After I rested for a while and wrote yesterday’s diary entry, I did try ringing the council again to chase them up about my application for housing on medical grounds.
A woman answered the phone got my name wrong, then my age wrong, then with no warning read this out to me from her computer screen:
“Ah yes, he’s done it – yesterday,” I had a moment of soaring optimism then..”You’ve been assessed as still in band D. He got the medical evidence and there’s no change. You are still in band D. ”
Wrong-footed I said: “What?” then, “what do you mean?” then,”who did he approach for the medical reports?”
She couldn’t tell me.
I’m thinking that if he went to my GP that could explain it! The GP’s I’ve seen in my surgery have no idea about CFSME. On my medical notes it doesn’t highlight “CFSME” as a primary diagnosis, something that GP records can do.
Although I copied them into the entire letter and medical evidence I sent through to the council, I’m willing to bet they did nothing more than a cursory report like they did with my DLA application.
They gave one word answers on the DLA form that was sent to them by the DWP after I was given a Tribunal date. It was embarrassing to read, so little effort was put into completing it properly. It looked like it had been scratched in the boxes by someone who couldn’t write more than one word sentences.
“I don’t know who did your medical reports. He’s out at lunch. Can I get him to call you?” the voice on the phone replied.
My mind is hamster-wheeling. Please tell me that applying for a council home isn’t like all the other systems weighed against people with CFSME, please tell me that the problem with the medical evidence isn’t that CFSME is so poorly understood that the medical implications aren’t communicated properly in a housing report.
I’ve already been down that road with DLA.
Or, hang on, perhaps that’s unfair on my GP. Maybe it’s the Council that can’t do anything more because even having a disability and a home that is making me iller STILL isn’t enough to have a priority. Christ almighty! So I’m not homeless, I don’t have a child, is that what’s keeping me in Band D?
“I’m going to appeal,” I said, “what’s the process now? Will I receive a letter?”
” I don’t know,” came her utterly unhelpful reply.
“I rang a couple of weeks ago and I was told I’d receive a letter.”
“Oh well you should receive a letter then. It’ll be sent out by 2nd class post so maybe tomorrow, or Friday?”
I said goodbye to this hopelessly uninformed woman and rang off.
I sat back into the cushions on the back of my sofa. I’d sat up on them from where I’d been lying down to make the call. I sat there some more, sifting my options through a haze of post activity fugue. My own words were buzzing in my head, in the air around me.
By the time they’d disappeared and I was back in the familiar silence with the IPAD playing The News in the background I tried to call Citizens Advice. There was no answer except for a message saying they were only open in the mornings.
I went online and called Shelter. They have a helpline in London open in the afternoons from 2:30. I called at 2:55 and the answerphone still spewed out a minute-long set of options, pointing people to where they can access more advice before telling me no-one was there because the lines were closed and offering me a central number.
I rang that. Another message gave me more options I could access before the option came up to speak to a helpline operator. I dialled that and was told all the lines were engaged and that I needed to call back.
“What, and have to listen to that minute-long meandering intro again?” I thought. “I can’t face doing that right now, thanks.”
I sat back into my cushions again. I rang a local disability advice line who were helpful. First off they asked if I was disabled. “What, do you mean am I in receipt of DLA or PIP?” I asked.
“Yes. Or do you have a blue badge or ….”
“I’m in the ESA support group due to a long term health condition.” I said.
“OK.” That makes me disabled enough to speak to them it seems. “I don’t have DLA or PIP,” I said, “I was at the point of Tribunal but wasn’t well enough to attend.”
They took my details and told me someone would call me back or email me. They haven’t.
Then I did the thing I promised I’d never do. I wrote to my current landlord who I am desperately trying to get away from – the one who caused this situation in the first place and is the reason for me applying for a council home.
I said: “I’ve been a tenant in this flat for almost 2 years now. It is cold and it is damp. I’d like to move. I am aware you have many more properties in this area which I’d like to be considered for. Could you write back to confirm.”
Thing is, I’ve asked him before and he avoided answering my email. I can see why – he’s got a tenant captured in a flat that is totally unsafe and below standard. If he moves me, he’s got to go through the whole process with someone new all over again.
While I was resting on the big brown floral cushions every.single.last.moment of my DLA application and appeal came back to me.
It was long, drawn out, stressful and unsuccessful and took up so much of my energy whilst it was going on that it felt like I had a full time job.
I look back on that application now as a waste of health.
Not a waste of time you understand, it was a waste of all the to-ing and fro-ing I had to do to Citizens Advice, a waste of the precious mental energy I have to form-learn, then form-fill, a waste of energy going to the post office which is far away to get everything in the post, a waste of money sending everything by recorded delivery and a waste of optimism and hope and belief each time I sent something off that despite the system being renowned for being weighed against claimants I would be any different from anyone else who’s been shafted by the stringent reforms to welfare.
I wasn’t different.
People who don’t have CFS or ME don’t understand how much energy these things take. They take an enormous commitment of sustained mental and physical energy at a time when energy for anything in life is in short supply.
Stress really affects people with CFS and ME and because of that, so does the ups and downs of an application and appeal process.
It’s not only my body that doesn’t work properly, it’s my mind as well. Starting an appeal process for a council home would end up where exactly? How long? What does it mean I’d have to do throughout the time of doing an appeal?
I thought about my friend who has a brother in my area who is suffering from a pervasive degenerative health condition. He’s in a wheelchair and has a carer. He had to get his MP involved with his application for council re-housing. His MP had to take up the cause because he was turned down and attend every meeting with the council with him, in order for it to be successful.
You think you’ll have help and support to take you through these things but the reality is that aside from a couple of meetings with the people at the CAB, they send you off to source all the medical reports yourself, gather all the evidence together and fill out the forms yourself. You have to do literally everything on your own.
For someone with ME that IS doing a full time job and is every bit as damaging as going to work will be.
Yes, I will phone the CAB and SHELTER and I’ll listen to what they have to say, of course I will. I’m not closed minded, I’m wary.
But with council housing waiting lists already stretched to a wait of years and years for people far more ill and needy than I am, will it really be worth the impact on my health to fight it to the bitter end?
I honestly don’t know if want to do or can do something like that again.
My health is more important – oh isn’t that decision so, so ironic, considering how much my home is affecting my illness in the first place!
© Lindy 2015