Very few reasonable adjustments for disabilities

No matter how hard we try, it seems the decks are continually being stacked against people with disabilities. This is a particularly epic week for me: tomorrow I am meant to have my usual follow-up with the Community Mental Health Team (CMHT) and Friday I am to be “examined” yet again by ATOS Healthcare on behalf of the DWP. Unfortunately what should be fairly simple and straightforward accommodations for my personal situation are anything but.

My health concerns are rather complex but namely:

  • Severe Clinical Depression
  • Osteoarthritis in both knees
  • Osteoarthritis in my spine,
  • Spinal injury
  • Incontinence (bladder and bowel)
  • Irritable Bowel Syndrome (IBS)
  • Chronic, debilitating pain
  • Insomnia
  • Fatigue
  • Anxiety
  • Bulimia (since I was 12 and I am now 45 and only just being treated)
  • Obesity (weight gained over past few years)

As I have explained before, shortly after relocating from London to Wales I had a number of health emergencies. It is no stretch to say that I am very lucky to be alive. This is what the Vascular Surgeon finally told me 3 months into recovery and my medical records are a testament to that. Life is a blessing that I am not taking for granted. The downside of all of this upheaval is that my plans to have my freelancing business up-and-running and showing a decent profit fell by the wayside.

I have spent more hours than I care to think about to get various entities including GPs to take me seriously., which I’m sure many people with Disabilities can relate to. If you are not fortunate to have deep pockets and a sizeable bank account, then you are at the mercy of the shambolic nature of the state system you need help from.

When I fist moved to Wales in April 2009, I had redundancy money behind me. The move was a conscious decision to live somewhere that would cut down on the extortionate amount of money on basic living and travel expenses I’d had to shell out in the Capital. It was bad enough when I worked in The City of London and earned £33-42/year as a Marketing professional in investment banking. But having a lot less than that to take care of myself for a year whilst launching my start-up was challenging, but manageable. Iain Duncan-Smith should be quite smug that I could *afford* to be able to get on the bus to Cardiff..

Ultimately I am grateful for the pain of losing my job because it saved my life, but there were a whole new set of problems I couldn’t have anticipated. It started with a bad fall in my old London flat as I was preparing to move. Over a matter of weeks I noticed that my left leg was three times the size of the right and had turned quite dark. This is what set me on the path that I have since travelled.

The rot set in when got my first diagnosis in June 2009 – and a very troubling one at that.

I was unable to walk without extreme difficulty and mostly dragged my elephant leg behind me when I was forced to go out. I was alone and isolated. There were no friends or even a causal acquaintance that could help. I was spending huge amounts of money to-and-from hospitals for tests, MRIs… you name it.  To make things worse my GPs Surgery was very unhelpful (and they still are). I was forced to spend £60 round trip on taxis for help at the hospital instead of the GP walking to the next block to see me since I was banned from the Surgery during recovery. If I wanted help from Social Services – then I was going to have to pay for it. Suffice it to say that post-Op I was doing all the things I wasn’t meant to be doing because I couldn’t afford the fees. I still can’t.

Before I digress any further, the money has long since run out. I have no savings whatsoever. I am very embarrassed to have to admit that for only the second time in my adult life I am needing help getting back on my feet. It was one thing was I was fit and healthy and used to travelling without any inconvenience beyond the usual headaches of public transport. It’s altogether different proposition now that I am disabled and poor.

The Benefits I’ve had to fight for to no end don’t even begin to cover rent, utilities, food and transport. I have had to make hard decisions about much-needed medical interventions simply because I can’t take public transport, there are no services for disabled people in this area – and I can no longer afford the cost of taxis to everywhere.  To that end I have tried desperately, for a week to convince the CMHT Psychologist to do the  follow-up over the phone. The cost of the taxis combined with the usual 40 minute wait to get one for the return journey is too much. I already know that physically I am not up it and financially I really need the money for groceries and utility bills.

I’m from a professional background that says why is a conference call so difficult?

It is, apparently.

The first few times the Psych was going to return my call. Never happened. I phoned again this morning and the Admin consulted with him, it was decided that a decision would be made tomorrow at the time of my appointment. Bear in mind that If I don’t turn up, I can be dropped from the service. The woman on the phone was quite cross when I pointed out the obvious. They’ve been seeing me for occupational therapy, physio (that didn’t work), etc. for over a year now. I’m not some unknown entity.

So here I am with no idea whether or not the Psychologist will be able to accommodate a phone call that is obviously quite an inconvenience for him.

Note: ATOS is another story. I’ll have to leave that for tomorrow.

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6 thoughts on “Very few reasonable adjustments for disabilities

  1. Pingback: I still don’t want to live this life – the real world 2 months #afterESA - The Creative Crip

  2. Pingback: From Passive to Active Disability Campaigner | The Creative Crip

  3. Crossing my fingers for you regarding ATOS – they infuriate me and are clearly utterly ignorant (or willfully ignorant…) about disability.

  4. Sorry to read about your hassles with NHS Wales, which seems to be rapidly going down the pan. Have you tried getting Assembly Members on board. They are redponsible for health after all and everyone in Wales can get 5 of them to work for you, constituency and list. We’ve always done that whenever health or education screw up our kids. Best of luck. 🙂

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