When those who are meant to help do not

When those who are meant to help do not

My house is completely unsuitable.  For a start it has very steep unadaptable stairs that I struggle to get up on good days, and not at all on bad, it has large steps at the front and back that my wheelchair can’t get up (and it needs to come in to be charged), the parking is quite far up the road which is very much a struggle, the rooms aren’t big enough to have the equipment I need to help me, and the road has the highest pollution in Colchester – which I’m allergic to.Our local council housing works on the system of ‘bands’.  Everyone is put into bands according to need with A being the highest, going down to E.  There are all kinds of categories that move people up bands, such as overcrowding, being homeless, fleeing from domestic violence, or medical needs.  Band C covers people for ‘minor medical need’ and band B for ‘major medical need’ and A for ‘severe medical need.’

We were originally in band D, and put in a medical claim, that moved us to C.  Sadly, band Cs have pretty much no hope at all of ever getting a property, so we put in a second medical claim.  In the meantime I had accumulated a stack of medical evidence, and shiny new diagnoses, and had become a wheelchair user.

One of the symptoms of my conditions is that I find noise very difficult, as it increases my pain.  There is a scientific reason for this – it’s due to sensory overload, so we thought it would be really nice to have a bungalow, than a flat where there is a much greater chance of noise.

So we put in for another medical claim – with piles of evidence, and it again came back at a band C, but saying we could bid on bungalows.  That’s about as useful as a chocolate teapot – as you will never, ever, ever get a bungalow on a C.

The difficult part in all of this is how much we can kick up a fuss.  I have strong work and family ties to the housing department making the decisions.  So I  know the people involved, which makes it a little awkward to say what the bloody hell kind of decision is this?  When family members did ask questions, she got quite vague responses, as they obviously felt they did not need to respond to a member of staff in the same manner as a member of the public.

We were recommended to speak to the Housing Portfolio Holder, a councillor, and we asked if he would act as an intermediary to ask the questions we wanted answering, in order to form an appeal letter.

At first he seemed amenable, and asked a couple of questions on our behalf, allowing us to ask him, then rewriting them and sending them without our name onto the council.  But then he got the gist of a question wrong, and when politely corrected sent back this charming response:

“I am afraid that I do not see why you cannot ask this question yourself and, therefore am not prepared to continue to act as an intermediary. It strikes me that going to appeal at this stage is both unnecessary and expensive.”

I am quite offended by this, the tone seeming very rude, and abrupt.  We had already explained why we were asking for him to act as an intermediary, and had asked him as the councillor overseeing the housing department.

Secondly, appeals don’t cost, and third – I do in fact find it entirely necessary, as I’m sure he would too if he was struggling to reach his own bedroom each night, due to the fact the council are not applying their own policy correctly.

Honestly, these people are meant to be elected to help us – yet on the first time we ever ask for a councillor to help us, get this response back.


Frustration.  Credit to Staci Becker

Frustration. Credit to Staci Beck


The report from Occupational Health arrives

The report from Occupational Health arrives

Credit to Marcin Rybarczyk www.wizualnie.com

Credit to Marcin Rybarczyk www.wizualnie.com

I received my occupational health report this morning, which made for interesting reading.  I might be a little cranky today, okay?  So keep that in mind.  My work deciding not to pay me anything for the month also didn’t help.  (They have reconsidered after many phone calls and emails.)

So, the first thing the report says, on the very first page, is that I’m fit to return to work immediately – remember that!

Then page two began with an introduction from the medical company who said I’d been referred so my employer could find out what my conditions are, whether me working 22.5 hours a week is suitable, how much sickness am I likely to have, whether I still need to work from home and why, and finally whether I’d be covered under the Disability Discrimination Act (NO, it doesn’t exist anymore).

They continue to say I have a number of conditions which include a “so-called connective tissue disorder.”  What the hell is that meant to mean?  There is NOTHING so-called about Ehlers-Danlos, thank you very much.  Then they say I have Fibromyalgia, which is “aches in various joints.”  Oh, I wish.

