People being diagnosed with dementia in Wiltshire are not getting consistent care from their GP surgeries – according to a report published by the county’s independent health and care champion.
Healthwatch Wiltshire spoke to 195 people – including those who have been diagnosed with dementia, their families, volunteers and professionals – to find out about their experience of being diagnosed with dementia at their local GP surgery and mixed results were found.
Some people said their GPs were dismissive of their concerns about their memory; they didn’t get a clear diagnosis and they weren’t referred on to other services or offered reviews.
Others reported GPs who listened to people’s concerns and carried out memory tests, gave a clear diagnosis, prescribed medication, referred their patients to other support services and reviewed regularly.
One carer said: “The quality of dementia care can depend on your surgery – there are some positive experiences.”
Another said: “My father was diagnosed last July by his GP. I found it very isolating. The GP didn’t inform us about what we could do and didn’t explain everything to me. Later on, the GP casually mentioned Dementia Advisers and said they would refer us. No one got in touch but I made direct contact and the services offered by the Alzheimer’s charities are great.”
The Healthwatch Wiltshire report Talking to People About Dementia: a focus on primary care, first published in March this year, found other key themes, including:
People said they valued a clear, direct dementia diagnosis – not everyone had this with some saying their GP had hinted it could be dementia but was not direct.
Unpaid carers said the approach of their health care centre had an impact on their quality of life. Those who were recognised as a carer at their GP practice and given priority appointments reported a positive experience.
Many people were concerned about the lack of ongoing support from their health care centre for people living with dementia. Some people reported they had not talked to their health care centre for a number of years.
Lucie Woodruff, Healthwatch Wiltshire manager, said: “With an estimated 6,624 people living with dementia in Wiltshire, we have made it a top priority to talk to people in the county about their experiences of dementia care and support.
“Our role at Healthwatch is to ensure we gather views both good and bad from members of the public and then pass these on to the decision-making bodies who plan, pay for and run these services in Wiltshire. It’s important that people have a say in how their local health and care service is run, so they can help shape it for the better.”
The report’s findings have been presented to the Wiltshire Health and Wellbeing Board, the Dementia Delivery Board and the commissioners and providers of dementia services in the county.
Wiltshire Clincial Commissioning Group (Wiltshire CCG) and Wiltshire Council say work has and continues to be planned, delivered and reviewed around each area that has been commented on by the public in the Healthwatch Wiltshire report.
They say 256 practice staff across the county have received Dementia Friends training and the CCG’s dementia lead has provided more training to GPs across the county. The feedback from Healthwatch reports has and will be sent to each GP practice and the key themes in the report have been identified and included in the Wiltshire Dementia Strategy Action Plan.
Ted Wilson, Director of Community Services and Joint Commissioning for Wiltshire Clinical Commissioning Group, said: We work closely with our service providers and are using the feedback provided through the Healthwatch report to inform continuous improvement in services for those living with and affected by dementia.
Dementia diagnosis rates for Wiltshire are above the national average and this is something we are really proud of. Our dementia advisers are doing a great job in supporting patients and their families post-diagnosis, at home and in their local communities. They provide confidential advice and information to help improve understanding about dementia, what might happen in the future and to make informed decisions about care and treatment.
None of us can be complacent about the care available for people living with dementia; we must continuously strive to deliver the best services possible.”
The full Talking to People About Dementia: a focus on primary care report is available to download at: healthwatchwiltshire.co.uk/reports-publications
Wiltshire couple talk about diagnosis
Doreen and Len Willis, who live near Trowbridge, have had a mixed experience with their GP surgery after Len was diagnosed with vascular dementia three months ago.
Doreen, 77, and Len, 82, have been married for 53 years. She explained: “Len had a stroke in 2006 and since then a series of mini strokes which have led to memory loss over the years.
“Our GP gave a clear diagnosis of dementia. Well I knew very little about dementia and felt quite overwhelmed by it all. Our local vicar had heard about Len’s condition and suggested we got in touch with Alzheimer’s Support.
“We had a Dementia Adviser come out to our house and he told us things we wouldn’t have known. It was so nice to speak to someone in plain English, as I am not medically trained! Nothing is too much trouble, what he says he will do he does. He gave us advice on legal matters, financial matters and support groups out there. We can’t praise him enough.”
There are nine Dementia Advisers in Wiltshire, provided by Alzheimer’s Support, who look after more than 2,000 people across Wiltshire offering advice and support to families.
Babs Harris, Alzheimer’s Support CEO, said: “Our nine dementia advisers provide much-needed information and support to people living with dementia and their carers from the point of diagnosis onwards.
“We would like every doctor in Wiltshire to make a referral to this excellent and well-established service as a matter of course. It is hard to understand why some GPs are still not doing this and we are very willing to come and talk to any practice that would like to know more about the service.”
Former Scout leader Len, 82, now visits a weekly club in Southwick and a memory café in Trowbridge. Although he finds it difficult socializing and remembering people’s names, he is enjoying the support the groups provide. He said: “The memory café is lovely, people make you feel so welcome, they’re a lovely bunch of people.
“I find it very hard with my balance at the moment. I’ve been so active all of my life and now I can’t walk as far but these groups help me get out.”