This is part 2 of 3 read part 1 – here
I emailed Access to work and said I was very flexible (ha!) and that I could easily fit around him if he had a late notice cancellation. As I said my ROH managers sent an email directly to my Access to Work assessor explaining my rapid deterioration. I sent a few more emails, gently saying I could make any appointment he would offer me.
The assessor arranged a time 3 weeks earlier than the original appointment and to my astonishment was absolutely lovely. I was expecting an ogre on the phone, but he was really lovely, sweet and very encouraging. He said I just needed to get the quote, and a letter from wheelchair services explaining why they wouldn’t give me a chair. No problem I thought.
I had been told (I can’t remember who by) that my local wheelchair services didn’t provide wheelchairs unless you were housebound. That was a mistake right there – do not believe anyone at all – get the information straight from the horses mouth – always.
So I phoned them expecting to be told they couldn’t help me and they would write me a letter to that effect. That is not what happened.
A month or so before hand I requested my dr to refer me on to Occupational Therapy. When I didn’t hear anything for a few weeks I phoned the drs and the receptionist told me they wouldn’t see me as I wasn’t housebound and I should have physio. I was a bit put off by this, but accepted it and continued to wait for my hydrotherapy appointments .
The Wheelchair Services said that they would help me and I just needed a referral from my drs. I got so cross at this, but kept my temper and called my drs. There was a form that I had to fill out, so I drove over there and my husband went it and picked it up. I filled in in in the car, realised the form said 4 pages, but I only had three.
My husband went back into the surgery. No- there was only 3 pages, no he said, there is 4 – look it says here. And so on. Finally he came back out with the form. I filled it in, leaving the page which said the GP was to fill it in. He took it back in.
Within a couple of days I phoned the surgery to make sure they had sent it off. The receptionist said no as they didn’t know why I needed a wheelchair – on my notes my only problem was pain. I hit the roof at this point (bearing in mind the Drs had written a letter to Access to Work saying I needed one), but tried very hard not to let it show. I jumped on my computer and pulled up Evernote and searched for the letter. I told her to look at the letter dated xx by Dr Kazkaz from UCLH and told her that the diagnosis was there. I knew they had the letter as I took it in to the drs surgery myself and got them to scan it in there and then.
SHe said that she hadn’t heard of the first bit (Benign Joint Hypermobility Syndrome) and so they had just put the second bit – widespread musculoskeletal pain. I was furious, but again tried not to let it show. And I went through the rest of the form with her step by step. She didn’t even know what ‘cognitive impairment’ meant and had to ask me if I understood it as she didn’t.
I found this appalling in a drs receptionist. In fact I found it all awful – they didn’t understand something on a medical letter, so rather then even looking on wikipedia, asking a dr or asking me they just wrote down what they understood. This explains why Occupational Therapy wouldn’t see me.
They sent it off, I phoned wheelchair services to make sure they got it and to get an idea of waiting lists – oh it depends on your need – ok but can you give me a ballpark? Gah, all so frustrating for someone like me!
It is worth pointing out here that I am not known for my patience. That I work at Jen pace and get incredibly frustrated at everyone who doesn’t keep up. I am having to learn patience, as I began to found that as I got more wound up by things my fatigue and pain would increase noticeably and dramatically. If there is anything which causes an adrenalin/cortisol spike- triggered by the amygdala having a fight or flight response I have chronic, sharp pain in my joints. I have been meditating for years, even being on quite a few Buddhist retreats, but I have had to increase the amount I am meditating quite a lot.
Anyway I went along to GBL and tried out the chairs. I wanted a fixed frame lightweight one and I tried out a couple and then Ian showed me the Quickie Helium. Wow, wow! It was amazing – it was like it responded to my thoughts. I spent about half an hour whizzing around the store. Ian said that he was impressed by my wheelchair handling skills and felt comfortable recommending this chair, without the tipping wheels (kind of stabilisers – yes it is that responsive a chair).
