Help Linka get a life-changing wheelchair

Hi, I’m Linka and I need your help to leave the house again.

For the last 5 years, I’ve been housebound. At first, we thought that the only things keeping me from enjoying the world outside were the stairs in my old house and life under lockdown. Then in 2022, I moved into a wheelchair-accessible bungalow and not long after, tried to take a trip to the park. That’s when we discovered that the real issue is that my current wheelchair actively causes me harm when I use it. It causes dislocations, pain, and puts me at risk of injury and symptom exacerbation if I use it for more than a couple of minutes at a time. That was the last time I left the house independently.

I am fundraising through this Gofundme to afford a suitable wheelchair that will allow me independence both within and outside the home.

Being unable to freely move around has resulted in my physical and mental condition deteriorating a lot over the last 5 years and many of my disabilities being exacerbated. I’ve become increasingly isolated and lonely, which has in turn impacted my mental health severely and has led to me developing agoraphobia, which I can’t do anything to address whilst trapped at home.

Not having a suitable wheelchair affects every part of my life. I miss the little things like popping to the corner shop for a pint of milk or going out for a little wheel around the block on a nice day. Having to travel to appointments via patient transport on a stretcher impacts how I access medical care - a number of departments are unable to accommodate me at all, resulting in a loss of treatment for some of my conditions. Where I can be seen, I am entirely reliant on the patient transport service, and can face waits of over 3 hours to be collected from hospitals that are a quick 10 minute taxi ride from my home.

I am also struggling to recruit a full care team to cover my allotted hours, meaning I am often alone for basically the whole day. I spend this time in bed, and have needed to buy a commode for my bedroom to keep myself as safe as possible when no-one is here to look after me. It’s been degrading and upsetting to see my needs increase. A wheelchair I could actually use will allow me to move more safely around my home, even on days I don’t have the paid care I need.

The NHS agrees I need a specialised electric wheelchair, my specialist consultants agree I need a wheelchair, but due to red tape and insurance reasons, they won’t prescribe me one. Sadly, as I am unable to work and rely on benefits, I also can’t afford to buy one myself.

The wheelchair I need is a Permobil M5 Corpus. I need this model because it will allow me to do a full flat recline which is essential as someone with POTS, ME, Long Covid and spinal instability, all conditions that require me to be able to lie down at will, and will make accessing health care significantly easier if beds are not available. This chair also has features that will allow me to safely reach cupboards or to lean forward towards worktops which I hope willlallow me to regain my love of cooking as well.

On top of the basic model, I’m going to require some additional extras - this includes custom seating options to prevent dislocations and subluxations, additional attendant controls to allow my carers to take the wheels if my symptoms flare when I’m out and about and I can no longer safely wheel myself, and an adapted steering stick to meet my needs. I’m in the process of getting a quote for what this will cost so the funding amount will likely increase at some point when we have the full details.

I’m launching this crowdfunded on my birthday - I’m turning 38, but feel stuck at 33. Life has been the same day repeated over and over in a seemingly never ending cycle. For me, lockdown never ended but the world moved on without me. A wheelchair is something that no-one should have to crowdfund for, but sadly the structures we have aren’t set up for people like me with multiple conflicting conditions and complex needs. Any help that you can give, even just sharing this crowdfunded with your communities would be so deeply appreciated and the best birthday present I could ask for.

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FAQ

Why is this fundraiser not in your name?

A friend is organising this on my behalf hence this crowdfunder is set up in her name.

Why can’t you get a wheelchair via the Motability scheme?

It would be too expensive for the model and adaptations I need and I don’t have a spare £600+ a month to rent via this scheme.

Why can’t you look for grants?

There are very few grants out there for people my age, and at present I do not have the energy to do this myself, nor the carer capacity to research and apply. If you know of an easy to apply for grant that I would definitely be eligible for, you are more than welcome to share.

Why won’t the NHS prescribe a chair?

Ultimately - they view me as an insurance risk. I have non epileptic seizures and the NHS use the DVLA requirements for prescribing power wheelchairs. Therefore, I am not eligible for one. I have never had a seizure in a wheelchair, and will never leave the house without a carer, and will also have personal insurance to cover these risks myself but that isn’t enough for the NHS unfortunately.