes and support available to them in their community.

Tell Us Your Experiences

If you have used or tried to access a dementia service in East Sussex, then please tell us your experiences via our Feedback Centre and let us know how this has been for you.

We want to hear if it has been good, bad or indifferent.

Help and support

If you need help or support with dementia or any other health or care theme, then please contact our Information & Signposting Service via 0333 101 4007 or enquiries@healthwatcheastsussex.co.uk