What’s been happening at our Young People's Wheelchair User Forum?
The Forum has been running for approximately eight years. We found that we only heard what children and young people thought when we were told by their parents, however, we found that we really wanted to hear from the young people directly.
So, in October 2023 we held our first Young People's Wheelchair User Forum in Peterborough.
The issue: The key thing we learned from the young people who attended is that they wanted wheelchairs that represent them, e.g. in the colours of their favourite football team or with wheel covers displaying their favourite pop groups, superheroes, etc.
The outcome: The specifications for NHS wheelchairs are outlined in guidance by NHS England. However, people can buy items separately. AJM Healthcare is ensuring that their team will discuss options that are available and how they can be paid for.
The issue: Parents explained that they were being told their children’s wheelchairs needed headrests for when they were travelling in vehicles. NHS England only specifies that headrests can be provided when they are required for postural reasons. The requirement for headrests when travelling in vehicles is in guidance from the Department of Transport. However, wheelchair headrests have not been 'crash tested'.
The outcome: AJM Healthcare and our Healthwatch have raised this with the Commissioner in the local Integrated Care System. Our Healthwatch has also raised this with the Wheelchair Alliance who are discussing the issue with vehicle providers. More information on the Wheelchair Alliance can be found here: https://wheelchair-alliance.co.uk/
In February 2024 we held our second forum, this time in Cambridge.
The issue: A young person told us about their experience and how it impacts on their life. They and their family have agreed to our posting here:
"Hi, my name is M. I am 12 years old. I have been an independent wheelchair user since I was 3.
My current wheelchair from wheelchair services isn’t right because:
- My chair tips when I get in
- The seat hurts
- It makes me less able to do things
- I need to go really slow on curbs or I will tip out
- I get tired quickly because it is so heavy.
- I tip if I go too quickly. My chair tips forwards or sideways and I fall out.
- My mum and dad have had to buy all my wheelchairs because wheelchair services always let me down.
I used to be able to go on days out, play with friends and enjoy being independent like my brother and friends. Now I am older and can do far less. I need help with most things. I have lost confidence and skills due to my unsuitable chair. I am in pain most days because of my chair, and I have to go in my bed until I feel better. I used to love Dance. I used to love walking my dog. I used to love wheelchair racing. I competed in 5km and 10km distances. I even raced at Disneyland Paris in their Run Disney events in 2018 and 2019 and raced my mum and friends to the castle. I came first in the women's wheelchair category at just eight years old!
I am here today to have my voice heard. Things need to change not just for me but for all children who need a wheelchair. There needs to be better services and better provision that supports all our needs so we can fulfil our dreams and become who we are supposed to be.
Thank you for listening."
The outcome: Everyone was moved by what the young person said. We thanked them for being honest with us. Their statement has been shared with the Commissioner at the Integrated Care Board.
The issue: Parents told us that they wanted communication between AJM Healthcare and themselves to be improved, so that parents knew what was happening and could then discuss this with their young person.
The outcome: AJM Healthcare has asked a member of their team to be the key point of contact between themselves and parents, ensuring parents are kept informed and that actions are promptly followed up by AJM Healthcare.
Whilst these outcomes seem small, they help to improve the service provided to children and young people. Going forward, we will hold more Young People’s Wheelchair User Forums and monitor the outcomes through them.
For more information about our Wheelchair Users Forum, please click the link below:
