‘You need to listen’ — people with lived experience of disability tell UK government how healthcare must change
Four people who work with VoiceAbility have shared their experiences of disability as part of an inquiry into the UK government’s new 10-Year Health Plan for the NHS.
Lucy Lovett, Jon Bonner, Anne Hunt and Jeremy Harris were invited to Westminster in London last week to speak to MPs about the challenges they’ve faced when receiving care and treatment from the NHS, and highlight what needs to change.
Following the round table event with the UK government’s Health and Social Care Select Committee, they shared some of these experiences with us.
Left to right: Anne Hunt, Jon Bonner, Jeremy Harris and Lucy Lovett pictured outside the Houses of Parliament after attending the UK government’s Health and Social Care Select Committee
Lucy — a former Expert by Experience for VoiceAbility, who told her story as part of the launch of our Use Your Power campaign in March — said: “One of my worst experiences was when I was in A&E due to my mental health.
“I was seen by the Child and Adolescent Mental Health Services (CAMHS) crisis team, and they decided they weren’t going to admit me and I was going to be discharged.
Lucy, who was detained in a mental health hospital at the age of 15, told her story as part of the launch of our Use Your Power campaign. Photo credit: VoiceAbility/Neck of the Woods Films
“In the advice they gave me, they suggested I should take Kalms herbal remedies to resolve my mental health issues — even though the situation was an acute mental health crisis and not something that herbal remedies would resolve.
“I think that just shows the lack of understanding around mental health, and experiences like that cause a lot of mistrust and reluctance to seek further help when you’re invalidated and dismissed.
I think the government needs to listen to people with lived experience of the system, and their voices need to be heard as equal stakeholders in these services to make sure they are suitable and help people.
Jon — who VoiceAbility employ as a Speak Out Leader in Southwark, where we’re working with Southwark Council to improve clubs and groups so that they’re accessible to more children and young people with special educational needs and disabilities — spoke about his experiences as a neurodivergent parent to 3 daughters, 2 of whom are also neurodivergent.
“When I tried getting my daughter help through Child and Adolescent Mental Health Services (CAMHS), the waiting list was 6 months to a year,” said Jon.
“So the only way to access it was when she was having a severe, autistic mental breakdown and we took her to A&E.
“You get seen [by CAMHS] within 2 weeks and then that rolled on to a severe mismanagement within the service. I was told we need family therapy, and while yes it would have been helpful, it wasn’t directly for me or my daughters. I kept saying to them thank you for the offer, but it’s not for us.
“I then physically had it thrust upon me by having an appointment arranged. I had to go to the governance team to say ‘look, they were told no multiple times, why did this happen?’
Speak Out Leader Jon talking at a Southwark special educational needs and disabilities event.
“At the time, it put a massive strain mentally on myself, my eldest daughter who was struggling with her mental health and my other 2 daughters — because as a family unit you all go through it.
“Even though we were asking for the help, and begging for the help, the wrong help was offered.
People need to be listened to more, and there’s not 1 tick box for everybody. Just because you met 1 person with autism, it doesn’t mean you treat us all the same.
“The best and the worst I guess we’ve had is being told ‘oh you don’t look autistic’.
“Well, we haven’t got flashing lights on our heads. What does an autistic person look like? We’re not Tasmanian devils bouncing around! There needs to be a bit more education and learning within the system.”
Anne works for VoiceAbility as a Speak Out Leader in Cambridgeshire. She draws on her experiences of having a learning disability to work with Cambridgeshire County Council and other local organisations to make services more suitable for autistic people and people with a learning disability.
Anne works as a Speak Out Leader in Cambridgeshire
She said: “I had an annual health check and I asked for my health action plan. The nurse gave me one, but it was blank — and they expected me to fill it in. I didn’t know what to do with it.
“It made me feel upset. I was thinking ‘I can’t do this; how are you expecting me to do this?’
“They need to give action plans in Easy Read, already filled in for people so they know what they need to focus on to keep healthy. I want learning disability nurses to be known about, better access to GP surgeries, and people to know about hospital passports.”
Asked about what difference working for VoiceAbility has made to her, Anne added:
If it wasn’t for my Speak Out work, I wouldn’t know how to have my say. It’s easier to get to people from different services, and have our voices heard and get support. But it’s still hard for people who don’t know about these things to get support.
“People are grateful for our work through Speak Out, and it makes me feel very important.”
Jeremy, who has previously spoken as part of our Use Your Power campaign about how his autistic daughter Bethany spent 3 years in a seclusion cell, said: “My worst experience of healthcare is my daughter being admitted to a secure, inpatient mental health unit.
“The environment made her autistic presentation far worse, and that resulted in a lot of restrictions, a lot of physical restraints, seclusion, segregation and overmedication. It was dreadful.”
Bethany holds her dad Jeremy’s hand through a hatch in the seclusion cell door. Photo credit: Jeremy — Bethany’s dad
Speaking about his work for VoiceAbility as an Expert by Experience in Care and Treatment Reviews for the NHS Coventry and Warwickshire Integrated Care Board, he said: “I use the experiences gained from my daughter’s journey to inform the care approaches around other people with autism and learning disabilities who are locked up in hospital.
“I work as a panel of 3 people. We go in, we spend a day reviewing the care, and we then make suggestions and recommendations as to how care can perhaps be improved, how we can work towards discharge, and how the community can start to prepare to get the person home again.”
About what needs to change and what difference the right care has made to Bethany’s life now, he added: “We need to see a change in the approach in getting the person’s voice heard. That change needs to be that the voice is heard, but also taken equally.
It’s no good it just being a tick box exercise. The person’s voice, the family’s voice, the carer’s voice has got to carry equal weight as the professionals.
“Bethany has got the right environment now. She’s got an amazing team of people who understand her autism and anxiety levels.
Bethany is now living happily back in the community after her family fought for many years to get her discharged from hospital. Photo credit: Jeremy — Bethany’s dad
“She has the right approach, all of the time, to support her needs. She has the best life imaginable; it’s amazing.”