I guess I should explain my wheelchair ability. I spent about 3 years volunteering when I was at school/college at a disabled playcentre for kids, I loved it so much it was wonderful. I would often lead sports activities, look after the soft play area (at the time Power Rangers had first come out and I had a lot of bruises from kids pretending to be them and landing on me) and do all sorts of great things. It made me so happy. I would often move their wheelchairs around and the best way to learn to do this was to drive it yourself. I even went on camp one year where my major responsibility was a girl with spina bifida.
In addition my mum was in an accident in the gales of ’89. A stable wall fell on top of her. She was in hospital for months and months and we didn’t think she would live. When she came home she was in a wheelchair and we didn’t think she would walk again.
So, I learnt to drive her wheelchair – I even practiced and pass my Brownie Guide agility badge in the wheelchair.
This explains my wheelchair skills. But I still had a lot of questions about how to handle the chair and Ian very kindly offered to take me out and show me some when I picked the chair up. We talked about the 6 weeks it takes to build the chair as it is highly personalised. I could even choose the colour – so I went for purple, obviously!
He explained to me that I could request an NHS wheelchair voucher and use this with the Access to Work money to fund my chair. Then one of those strange coincidences happen, it turns out that this man, based in Middlesex , provides a service for Thurrock wheelchair services. So he said he would probably see me soon.
In the meantime my walking was deteriorating further and I decided to hire a chair from the Red Cross (November). Bless the Red Cross for providing this service, but oh the chair is made of steel and I struggled to lift the bloody thing in and out of the car and propelling anywhere for a period of time was a nightmare. But still, I had wheels and I was mobile. I don’t need to worry about collapsing in front of anyone and I can go out again!
I kept hassling wheelchair services for an appointment, they offer me a short notice cancellation and I jumped at it. I turn up in my Red Cross behemoth and wait to be seen. The occupational health lady is lovely. But when she shows me what I can have – a standard self propelling that folds up I burst into tears. I tell her how much I need a fixed lightweight chair so I can get on and work, that fatigue is an issue for me and if they won’t provide me with a chair like that she needed to write me a letter to Access to Work, right now explaining that. I had my iPad, food and water and I was not leaving till I had the letter in my hands.
She went and spoke to her boss. She came back and tells me she has got someone else to cover her next appointment. I apologised and said that I was losing my life, that I am still trying to work and I needed my life back, and to be able to go back to being as independent as I can. So that I can run my business and go and see people without my husband having to be there to help me.
She explains that she has to see me in this chair she has just given me, so we go out and try it around the grounds of the hospital. Which is not designed for wheelchairs at all, uneven paths, dips which leave my wheels spinning, ruts and uneven bricks. But she can easily see me tiring by the minute. She agrees that I qualify as an active user and that she will try to get my an appointment asap. She brings me tea and then disappears for a while.
She comes back and says they can offer me an appointment in a week time and could I make it? Yes, I could – the bonus of being a freelancer (I have left ROH by this time).
One of the biggest things I hate about this stupid illness is how exhausted it leaves me. In the past I would never have cried at work or in a situation like this but now I just can’t help it.
Going into this appointment with the attitude of “this is what I need” was much better than going in with a victim mentality of being grateful for anything that I am given. This is how I am, I expect people to provide me with equal access, it is a law and I am not going to be pathetically grateful for help, I am legally entitled to it.
In case it isn’t clear I am quite an articulate person, English is my first language, I am not afraid of challenging authority, I am not cowed by Drs (even when I have to take my husband in to get them to take me seriously, which is a whole other issue), and I do expect to be heard. As such I am privileged, in addition to all of that I am white. What if I was an immigrant, wasn’t comfortable in challenging authority or confident in my English? I would not being doing as well as I am on this disabled path. I am highly educated and I still struggling to find my way through this maze, not to mention the bloody forms. I will come back to this point at a later stage.