Then the report writer passes it over to the doctor.  Thank god, I’ve had enough of that little weasel.

The GP clarifies my actual conditions, where I’m at with medication and medical treatment.  That I scored highly for anxiety and depression, and that I looked ‘profoundly unwell.’

He then says I am currently unfit to return to work, although he notes I would like to continue working. He says office based work is completely unsuitable currently due to high levels of pain and fatigue, but perhaps some limited home working would be good if it could be accommodated.

He ends by saying he thinks I would be covered under the Equality Act, under the disability provision.

But now we’re back to the weasel of a report writer, who says again I’m unfit for work (so why did page 1 say I could go back immediately?)  He then says I undoubtedly have genuine physical and non-physical problems and that he was surprised to see I have been able to achieve the levels of work that I have over the last few years.  Aw, that’s nice.

Then he turns on me and stabs me in the back.

He says commercially they need to consider if they cope with high levels of absence, whether I can work from home with the impact it will have on their ‘commercial value,’ and says he sees no likelihood of recovery for me, as my conditions are degenerative and not cureable.

Wait, we’re getting to the good part, where he shoves that knife in.  “From my reading of the referral note further home working may not be possible which then potentially leads to a question of capability.  It would be of course for the company to consider the questions and answers regarding home working, and if not a possibility than a careful response needs to be formulated to avoid critics in the event of any challenge.”

So reading between the lines, I will clarify for everyone.  We recommend she works from home, which is perfectly reasonable, as she has been doing that for the past three years in the same job, had low sickness levels, and has been damn good at her job.  But you probably can’t be arsed to put that in place, so just kick her out on capability grounds- but do it carefully so she can’t sue you.  Oh, then we’ll send this report straight to her so she can read this little shitty suggestion.

Well, fuck you too.

Struggling On

Struggling On

I am really struggling at the moment.

The pain is unrelenting.  I did something to a tendon in my foot which was agonising, and I couldn’t walk for days.  It took ages to heal, and the instant it did I pulled a muscle in my chest/shoulder.  I couldn’t breathe without terrible pain, and if I moved it was crippling.

It finally healed, and my lower back started.  My lower back always hurts – it hasn’t stopped since I was fifteen.  This is worse, so much worse.

I am also completely, and utterly exhausted.  Bone-deep fatigue.  My eyes are closing against my will, and I can’t summon the energy to do anything.  I’ve been going to bed around 7-8pm and sleeping through until late morning, and struggling to get out of bed.

I am currently at work, trying to cling on, too scared to take sickness as I’ve already had one sick day since I’ve been here, and three days annual leave.

Please let this day end.

Sleeping when studying - Nakhon Sawan, Thailand

Fatigue – Nakhon Sawan, Thailand (Photo credit: Wikipedia)

Fighting the System

Fighting the System

One thing that really frustrates me is that whenever I try and help myself, I find myself banging my head against a brick wall. Just some examples:

If I want a simple referral to a consultant, I seem to have to jump (well, stumble!) though a million hoops first.

I have been waiting over 18 months – not even counting the waiting list for Social Services first – for a disabled bay to be put in, and it’s still not done.

I was given a wheelchair on the NHS that didn’t fold, so I couldn’t really use it properly as it was such a nightmare to get in and out the car.

I have been turned down for Disability Living Allowances twice at Tribunal level, despite lots of medical evidence. (This will be detailed in another post, as I have lots to say about that!)

The council ‘band’ people in categories in order to be eligible for housing. I have been put in a crap band that means I’ll never be able to move , even after an appeal twice now, and have called my medical conditions minor.

I try my best to work, even though it almost kills me to do so, and it’s the reason why some people don’t think I’m as bad as I am.

Okay, just feeling a bit frustrated at the moment!

Credit to ralaenin

Credit to ralaenin