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New Report Reveals Shocking Healthcare Statistics for People with Autism
Wednesday, 13 Jun 2018
A new report published by the not-for-profit organisation Dimensions exposes the inequalities experienced by primary healthcare patients with autism and learning disabilities.
The report draws on the results of 252 responses to an online survey of GPs across the UK which took place in March this year. It also draws on data collected through an open survey for people with learning disabilities and autism, in July and August 2017. The survey received 434 responses from people with learning disabilities and autism and captured data relating to satisfaction with GP services, use of learning disability health services, including the learning disability register, annual health checks, health action plans and reasonable adjustments.
In addition it draws on data collected through an internal survey of Dimensions staff teams. The survey received 168 responses from managers, covering the experience of 1,842 people Dimensions supports with health. The survey collected data on key health issues, including overmedication, access to screenings and constipation.
Existing research indicates that the life expectancy for a man with a learning disability is 23 years lower than in the general population, and the life expectancy for a woman with a learning disability is 29 years below average. Patients with autism and learning disabilities are more likely to experience a reduced quality of life, and for health issues to go undiagnosed and untreated. As the first point of contact for most patients, primary healthcare is a significant part of the problem and the solution.
This new report, published in #MyGPandMe, reveals patients with learning disabilities and autism are far less likely to receive routine cancer screenings than patients in the general population. Only 19 percent of eligible women with learning disabilities and autism have undergone a cervical cancer screening, compared with 73 percent of the general population – a gap of 54 percent. Women with learning disabilities and autism are 10% less likely to have the recommended 3-yearly breast screening than other women.
The report also explores other primary healthcare issues that disproportionally affect patients with learning disabilities.
As many as 30,000-35,000 people with learning disabilities and autism are at risk of being wrongly prescribed psychotropic medication. Most GPs (80 percent) recognise the problem and 48 percent said they would benefit from additional training on prescribing and assessing psychotropic medication for patients with learning disabilities and autism.
Compared to the general population, patients with autism and learning disabilities are 30% less likely to feel ‘listened to’ by their GP, 28 percent less likely to feel that they have enough time in an appointment, and 22 percent less likely to feel that they are treated with care and concern.
Under the Equality Act 2010, healthcare providers including GPs are obliged to make ‘reasonable adjustments’ for patients with learning disabilities, but half of the GPs surveyed by Dimensions said a lack of training on how to make reasonable adjustments was stopping them from meeting the individual needs of patients with autism and learning disabilities.
Almost half of GPs (48 percent) identified a lack of clarity around when to make reasonable adjustments, and 44 percent said they didn’t know which reasonable adjustments to offer. Notably, a quarter of GPs (25 percent) said they don’t have enough time in appointments to make reasonable adjustments for patients.
GPs are not getting the training and support they need to improve health outcomes for patients. Two thirds (64 percent) of GPs have received less than a day’s training on how to meet the individual needs of patients with autism and learning disabilities.
Encouragingly, GPs themselves are calling for additional training to tackle the issues they’ve identified. Almost all GPs (98 percent) say they would benefit from additional training led by experts, including people with autism and learning disabilities, to improve health outcomes for patients. 74 percent said they would like this training to focus on reasonable adjustments.
Steve Scown, Chief Executive of Dimensions, said:
“It is unacceptable that people with learning disabilities and autism are experiencing such striking levels of health inequality and a reduced life expectancy. Dimensions believe that patients with learning disabilities and autism deserve better from our healthcare system.
Reasonable adjustments are a legal right not a privilege. It’s vital that we provide GPs with the skills, knowledge and confidence to make small adjustments that will radically transform health outcomes for patients with autism and learning disabilities. With GPs joining our call for further training, we’re hopeful that change is on the horizon.”
Dr Justin Walker, Senior Partner at Stewart Medical Centre, Buxton (Clinical Commissioning Lead for Mental Health and Learning Disability, North Derbyshire CCG), said:
“We’re all too aware that there are major gaps in training when it comes to caring for people with learning disabilities and autism.
"As GPs we want to do the very best for all our patients and it’s simply not good enough that people with learning disabilities and autism are experiencing such striking inequalities.
"Quality primary health care is a pillar of overall quality of life, and I welcome Dimensions’ call for further training on reasonable adjustments. I strongly encourage GP practices across the country to participate.”
As part of its #MyGPandMe campaign, Dimensions is working in collaboration with primary healthcare providers to address health inequalities and improve outcomes for patients with learning disabilities and autism.
Dimensions will be running 50 free GP practice training sessions, co-led by people with autism and learning disabilities, with a focus on making reasonable adjustments.
For more information, go to https://www.dimensions-uk.org/get-involved/campaigns/make-gps-accessible-mygpandme/