"Struggling to locate and access support for dementia "

About: Coventry And Warwickshire Partnership NHS Trust / Older people's mental health Warwickshire PCT

(as a carer),

On Christmas day 2006, dizziness prevented my husband from getting out of bed. Our neighbour- an ex GP thought he might have had a mini stroke. The festive season meant we were unable to see a GP until January when my husband was referred to the Rapid Response TIA Clinic at George Eliot Hospital. After tests, my husband was referred to the Mental Health Team. At the end of August 2007 the doctor gave us his diagnosis: my husband had dementia. The only advice he gave us was that we should inform the DVLA straight away and join the NHS sponsored Phoenix Post Diagnosis Support Group.

For the last 5 years we have attended this group regularly. I have to say that 90% of the information I have gleaned about dementia and the help available for sufferers and their carers has come not from the NHS staff who attend the Phonenix sessions but from other members of the group, Age UK and the Alzheimers society. In my experience, a lot of the NHS staff sit together to chat and drink coffee. Practical help has come only from social services. Not from the NHS.

We visit our GP practice quarterly for prescription review. We do not see the same GP each time. To obtain any GP appointment requires a wait of three weeks; an appointment with a named GP takes 2 weeks longer. The consultation comprises a blood pressure check and my husband being asked how he feels! There is no meaningful exchange. Since there is no medication that can help my husband, I feel the GPs are just "going through the motions". I tried to explain to the last GP we saw that my husband is increasingly suffering from "sun-downing". She asked me what that was! She seemed to have limited experience of dementia.

My husband will be 80 soon. I am in my 70's - and with my husband's dislocated hips and advancing dementia - I am finding it increasingly hard to cope. We have a son and daughter who live at quite a distance; my daughter works full time and has two young children. So we have no family nearby on whom we can call for help. NWBC have provided us with a Borough Care Community Alarm and Social Services have given us emergency contact numbers.

I feel our GP Practice assumes we are being supported by Mental Health and Mental Health assumes we are being supported by the Phoenix group. I think we are supported by neither.

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Responses

Response from Julia Williams, Assistant Director - Experience & Quality, Coventry & Warwickshire Partnership Trust

Dear Late841,

Thank you for sharing your experiences of caring for your husband who has had a diagnosis of Dementia since 2007.

I am sorry that you feel that you are not being supported by Mental Health Services and as such, if you could provide your details to our Customer Services Department (Telephone: 02476 536800) we would be more than happy to explore your concerns in greater detail.

In the meantime, I will forward your posting onto the service for comment and will come back to you once I have a response.

Thank you again,

Julia

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Response from Julia Williams, Assistant Director - Experience & Quality, Coventry & Warwickshire Partnership Trust

Dear Late841,

We are now in a position to provide a response from the service:

Thank you for your comments. We are very keen to improve our services, and feedback from those who use our services, and their relatives is vital to help us do that. It would be very helpful to meet to clarify and understand the specific issues in relation to service provided by us.

If you feel this would be beneficial please do not hesitate to contact me on the following email address: deborah.harvey@covwarkpt.nhs.uk.

Alternatively, I would be more than happy to meet with you and clarify the specific issues, if that would help? You can contact me through our Customer Services Department (telephone 02476 536800)

Regards

Julia

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