Friday, 8 June 2007

One piece of paper

This document represents a major turning point in my battle for the provision of services to enable me to lead as independent a life as possible with a disability.
It is a piece of paper stating clearly that my needs as a service user under the Fair Access to Care legislation are critical.
In other words, as a human being I am experiencing a level of stress and suffering that really should be attended to by those people employed by the government agencies which are there, supposedly, to help me.
It has taken three years to finally have been visited by someone who has instantly sat up and said "I will help you." Not only that, but someone who has the right forms, and knows what I need and when I need it. Three years ago would have been good.
The only time there was any attempt to 'meet my care needs' was during two hospital stays when the criticalometer went off the scale.
As my medic friends tell me, you have to be in utter crisis to get any help where health or social care systems are concerned these days. You have to be nearly dead.
That makes me angry.
There are thousands of people in this country who live in appalling circumstances and who are not getting access to the help they need. People in far worse situations than myself. People who cannot speak up for themselves as I have sporadically been able to do. People who may never get the visit I had this morning, even if for me it was a long time coming.
I am curious to see where unleashing the potential locked in the document above gets me.
Having my own copy of a specialist OT summary, and the above summary of my care needs means I can, if I so choose:
  • Send a copy to the local Wheelchair Service. I cannot wait a year just for assessment (let alone provision). And yet there are more than 700 people on this waiting list, some waiting 18 months. That's 18 months of neglect. Failure to improve a person's quality of life.

  • Send a copy to Social Services Adults and Communities. It is wrong that they haven't contacted me for 15 months to arrange an assessment and discuss direct payment so I can organise my own care package. It is wrong that my so-called case worker never returned my calls, then quit, and now I have no case worker. It is wrong that they told me last summer they couldn't help me because "You aren't terminally ill or bedbound and we don't have the funding."

  • Send a copy to the Disability Living Allowance dept in my fight to receive a mobility component of the award.

  • Send a copy to all the charities I am going to write to for funding for a wheelchair plus the ramps that social services will again take too long to provide.

  • Send a copy to my current health team. I am unhappy with the level and quality, or more importantly suitability, of the 'care' I currently receive. Sticking a person on various medications and hoping they will go away is not care.

  • Send a copy to my MP if none of the above respond. Hell, why not blow it up to billboard size and stick it in Parliament Square?

So there you have it. A bit of paper. Will it make a difference? Will anyone sit up and do anything? Or will there be more waiting lists, more apathy, more bureacracy? We shall see. I will need to think carefully about who to send this to, but at least it is now there, in black and white. Funny how the camera picked up shades of grey though, isn't it?


Wheelchair Dancer said...

Good luck!


Sally said...

That piece of paper will make a difference ... its concrete, it exists, it cannot now not exist.
Oh, so glad for you, finally to have it after so long.

marmiteboy said...

I'm really pleased that you can actually have your needs catered for now. It is an outrage that disabled people have to fight for what they need to be able to lead an active a life as possible.

I hope you get sorted soon.

seahorse said...

I know, and the fight takes the fight out of you. Been so fatigued all week, but onwards once strength restored.

seahorse said...

Thanks all btw. Could have sworn I said so and commented last night, but my brain is in a bad way at mo so it must've been the gremlins

Elizabeth McClung said...

Amazing - I did not realize it was so awful - thank you for this bleak but vivid depiction (as for myself, I can only fight the system about 1 week a month due to burnout).

18 months for a wheelchair assessment - my God!

I lived in a large UK city population 300,000 - which had one therapist for anorexia - I remember this vividly because I was almost coached to become bulemic becuase there was an excess of bulemic therapists - but to have it extend to such issues as Wheelchairs - infuriates me.

seahorse said...

Elizabeth - the abuse we suffer at the hands of the system needs to be tackled and publicised. I'm appalled there was only one therapist serving a population so large, but it's true here as well. I'm so used to being on waiting lists that this morning when someone phoned to say my grab rails were going to be installed, like today, I got very flummoxed and put them off. For being too quick :-) (I do need to check it's all been cleared with my landlady).
But I'm with you on burnout, and I think you are very wise to apportion your time. I don't know your circumstances well but if it's getting too much, maybe a social worker (if you can get one) or an advocate could help you too.
Best of luck, I'll stay in touch.

imfunnytoo said...

Love that piece of paper, Seahorse...hope it's worth more than the print...