Alex Gournay joined us in October as Community Health and Engagement Officer for the Hertfordshire wheelchair service. He has 10 years’ experience of working in the charitable advice sector and is looking at ways that our service can be improved, as well as looking at ways to help more wheelchair users can use their personal wheelchair budget to get the chair that meet all their needs.
As it’s Disability History Month, Alex wanted to share his reflections on the history of his wheelchair, which also shows how wheelchairs and wheelchair provision has changed in that time.
Alex’s wheelchair story.
"I’ve been a wheelchair user for 25 years; in that time, I’ve used several different wheelchairs. The technology of wheelchairs has changed considerably in this time, year to year the change is subtle, looking back there’s been substantial change, mostly for the better.
My condition is a progressive one, I was able to walk until I started secondary school in 1995, when I started to use a manual wheelchair. I was able to propel myself a small amount, but as my condition also affected my arms I had to be pushed for long distances. My first powerchair was bought by Whizz kids, and whilst it gave me independence, after the first 18 months it needed constant repairs, partly because it had plastic footplates that would break regularly when they were struck by the large doors at the entrance of every building of my school.
At that time, I also used a prototype stair climbing wheelchair called the Mobility 2000 that my school had bought another pupil who was too scared to use it. My school didn’t have lifts, so this was the only way to access the upstairs classrooms.
The chair needed great care and skill to use, and it took about 15 minutes to climb or descend a set of stairs, so I would miss the first and last 15 minutes of a lesson. I was enamoured with the chair when I first used it, but reflecting on it now, it seems absurd that such a complicated and risky method was considered easier than installing a lift. Many disabled people like myself see this the as a technological solution to a problem that requires a social solution based on understanding that much of the disadvantage of disability come from systemic barriers.
My next powered wheelchair was an NHS one, the model was the Harrier Plus. This wheelchair had multiple problems and after four years’ wear and tear, I was ready for a new one. As there wasn’t much choice, I had the same model again, which served me through university, whilst studying for my degree.
Throughout there wasn’t any choice of features or colour, other than black. In my teenage years, this didn’t bother me as I tended to wear black most of the time anyway. The service flipped between NHS and contracted services during this time, but the service stayed the same as I had my wheelchairs replaced.
In 2012 I was supplied with an Invacare TDX SP Narrow Base, it was the first six-wheeled wheelchair I used and was a vast improvement of my previous four-wheeled models. The increase in manoeuvrability was freeing when moving around at home and I felt that the design considered that a wheelchair was something you lived in and is an extension of your bodily space, it’s not merely a piece of equipment. This chair served me well and was a vast improvement on previous ones.
In 2016 I learnt to drive, using a van supplied by Motability, which was adapted so that I could drive whilst sat in my wheelchair using hand controls. This was made possible because of advances in car adaptations and unlike my previous wheelchairs, the TDX has been crash tested as part of its development.
In late 2018 I asked for a reassessment of my needs, as whilst I was happy with my chair there had been considerable wear and tear, unlike previous occasions I self-referred to the service without getting a referral from another organisation.
Following the assessment, I was supplied with an Invacare TDX SP2 narrow base, which was like my last chair, just with more features. This was because the TDX series has a modular design and it can be reconfigured to give tailored support for more people with a wider range of needs, it even has the capacity for mounting extra medical devices such as oxygen cylinders and ventilators. This versatility makes it easier for buying and sourcing parts.
Finally, unlike previous occasions, I had more choice thanks to the introduction of personal wheelchair budgets (PWB). There are four options with PWB:
- You can take the chair the NHS offers you.
- You can pay the price difference between it and another model offered by the NHS.
- You can take a third-party option where you take the value of the chair and use it to purchase another chair outside the NHS range, though this involves taking responsibility for maintenance and the associated challenges.
- Accept the model offered by the NHS and ‘top up’ to add extra features. This was the option I took.
The NHS was able to supply a seat recliner and a tilt, but not the option to raise the chair or accessories. A wheelchair is the way you present yourself to the world, so I wanted some colour trims and when I found out that it was possible to have a USB port to charge my phone, I wanted to customise it as far as possible. As well as the charger and purple colouring, I added a seat riser, electric footrest risers and lights. I was able to fund the extra cost with assistance from a charity.
I use the raise option sparingly, however it’s been crucial on some occasions, such as at the GP surgery where there’s a high counter in the reception area, so to bring myself to eye level. I feel more comfortable when walking in the winter, knowing that I can light my way. With the USB port I am never left with a flat phone, allowing me to do more on my own knowing I can call for assistance if needed. The whole process felt empowering, and when I received my powerchair I felt that finally the importance of my wheelchair was truly recognised.
I’m not bound by my wheelchair; I’m freed by it. With Personal Wheelchair Budgets I think wheelchair services are acknowledging that a wheelchair is not just a piece of equipment, it’s part of you and the way you engage with the world."