A report by Dimensions, a charity for people with learning difficulties, has laid bare health inequalities for people with learning difficulties and autism.
The statistics in the report My GP and Me are shocking – women’s lifespans are cut by 20 years if they have a learning disability, and men by 13 years. Half the people surveyed struggled with long-term constipation due to poor diet, limited exercise and medication, and weren’t attending cancer screenings.
All of this is preventable – and a whopping 98% of GPs surveyed have asked for training to tackle these issues. Many of the health inequalities that people with learning difficulties face could be identified during an annual check-up. But for people who have had a negative experience with doctors and who have anxiety, going to an annual check-up or a cancer screening is a challenge.
The amount of people with learning difficulties going to cancer and cervical screenings is well below the national average, and GPs have asked for more training in this area.
It’s a simple thing, but communication is key to resolving these issues. “I had the same doctor for 20 years,” says Jordan, who has cerebral palsy and learning difficulties. “He was really bad at understanding my needs, and communicating with me. I saw him regularly, and eventually got him to put reasonable adjustments in place, but it took a long time.”
People with learning difficulties reported that the doctor was either talking solely to their support worker, parent or family member and not to them, or vice versa. It’s unsurprisingly that they felt uninvolved in their own health and the medical decisions being made. This means that vital information is not getting across – after all, only a patient knows how they’re feeling, but a support worker might be in a better position to talk about habits, or medication.
When it comes to health, it’s imperative to get all the correct information. The problem of communication is just as keenly felt by GPs. “GPs have told us is that their biggest difficulty is communication, too,” says Dave Robinson, health and wellbeing manager at Dimensions.
“A lot of doctors struggle to communicate with their patients. We need to work in partnership with families, support staff and the GPs, so everyone is involved.” Jordan says that doctors need to spend more time with disabled patients to make sure that they understand everything. “If you’re struggling to read something, or understand something, they haven’t got the patience or time,” he says.
Double appointments, not waiting in crowded waiting rooms, more accessible information – these are just some examples of some of the reasonable adjustments GP practices can employ to make going to the doctor easier for people with learning difficulties. “We’ve found that the GP practice staff really enjoy being involved in the process,” says Dave. “This means reasonable adjustments can be made without being too much of a demand on GP time.”
As Jordan found out, if you change GPs, then the reasonable adjustments fall to the wayside and you’re in the position of having to start all over again. “I’m at a new GP now and I had to explain to them all over again about reasonable adjustments,” says Jordan. The impetus should not be on disabled people to educate medical professionals on how to communicate with and treat their patients, but currently that’s sometimes the reality.
“Reasonable adjustments are the key to unlocking many of the health inequalities that people with learning difficulties face,” says Dave. However, the processes in place are changing. Information on reasonable adjustments are on summary care records which only their GP will have access to, but that’s set to change and soon all medical professionals on the system will have access to it. A small IT change that will have significant positive repercussions.
Another issue is diagnostic overshadowing, which is when a GP overlooks any health problems in patients with learning disability and attribute them to being part of having a learning disability. This means other health issues are missed. However, there is a new template being issued to GPs for annual health checks and it’s very thorough. “If it’s used properly, a lot of overshadowing will be detected,” says Dave.
While it’s the responsibility of the medical practitioners to convey information in an accessible way, GPs aren’t receiving the proper training. 65% of GPs surveyed had less than one day of training on meeting the needs of patients with learning disabilities and autism. In a workplace where they and the NHS are under increasing pressure to cater to all their patients, with many GPs facing burnout, it’s no wonder they are stuck for time to explain to their patients.
It has been recognised as a problem, and training is in the works. “We are offering 50 free whole practice training sessions,” says Dave Robinson. The sessions will be co-led by autistic people and people with learning disabilities who are experts by experience. “We’re working with the Royal College of GPs and other influential organisations and we’re hopeful that mandatory training will take place in the future.”
For Jordan, this is welcome news. “I would like doctors to have more training to communicate better to patients with learning difficulties,” says Jordan. “To listen closely and to explain more clearly.” The bottom line is that everybody is working together to reduce health inequality for people with learning difficulties.
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