Saba Salman – 14 October 2022
To improve healthcare for all, people are sharing private concerns, difficult moments and practical suggestions in an animated video for health professionals, says Saba Salman.
Medical jargon and short appointments in inaccessible rooms make healthcare difficult to access – Sunnybank Trust
“I can’t do text. I can’t read texts. I can’t do that like people can. And I say, ‘why you keep texting me? Can’t you phone me? Phone me. Like I phoned you this morning.’ ”
There is palpable frustration in these words from a patient describing how difficult she finds communicating with her GP. Her direct voice is one of five that feature in a film on the health inequalities experienced by people with learning disabilities.
The six-minute animation, circulated to GP surgeries in Surrey over the summer, presents professionals with testimonies from patients with learning disabilities. They describe a lack of accessible information, problems with medical jargon and appointments that are too short or held in inaccessible rooms.
The film is a collaboration between researchers from Surrey Heartlands – a partnership of health and care organisations, including Surrey County Council – and local learning disability charity the Sunnybank Trust. The trust supports around 300 people.
The project, funded by the NHS and Surrey Heartlands and produced by London animation studio Strange Beast, aims to raise awareness of the barriers to primary care and encourage healthcare staff to find solutions.
Researchers interviewed 25 people with learning disabilities in Surrey, London and Yorkshire, identifying common themes and stories that represented the main issues. They then interviewed five of the original participants and a parent carer to get more detailed testimonies. These were the basis of the animation.
Even before Covid-19’s disproportionate impact on people with learning disabilities, a vast amount of research had already outlined how they receive poor-quality healthcare. The reasons for this range from professionals’ lack of awareness about learning disability to doctors wrongly attributing a person’s behaviour to their disability rather than an illness.
The latest evidence of this inequality came in this year’s NHS-funded Learning from Lives and Deaths programme, an annual report into the avoidable deaths of people with learning disabilities.
It showed people with a learning disability continue to have a much shorter life expectancy than the general public, with six out of 10 dying before the age of 65, compared to one out of 10 people in the general population. Those with epilepsy and from minority ethnic backgrounds were more likely to die younger.
Despite this research and various steps aimed at closing the health inequality gap, problems remain. For example, take-up of annual health checks has been slow, not all GPs offer them to people with learning disabilities and not many are done on time. And not all medical professionals are aware of health passports people hold that contain clinical and other personal information.
Health passports overlooked
As one contributor to the film says: “Some doctors don’t always know that I’ve got slight learning difficulties and that’s why I need support with me to explain what they’ve got to do. But also, the hospital passport I carry – they don’t ever look at it.”
This is why Sunnybank Trust chief executive Dorothy Watson says she is proud of the individuals who took part in the film. She praises them for sharing private concerns and difficult moments to help improve health access for others.
The film also highlights some good practice. One relative says of the family member she supports: “So, during lockdown, we had the annual review over the phone. His mental health was affected very badly. The GP took her time, listened to him, listened to me and she said she was going to refer him to a social prescriber, and she even said, ‘I’m going to follow up on both of you’ – because she could see it was affecting my mental health as well.”
Another participant supported by Sunnybank says: “Sometimes, because the secretaries do know me… and I think I need a longer time to talk to the doctor, they do book me a double appointment.”
The project also reinforces the fact that some health problems are simple to treat once diagnosed, and a GP can often prevent a health condition from becoming serious with early identification.
Start with small changes
Those involved in the film are keen to highlight simple solutions for GP surgeries and beyond. Basic steps include using simple, accessible language, visual prompts, bigger text and bullet points, and keeping writing to a minimum.
A GP who familiarises themselves with a patient’s preferences and needs and who aims to be as flexible as possible can make all the difference.
“I’m all right if someone explains to me what they’ve got to do first,” explains one person. “They have to explain the reasons and what they’ve got to do step by step. It’s not just GPs – it’s doctors generally, when you’re in hospital or anywhere else. They need to put that in practice.”
Watch the film on YouTube.
