"Dementia Nurse Specialist carer experience"

About: Tolworth Hospital / Memory clinic

(as a carer),

My dad has been receiving support from Neil the Dementia Nurse Specialist at Tolworth Hospital. It's with mixed feelings that I received the information last week that my dad is being discharged. I'm happy that that the professionals are pleased with how my dad is managing and that the support I have organised for him is working well. I also understand that dementia numbers are growing and any support services available are having to grow exponentially in the context of limited resources. However I feel that a "lifeline" has now been removed and that there's no specialist service supporting my dad; there's no-one periodically asking those specialist questions at a time when my dads needs are changing. Instead, my dad's care will revert back to the GP. My dad is lucky, he has a good GP.

The service Neil has provided my dad will be much missed. I suppose I felt Neil was supporting me rather than supporting my dad, but the end result is that my dad maintains his independence for as long as possible. I work with people with dementia so have professional knowledge of the condition and I'm now feeling bereft..... I wonder how most other families feel when they are being discharged?

Neil has a lovely manner with the clients who use his service. He is approachable, gives information simply and is very easy to talk to. He has always given the impression that he has as much time as you need during appointments. He has always followed up on the things he has said he would. He has a practical way of working and I came away from each appointment with new things to research in order to help my dad. Previous appointments with the Psychiatrist were less helpful and it just felt that the service was monitoring my dad rather than providing us with any practical solutions. My dad, who has a poor memory for names and people and struggles with word-finding, usually remembers who Neil is and thinks he's "a nice bloke" - that's praise indeed!

Leaving the dementia service means that my dad no longer has access to other members of the community mental health team such as OT (who has also been very helpful).

Our overall experience of the dementia team has been very positive; it's the discharge bit that I'm worried about.....

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Response from Jane Healey, Patient Experience Lead, Governance, South West London and St George's Mental Health Trust

Dear LO,

My name is Jane and I am one of the Patient Experience Leads for the Trust. Many thanks for sharing your thoughts about the Dementia Service and the support you have received, I am so pleased that you found this helpful. I have personally passed on your compliments to Neil who was delighted to receive such lovely feedback.

I am sorry to learn of your concerns relating to further support once you have been discharged. I would encourage you to discuss this with the dementia service as they should be able to provide you with helpful advice and direct you to other agencies in the area who can support you and your dad.

Kind regards

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

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