Swindon has one of the worst dementia diagnosis rates in England. NHS England figures show that less than half of patients (49.7%) with the condition have a formal diagnosis. It means that more than 760 people are not diagnosed who would have been if Swindon had the same diagnosis rates as the average (80%) of the top 10 performing areas.
Avon and Wiltshire mental health partnership NHS trust, which runs dementia services in Swindon, says the average waiting time for memory assessment is nine months, while for those patients referred for a brain scan to confirm or rule out diagnosis, the average wait is about six months.
At a busy dementia cafe session run by Alzheimer’s Society, patients and their families describe how difficult it has been to get diagnosed. Alan Richardson, 83, had cognitive tests and an MRI scan in January 2019, after he had become increasingly forgetful. But then, says his wife, Janet, they were left in limbo when the pandemic struck. “They told us Alan had suspected Alzheimer’s and dementia,” she says, “But we had no formal diagnosis for nearly 18 months.”
It took Andrew Smith even longer to get his Alzheimer’s diagnosis. His wife, Doreen, says that after they saw the GP in May 2021, it took four months to get an appointment at the memory clinic. But they had to wait until August 2022 to find out the results. All the holdups meant that Andrew’s capacity has worsened significantly, she adds. “The problems are not the fault of the staff, who do their best under almost impossible situations. I am upset for Andrew’s sake, however, as I know that the delay in prescribing treatment has affected the rate of progress of the disease and we could perhaps have had a better quality of life for longer.”
Alison Porter, a self-employed carer who looks after four patients with dementia, says many of the problems are down to staffing and funding. “It’s frustrating for everybody at every stage,” she says. “There’s not enough resources, not enough staff, that’s why it all takes so long.”
To improve diagnosis rates in Swindon, the trust has received £140,000 from the integrated care board to hire new staff over the next year.
Dave Leveridge, the clinical lead for community older people’s services at Avon and Wiltshire mental health partnership NHS trust, says: “We know how challenging memory loss can be for everyone involved, and a timely diagnosis is really important to help people understand their symptoms, access essential help and make plans for the future. We are working really hard to reduce waiting times and increase overall dementia diagnosis rates in Swindon.”
The memory service has already “significantly increased” the number of diagnostic appointments over the last three months, he adds.
The old system of having separate appointments for memory assessment and another for diagnosis has been scrapped. New patients now have a single appointment for both assessment and diagnosis. The memory service will no longer provide ongoing prescriptions or after care, with patients discharged back to their GP after diagnosis. The idea is that this will free up capacity to diagnose more new patients.
But many attenders at the dementia cafe say they are worried about the change. Robert Bright says he was concerned and disappointed when his wife, Betty, who has Alzheimer’s and vascular dementia, was discharged to their GP. “Memory clinic staff know more about Betty’s condition and medication than the GP,” he says. “GPs are not experts in dementia.”
And for others, a stumbling block to early diagnosis can be the patient not believing they are unwell. Brian Archer says although it took more than four months to get his wife, Jean, an appointment at the memory clinic, the hardest part was convincing her to see a doctor in the first place. “I knew something was wrong, but I couldn’t convince her to go to the GP, because Jean doesn’t see anything as being different.”
Some names have been changed
