In February 2024, three Fairoak Owls travelled to the Learning Disability England 2024 Conference in Leeds and were part of a consultation group on an important subject for us all – healthcare and healthy living.
The Fairoak Owls are our tenant board and represent the interests of all our tenants, helping us make decisions about how Fairoak is run and develop policies and strategies that affect all of our tenants.
James, Kirsty and Ryan attended the conference and what really struck a chord with them was the subject of barriers to accessing healthcare, something which they and many other tenants often experience.
“We know that for people with learning disabilities and people with autism there can be barriers to accessing healthcare services or guidance on staying healthy.” Says Fairoak Tenant Engagement Officer, Alison Barnes.
“Staying healthy includes getting access to good information around eating well, exercising, and also having the support to do this.”
“However, more pressing was the issue of barriers to healthcare, a subject they put before the Fairoak Board. On hearing their presentation, the Board were quite passionate about the matter and have tasked the Owls to take on the challenge and pursue further.”
So in early May, Fairoak Owls James, Kirsty, Vikki, Lily and Michael welcomed Dr Amy Lee from the Captain French Surgery in Kendal to join in a discussion and hear first-hand some of their experiences of accessing healthcare services such as GP practices, pharmacies and hospitals.
Dr Lee has been a partner at the practice since 2001 and knows a number of Fairoak’s tenants well as a few are patients at the Captain French Surgery. She is also a GP on the local Integrated Care Community Team which was formed to help building partnerships in the interests of the health of Kendal’s communities.
“We have been trying hard over the years to improve and we know we still have a way to go, and we’ve got to keep trying to be better.” Dr Lee said, very openly. “We ourselves like to think that we’re accessible, so it’s good to hear your thoughts and experiences.”
Just like everyone, people with a learning disability or autism can be very nervous about going to see their doctor or making a visit to the hospital or dentist. None of us really like it as the reason we’re going is usually because we’re unwell, so there’s always the uncertainty of what the diagnosis might be.
The Fairoak Owls at this discussion meeting attend all the main GP surgeries in the Kendal area, and each gave accounts of their own personal experiences. As a result, there were several key points for further consideration and, we hope, action:
Making Appointments
This can be frustrating for everyone, but all the Owls talked about difficulties in making appointments either in-person, by telephone or using an app. The Owls also talked about how they feel they are pushed to have telephone appointments when they would prefer to see a doctor in person.
The Owls all said how they would prefer to see the same doctor each time as this familiarity was reassuring, but they did understand that this isn’t always possible.
Not Being Listened To
All the Owls expressed concerns that they feel like they are not being listened to, particularly by reception staff, which is both very frustrating and upsetting. Worryingly, there were occasions of being made to feel by reception staff that they were wasting the doctor’s time.
Being accompanied by a family member, a friend or support worker helps them to be heard and respected, but they shouldn’t need to have an advocate every time they go to the doctors.
The Way We Are Spoken To
There was quite understandable resentment at being spoken to like a child by both healthcare professionals and reception staff. Again, this wasn’t an isolated incident and each of the Owls had experienced this.
Better Explanation of Diagnosis
There are times when they don’t fully understand a diagnosis or were rushed and didn’t have chance for a proper explanation to be talked through. Having procedures better explained to them, either in more detail or in a way they can understand, was seen as being helpful in the future.
Appreciation of Anxiety
Nobody likes going to the doctor, but the anxiety and stress this can result in for people with a learning disability is often greatly amplified. Taking someone with them helps to reassure them but they would like better understanding and appreciation of what they might be feeling.
Body Shaming
It’s a fact that a lot of people with a learning disability or Autism struggle with weight control and feel that they will be judged because of this which, again, can make them reluctant to go to the doctors.
Our Healthcare Services Under Pressure
“Lots of people with a learning disability do take someone with them to a consultation and, if this helps, then of course it should be allowed.” said Dr Lee, “And when it is something important, the surgery will always try to contact you or your parent or carer as soon as possible.”
“Wherever possible, we will always try to make arrangements on a per person basis, with the individual’s specific needs taken into account.”
Alison Barnes asked Dr Lee if, during their training, doctors are taught or get specific training on how to help people with additional needs and learning disabilities?
“It’s a long time since I did my training and while, yes, there is such training given there isn’t – as far as I’m aware – specific training in helping people with Autism.”
There’s no denying that the NHS and the wider UK healthcare services are under a great deal of pressure because of staff shortages and difficulty in recruiting, to lack of funding. Dr Lee herself said that just the day before she had seen her first patient at 8:30 in the morning and the last one at 9:00 in the evening, around 40 patients in just one day.
“There is another side that we need to see, and that is that we [the doctors] would like to have more time to see our patients but the list just seems to keep on getting longer.”
“It feels like it’s a constant battle for us, and you should never feel like you’re rushing someone; we don’t want our patients to feel like they’re not being listened to, and more consideration definitely needs to be given if someone is vulnerable or has a learning disability.”
The Fairoak Owls at this discussion meeting attend all the main GP surgeries in the Kendal area, and each gave accounts of their own personal experiences.