Equity of access key to addressing physical health needs of learning disability population
Powerful personal stories, illustrating the complex interface between physical and mental health in people with a learning disability, were a stand-out feature of a recent event hosted by the RSM’s Intellectual Disability Forum on Tuesday 23 May 2023.
The meeting explored common health conditions found in people with learning (intellectual) disabilities, who have a higher rate of ill health and experience worse outcomes, despite efforts to reduce inequalities.
The need for equity of access and treatment was a recurring theme throughout the conference, together with the need to overcome diagnostic overshadowing, which takes place when a patient’s physical or mental health condition is attributed to their learning disability, rather than a potentially treatable cause.
Retired civil servant Ian Rogers opened the programme with an account of his daughter Chloe’s traumatic experience of mental ill-health during the transition from teenager to young adult. Born with Down’s syndrome, Chloe was a contented, fun-loving teenager before becoming withdrawn, upset and anxious as she moved into adulthood, eventually refusing to eat and drink.
Describing the desperate battle his family went through to get a firm diagnosis for Chloe’s problems, Mr Rogers said: “Our own research led us to believe that Chloe was displaying signs of a depressive illness. We expressed our concerns to professionals, but we got the impression they thought Chloe's condition was more related to Down’s syndrome than any mental health issue.”
He went on to share learning points from the family’s experiences, including the need for appropriate services to be joined up and accessible promptly and in the right environment, and the allocation of key workers to each case. Many of these learning points have now been embedded in the NICE guideline, which Mr Rogers contributed to.
Later in the programme Grace McGill spoke to the audience about living with visual impairment and a learning difficulty. An expert by experience, Ms McGill works as a London eye care champion for SeeAbility and spoke alongside her colleague Steve Kill, National Eye Care Services Development Manager for the charity.
Ms McGill described how, losing 50% of her vision in her late teens, she started to experience visual hallucinations, also known as Charles Bonnet Syndrome. “I got referred to the community mental health team and then I was prescribed antipsychotic medications which don't do anything for Charles Bonnet Syndrome. It just made it worse,” she told the audience.
While she no longer suffers from visual hallucinations, Ms McGill continues to live with glaucoma, learning to manage her condition independently.
Mr Kill went on to talk about overcoming the barriers to people with learning disabilities accessing good eye care. “The barriers accessing eye care will often be similar to those that stop them accessing dental care or hearing care.” But, he added, testing can be adapted to meet their needs and more time can be made for testing. “No-one is too disabled for an eye test,” echoed Ms McGill.
The conference programme included sessions exploring common physical health conditions found in those with learning disabilities and how these conditions, including constipation and dysphagia (swallowing difficulties), can be managed. The latest research findings from the LeDeR service improvement programme for people with a learning disability and autistic people were presented. There were also talks about the management of acute paediatric presentations in children with learning disabilities and pain experience and management in people with learning disabilities.
In his overview of the evidence contextualising children, adults and older people with learning disabilities from a population and global health perspective, Professor Michael Brown, from the School of Nursing and Midwifery at Queen’s University Belfast, highlighted the increasing survival and life expectancy of people with learning disabilities.
“What we are seeing is an increasing complexity of need and those will be physical health needs, mental health needs, behaviours of concern, neurodevelopmental disabilities, all wrapped up within the one individual with intellectual disabilities,” he said. “It doesn't matter where you work within healthcare, you are going to come across children, adults and older people with intellectual disabilities.”
Professor Brown went on to talk about the need to plan and coordinate care strategically and locally, to meet this increasing demand. “We need access to expert assessment, treatment, diagnosis and interventions and the need for compassionate care is absolutely key.”
Health promotion and health education for people with learning disabilities needs to be accessible in the same way as it is to everybody in the general population, he added, but also needs to take account of the differing health profile.
“Equality of access to primary care and acute services as a result of this complex range of health conditions for people with intellectual disabilities will require collaboration between out of hours, primary care specialist health services and acute hospitals.”
The conference ended with a talk by Dr Indermeet Sawhney, consultant psychiatrist at Hertfordshire Partnership University NHS Foundation Trust and Chair of the Faculty of Intellectual Disability at the Royal College of Psychiatrists, about a quality improvement project in her trust to develop an enhanced physical health clinic for people with a learning disability. This novel service development is already showing a positive impact for people with a learning disability in improving preventative care.
Hot topics in physical healthcare in intellectual disability: Challenges and solutions, was hosted by the RSM Intellectual Disability Forum on Tuesday 23 May 2023.