Dementia services are too complicated with poor communication, says Sheffield watchdog
Families who have relatives with dementia are struggling with complex services and a lack of communication, says a Sheffield watchdog.
People find the health and social care system difficult to navigate – made even worse by being unable to get through to services.
Healthwatch Sheffield and South East Sheffield Community Dementia Advice Service says Covid exposed some of the gaps in support for those living with dementia and their families, and made some existing issues worse.
Their report says: “Instead of caring for their relatives and getting the right support for them, people were chasing organisations which they said were supposed to help.
“People told us about a range of challenges they faced while trying to get support for them or the person they cared for.
“Many people expressed disbelief that things could improve, and a lack of trust in the health and social care system.”
One relative said: “We should not have to spend so much time ringing telephone numbers that are never answered” while another felt that it was their own persistence which helped saying “it’s only because I can negotiate the system, it would have been difficult otherwise.”
Another relative said: “It could be difficult to get any action from services: We were back and forth with the social worker. We knew we needed a plan in place but it took a lot to get this.”
There were complaints about services not following up initial referrals. One person said: “social care did an assessment then said they could not help” while another noted: “physio was meant to come and get mum walking properly again. They came once, never saw them again.”
People felt strongly that there was a lack of information and communication – contacting GPs was highlighted as a particular problem.
One said: “I had more than enough numbers to call – probably too many. It gets confusing” while another added: “we should not have to spend so much time ringing telephone numbers that are never answered”.
A third said “people haven’t got back to me when they said they would” and someone else noted: “communication was an issue it seemed like nobody was talking to anybody else”.
People had lots of ideas about how support could be improved, including a one-stop shop, communication with families at an earlier stage, being able to see professionals face-to-face and having someone explain verbally rather than being left to read booklets.
Healthwatch said: “Clearer procedures around offering support to families early on when a dementia diagnosis has been received should be established and there should be clearer communication channels for families so calls are not left unanswered.
“Staff capacity for dementia specialists should be increased throughout the health and social care system and where they exist currently in the system, what they do and how they can help should be more widely communicated.
“A one stop shop or centralised dementia centre should be commissioned to offer practical support to families living with a person who has dementia.”
The report is available here