It has been awhile since my last blog post but I feel that now is the perfect time to discuss the subject of wheelchair provision.
As of 8th March 2018, the Government announced new measures to ensure the safety of wheelchair users when accessing wheelchair spaces on buses. This is a brilliant initiative for inclusive public transport however, it is only useful if a wheelchair user has a wheelchair in the first place.
A wheelchair is unquestionably a fundamental extension of my body and capabilities, allowing me to keep mobile & stay connected to society. It’s not a luxury item. Living with Duchenne Muscular Dystrophy means that I’m totally reliant on my wheelchair for mobility, comfort & postural support.
I can never imagine a future without an electric wheelchair, in fact I would not have one.
At the moment I’m on the daunting mission to try to fund a new wheelchair through various ways:
- Charity funding
- Organising a local music fundraiser
- Approaching my CCG for part-funding
- Investigate the voucher scheme the Specialist Wheelchair Services offer.
My wheelchair gives me the freedom to have an active & purposeful life, without it I’d be isolated & stuck in bed. I’m proud of how my life has turned out, working with charities, attending meetings or travelling to see friends. Nevertheless, my independence would never happen without a wheelchair.
I have experienced being stuck in bed about 13 years ago when I was unable to sit comfortably in the electric wheelchair provided by the NHS wheelchair services. So, I had to wait a year until Caudwell Children’s Charity confirmed that they would fund my current Balder wheelchair.
My Balder wheelchair has been my faithful friend for 13 years, it has adapted extremely well to my changing abilities.
My current wheelchair doesn’t have suspension so whilst travelling in my Motability vehicle or driving outside, the slightest bump or pothole causes me pain & discomfort as my muscles no longer adequately support my neck. Driving my wheelchair outside is an intense & stressful activity as I’m constantly observing the road/footpath surface ahead just to find the route with the least bumps. I always have to think about safety as I have a bleeding condition (Haemophilia), this makes me more anxious to venture outdoors.
The new EVO Lectus wheelchair has a 4-wheel suspension system for a smooth driving experience & an adjustable seating/support system. The power backrest recline, tilt & power leg rest adjustment will help me to stay comfortable all day. I will need a new headrest, sensitive mini-joystick to compensate for my weak hand strength, inflatable lumbar support & a vehicle clamp down system.
Funding for the wheelchair has involved writing multiple letters or filling in forms for charity grant application forms, letters explaining the reasons why my CCG should fund my new EVO Lectus wheelchair. I received an assessment letter from the Specialist Wheelchair Services in Leicester stating that they could not provide a wheelchair that would meet my requirements & only offer a voucher scheme for manual wheelchairs.
I feel that it is unfair for the wheelchair services to expect that electric wheelchair users cannot benefit from the voucher scheme. Owning a private wheelchair has saved the NHS wheelchair service considerable money over the 13 years as I have paid for all the maintenance costs & upkeep of my wheelchair.
The Leicester CCG provide funding for my Personal Health Care Budget & have been wonderful in supporting me. However, as the first person in Leicester to approach them about funding a wheelchair, there is no clear pathway in place.
I’m now awaiting responses from every charity application, meanwhile, I have created a GoFundMe page – https://www.gofundme.com/vivekgohil kickstarting it off with £1000.
I appreciate every wonderful donation & support. You all provide me with hope to carry on so thank you.