A panel of professionals, activists and people with lived experience recently joined the Women and Equalities Committee to discuss the National Disability Strategy and how it could be altered to improve the lives of autistic people and people with learning disabilities.
The panel consisted of:
A particular focus of the panel discussion was health inequalities among autistic people and people with learning disabilities and how this can be improved.
Jackie O’Sullivan highlights that half of the deaths reported in the 2021 LeDeR report were avoidable, and this is something healthcare settings are now working towards changing with the Oliver McGowan mandatory training.
Annual health checks for people with learning disabilities have also been implemented as a way of monitoring health, but Ciara Lawrence says she “battled” to get on learning disability register for three years, and was only offered to be on the register after she spoke about the issue on TV.
However, Ciara said once she managed to secure her place on the register, her first annual health check went “brilliantly well”. “I got really good support, I met my GP, he spoke to me really clearly and he put reasonable adjustments in place,” she said.
Ciara also received extra support when going for a blood test, as she is needle-phobic. Ciara says she was pre-prescribed numbing cream and the nurses gave her control of the situation on the day (whether she wanted to talk or have music on) to calm her nerves.
“They put really small things into place that made such a huge difference to me. And instead of walking out crying and having a tantrum, I walked out smiling, because I felt empowered, I felt they had listened to me and they had put in place all the reasonable adjustments that I needed, and it was great,” she said.
Maya Stretton and Tom Nicholls also spoke about the long waits for autism diagnoses and how this is affecting autistic people.
Maya says one of the most significant issues is that often, without a diagnosis, you cannot receive the support you are entitled to, such as an Education, Health and Care Plan (EHCP).
Tim Nicholls therefore says the government needs to do more to tackle the huge backlog of people waiting for autism assessments, which currently stands at around 140,000 people in England alone.
Mr Nicholls says that while the National Autism Strategy offers a “better structure”, more funding is needed to tackle the backlog.
“Quite simply, you will not tackle the hugely long, unacceptable and damaging waits that autistic people go through in order to get their diagnosis, unless there is more resource in the system. We have tried everything else. It is a case of money and funding for those local areas. Every ICB up and down the country is struggling,” he said.
Jim Blaire also spoke about the problem that autistic people and people with learning disabilities face while seeking a diagnosis. He said people often get confused between learning disability, learning disability and autism, and autism on its own.
“Those are not to be blurred or merged together—that is highly problematic for each set of individuals in those categories. Unfortunately, that is happening,” he said.
Mr Blair says there needs to be better training for professionals to boost their confidence when diagnosing someone as autistic or learning disabled. He adds that there is sometimes a desire to avoid giving labels, as this could somehow impede the person’s development.
There therefore needs to be better training for professionals about what a learning disability is and what it isn’t. “The diagnostics are really important, but sometimes people are very reluctant to do that,” he said.
Mr Blair also spoke about the importance of learning disability nurses, and how having these specialist members of staff in all areas of healthcare would help to improve health inequalities.
“You really have to have significant leadership. You need to have learning disability nurses in significant positions of power to change things, and to lead, shape and direct the services. They should not just be in junior posts. That doesn’t work as well as it could do.
“In order to make effective reasonable adjustments for those with learning disabilities and their family members, we need to have learning disability nurses in all settings and all areas. That is the wish of families and the people themselves. We know that there is a shortage of numbers, but we can see exactly where they can be placed. With will and intent, that can occur,” he said.
Mr Blair highlights that “health inequalities are really a matter of communication difficulties and challenges”, and healthcare professionals need to spend adequate time with their patients to “tune into their frequency.”
For example, there is always a physical, biological or mental health reason behind a behaviour change, and it is important these changes are not just reduced to the learning disability or autism. The person will always be trying to communicate or demonstrate something with a change in behaviour, and it is important healthcare professionals realise this so behaviour changes are not overlooked.
For this reason, Mr Blair says while the Oliver McGowan Mandatory Training is “very good” for new-starters, receptionists, admin staff and many others, it should not replace the training that is built with and for people who use the service.
Mr Blair says training always needs to be built with the individual patient in mind. It needs to be “separate for separate people”, he says. “For example, the training I provide in a forensic setting is very different from what I provide in primary care. The needs are not the same.”
“So, while I think mandatory training is good, we must not think that it will be a panacea. It is a vital stepping stone, but you must still have bespoke, tailored training for those areas, and must always involve lived experience — be that sibling or parental experience, or the service user’s own lived experience,” he concludes.
