"Struggling to locate and access support for dementia "

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.