Wheelchair services to be or not to be... that is the question

On happy smiley me - we have another kitten - black and white named bliss. I promise no more kittens unless we win the lottery and move to that mansion.

I deliberately wrote knew instead of new further down this post I am in that kind of mood.

I am not intending to read this post through after writing it so it remains 'surreal'.

I mentioned in a comment recently that my GP had referred me to Wheelchair Services.  I subsequently received a phone call from a lovely lady to 'explain' how this service works.

Now I have thought over and over again how I could possibly put the conversation that ensued into words.  BG from benefitscroungingscum.blogspot.com replied to my passing comment about this to one her posts that she had found such encounters surreal.

It has taken a little while for me to digest the information within the phone call and I agree entirely with BG.  Firstly trying to explain to someone what ehlers danlos is who has no medical knowledge at all is tricky.  In the end I suggested she googled in desperation.

She explained very politely that it goes like this - if one is deemed appropriate for an electric wheelchair following an environmental assessment (this basically means looking inside and outside of my home), then after a very long wait, one is issued with a powered wheelchair that one can use inside for four to six months then after that, they see how you get, they consider an indoor/outdoor model.  Another long wait.

She asked me why I could not use a 'walker' - crutches etc. and I patiently explained that I cannot hold my body weight through my hands, wrists, elbows, shoulders, spine ......... because I have ehlers danlos and this causes subluxation/dislocation and soft tissue injuries plus more.  The same reasons I cannot self propel a wheelchair.  Oh yes the more includes mind blowing PAIN.

She asked how I walk now, I explained that I am currently using knee braces but this isn't the only bit of me that is the problem to do with walking, you know the other bits included, feet, ankles, hips, pelvis..... the braces do not 'cure' me and with a combination, indoors of staggering around and hanging on to the furniture, the dog, and more often than not 'not' walking these days it is a precarious painful process. She obviously isn't interested as yet on the outside bit but for the record holding onto OH is OK after all these years of marriage but it would be nice to not deemed agoraphobic more than I already am simply by dint of 'the criteria'.  If you are getting lost here remember only the inside bit is considered for the first six months.

I did feel as though I was having to justify myself a little too much and a qualified doctor had deemed it appropriate that I need an electric lightweight wheelchair. Bearing in mind she was not medically qualified she was pretty invasive with her questions.  However I kept reminding myself that it was all in a good cause and not to be my normal bolshy self and continued to be charming.  Hiding well I thought, a pretty strong urge to terminate the conversation.  She being the facilitator so I thought to improve my mobility and independence.

She then explained that powered wheelchairs are bulky and that the environmental assessment would look at my home (fair enough) and if I couldn't get access to the garden with it then I wouldn't get one.  (Bear in mind they don't trust one outside of the home for up to six months).

I would need a vehicle with ramp access to take said wheelchair for the inside/outside chair.

I said that in the home was pretty rubbish but its walking outside as well that is an issue.  But the way they see it disabled people apparently don't need to go outside.  Inside and be grateful be damned.

She explained - that on the NHS only bulky powered chairs are available but that she would send me a letter explaining that I had been put on the waiting list for an environmental assessment.  I said save the trees as I had ascertained that from the conversation but she was obliged to not save the trees and send a letter anyhow.  Bearing in mind how stressful I was finding this whole conversation I thought my minor pun on the words environmental assessment including the trees was pretty good going.

I have left out other more ridiculous parts of the conversation because in truth thinking about that more just upsets me.  It would seem that the GP shouldn't have bothered frankly making the referral because they won't actually be able to accommodate my needs.  I don't have the money to buy the type of wheelchair which would be appropriate.  So it just leaves me wondering whether the system was set up and the criteria of need set up deliberately to make people realise its a no go situation.  Well it is if one is rich obviously.  Money and lots of it would be entirely useful in these circumstances.

(just read a little of this post from blog and have to say a whole paragraph has disappeared if you find it in or out of my blog please return to confused sender)

 One is also apparently given a dvla type test if one gets an outside/inside wheelchair.  I said, I have a proper driving licence and she said I would still need a dvla type competency test on eyesight etc. I repeated that I have a full driving licence, she repeated that it didn't make any difference.

Oh and if I had epilepsy I couldn't have one.

Well that did get me going - I don't but those of you who have read my blog for any length of time know two members of my immediate family do.  I asked her to explain further.  Well goodness me, we nearly fell out.  She explained that epileptics can't have a power wheelchair because its not safe.  OH MY GOD.   and that perhaps it wasn't entirely appropriate that she say this like this and that she needed to think carefully before stating that epileptics persay wouldn't meet the criteria!  Suffice to say I think she may be giving some thought to terminology.

I have missed out a fair bit of the conversation because frankly I still cannot believe my ears.  It has taken me ages to type this post I am fally aparty and if the continuity is poor its because I have typed a bit, and come back another day for a bit more getting more confused by the moment as time passes about exactly what bit of the 'wheelchair' and 'services' bit applies to each other.  Seemingly reams apart.

Now if anyone who works for wheelchair services is reading this its nothing personal and I am sure you didn't make up the rules so don't take offence.

My guess is that all that I will get out of this is a bog standard wheelchair which carer will need to push.  Expecting more was just a pipe dream I guess.

I apparently need to move home, I need to be able to drive a car I would not be happy to.  Mine is a small automatic and that is all me and my mini driving phobia can cope with.  So despite how much us disabled lot want to be independent it seems wheelchair services don't quite get it although I was left feeling that its me that doesn't quite get it.

Oh as an aside every time I try and have this conversation with OH his eyes glaze over with denial more than I am capable of bearing in mind I like denial. 

So having got all that out of the way - knee brace, jury is out at present.  It is pulling my hip out of its socket, my other leg is complaining big time (a bit like me) and other hip is not liking it at all.  members of the public do seem impressed though and continually ask me what I have done....or my OH with the does she take sugar principle.  I wonder if these random strangers would like to take me out to lunch whilst I explain tee hee...  It seems with a brace or caliper as someone referred to it the other day means my disability is suddenly real.  Its magic truly abracodabra (sp) along with the rest of my dodgy spelling.

I still can't crotchet... bendy fingers 'n all that boring stuff seem to make this more complicated than it should be.  I will perservere.

 After all that I have run out of brainpower to say much more.   I haven't written the whole wheelchair services saga because of moaney ol me reasons to be honest more in case someone googles wheelchair services and stumbles across this it may help them realise they are not dreaming its real life.  Its better than the telly - its drama.