"Very little help or support"

About: London Borough of Southwark South London And Maudsley NHS Foundation Trust / Older people's mental health Southwark / Southwark Social Services

(as a carer),

I was my husband’s carer when he was diagnosed with dementia. Following the diagnosis there was very little help or support – the only support I received was through the Alzheimer’s Society. I just stumbled upon information by chance. You’d think it would be consistent across a city like London but each borough does things differently, in fact 4 carers of similar age that I know in the same borough have all received different advice. There is no consistency.

One of the biggest problems with dementia is that there is little clinical intervention. Following my husband’s diagnosis I asked the memory clinic for advice on accessing help and support, the only direction I was given was to contact the social services! Far more easily said than done.

It’s really difficult trying to contact anyone in social services. What would be helpful is the feeling that different agencies whether health or social care can work together to help.

Respite care has been reduced so that even a week is difficult, they would prefer you take a long week-end. It’s about what they can give rather than what is needed. Added to this is that life lines such as many day care centres have closed putting additional pressure on reducing resources making it even more difficult for carers.

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Response from Helena Taylor-Knox, The Power of Story Project, South London and Maudsley NHS Foundation Trust We are preparing to make a change

Hello, and thanks for taking the time to post on the Patient Opinion website. We recognise that resources are stretched across health and social care but I will be asking our Social Care Lead here if she has any advice and guidance for you. If you would like to get in contact with me directly to discuss this, my email address is Helena.Taylor-Knox@slam.nhs.uk or telephone 020 3228 1638

You raise a very good point about support resources for carers. It was for some of the very reasons you have mentioned that we have worked with a group of our carers to develop a course called “If Only I’d Known”. This is a free six week course run by carers for carers and covers some of the most important topics to them. It is always supported by a clinician and can be accessed through SLaM’s recovery college http://www.slamrecoverycollege.co.uk/timetable.html (page 4).

Our Clinical Services Manager for Community Services is looking at the complaint with his team but has also asked that we provide this link to our community partner agency, Age UK Lambeth & Southwark’s excellent information and service guide, we hope this will be helpful http://directory.ageuklambeth.org.uk/.

I hope you will get in touch. Best wishes


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