Good news and bad news

Good news and bad news

My job offer is now formal – I’m so pleased.

I have a lot on at the moment.  Our local council has decided to remove access to all the central, level blue badge spaces in the town centre and add more to the existing car parks on the outside of town.  They are much too far for disabled people to walk to.  For over a year as chairperson of the local access group we’ve been fighting the decision and trying to get them to come to a compromise, but they haven’t been interested.  Yesterday they published the official order to make the changes, so I’m madly working on a response to the formal consultation.

My wrists have chosen now to flare up as well, which is making life quite difficult.

Credit to: Michel Meynsbrughen www.prestonotes.c.la

Credit to: Michel Meynsbrughen
www.prestonotes.c.la

On Speeches and Hospitals

On Speeches and Hospitals

I haven’t updated in awhile, because I think I’ve been in a bit mentally exhausted.  I seem to have something on every day – whether it be medical, or the voluntary work I do for on disability access – I could do with a break, but the show must go on!

I had an assessment at the Royal Orthopaedic Hospital to see if they will accept me for their three-week inpatient pain management programme.  It was a bit of a nightmare with my electric wheelchair wheel dying just as we got to the hospital, only for them to say we’d been sent to the wrong building anyway.  I had to wait for a porter to get me – who came half an hour after my appointment time.  I have to say my anxiety levels hit the roof and exploded through.

It does involve a shared ward which is quite a worry, as I can’t deal with light or noise and sleep very lightly, so other people snoring is a big worry and not being able to go to bed when I’m shattered as we have to be up at 7am which is going to cause loads of problems for me!

Credit to Melodi2

Credit to Melodi2

In other news our local council are making plans to make the High Street buses, taxis and motorcycles only.  This is causing a lot of concern as this is the road a lot of blue badge holders park along to access the town.  It’s also going to cause mayhem in all the rest of the town, as when one part closes it causes deadlock.

I’m on the committee of the local access group – just become acting Chair, in fact.  I’m trying my best to get the council to reconsider, or even just to respond to my emails – without much luck.  I was feeling a bit alone, until yesterday when there was a flurry of supportive emails from people including councillors.  Then yesterday I made a speech at the local cabinet meeting on the issue – which is quite funny, as I’m the person that skipped most of English in year 9 to avoid giving a talk, but it went pretty well.

It seems to have made some difference with the right people getting involved now.  So here’s hoping we can make a bit of a difference here.

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