Kate Stanforth
is 25 years old and a disabled activist with multiple, life-long health
conditions. She is a lover of dance, volunteering, onesies and her assistance
dog, Spencer.
At the age of 14,
my life changed overnight. Once an active, intelligent, teenager who danced up
to 7 hours a day, I now needed spoon-feeding in bed. It took months before I
finally accepted that I required a wheelchair, but the journey of getting the
appropriate wheels is one which took much longer.
The Wait
After being on
the list for wheelchair services for many months, we attended our first
appointment. Despite my mum virtually carrying me in, the specialist was
reticent to even give me a wheelchair as it ‘could cause further deterioration’.
But I eventually got one. We went through three NHS chairs, all of which
continuously broke and didn’t support my tall, thin and fragile frame.
According to
figures from NHS England:
- 70% of wheelchair users wait more
than three months for their chair
- 30% wait more than six months
- 15% wait more than 12 months
For people with
complex long-term conditions, being able to access the right wheelchair quickly
and with appropriate support is of upmost importance.
Fundraising
We’ve spent around
£10,000 on wheelchairs alone. Thankfully, three quarters of this has been
fundraised for, whilst the rest is all of my parent’s savings. The community
rallied around both of my fundraisers which were 5 years apart; the first was
for a manual chair and the second for a powerchair. I can’t help thinking
though, the success of my fundraisers really did depend on them.
On Twitter I
asked how people raised money for their chairs and received heartbreaking
responses. From remortgaging houses, to giving up Motability cars, people are
suffering to get their vital equipment. Yet I can’t help to think that part of
it comes down to your own social presence too. Imagine if the number of Twitter
followers that you had impacted your ability to get out of the house. This also
determines if you’re going to be in significant pain or able live independently.
This is what some of us face.
Support
Accessing an NHS wheelchair
is a lottery and getting a powerchair requires you to fit multiple criteria
including not being able to walk around your house at all and having the
house adequately adapted. This is why so many of us have had to turn to grants
or fundraising. Scope has information on their website regarding schemes such as Access To Work, Motability
and local grants which may be able to help towards costs of wheelchairs. For
fundraising, the most common method is to set up a GoFundMe account. From community events to
social sharing, every penny counts, so the key is to build up a platform to
reach your target.
The Impact
Wheelchairs
provide independence, well-being and quality of life for thousands of people.
They reduce isolation, improve job prospects, education and allow users to take
part in activities. So why are we all having to fight to get one? NHS England says, for every 182 wheelchair users not able
to work, the benefits bill can increase by up to £1m, whereas the positive
economic contribution made when in work can be up to £4.7m. Providing disabled
people with the right equipment really could reduce costs long term. Reducing
isolation rates would reduce those needing mental health support. Having
correctly fitting wheelchair can save the NHS up to £154k in a person’s
lifetime from pressure sores. And, increasing the number of those able to work
would reduce the number of people on benefits.
So why aren’t we
doing more? I understand the NHS is stretched, but why are we having to fight
for such vital pieces of equipment. I personally would like a review on the NHS
guidelines for wheelchair users and have a discussion in parliament about how
we are going to support wheelchair users better. We fight for our chairs. Then
we fight for our access. It’s time, someone fights for us.
If you are one of
the 1.2million wheelchair users reading this and have had to fight to get the
correct equipment, I hear you. If you are still fighting for the right
equipment, keep going. It shouldn’t have to be like this, and something needs
to change.
If you’d like
to follow Kate’s journey then you can do so via her Twitter or blog.
How have you
found NHS wheelchair services? Did you fundraise for your chair? Do you
struggle to get equipment which is suitable? Let us know in the comments below!
