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It’s just a saga now.

05 Tuesday Dec 2017

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I’m sorry for the gap between posts. I’ve had a cold and apparently when you’re already chronically  ill, a cold turns into “three weeks of being mostly asleep”. Not that much has happened in terms of housing; the council move at a rate that doesn’t exactly suggest that they work with people in danger of becoming homeless. Also, a couple of weeks ago the Guardian’s Disability Diaries , which I was a contributor to, were published and there’s been a lot of good feedback. I hope it helps in a small way to change public preconceptions about disability of all kinds.

Before I “update” (spoiler: no actual progress) I will share some exciting news. I finally decided to make a Patreon page.  Readers of this blog are, of course, under no obligation to sign up, but this blog is just one small aspect of what I hope to be able to do in terms of disability awareness and activism. Already I’ve reached my first funding goal, which means I’ll be meeting with a designer next week to revamp the style of this blog, ahead of registering a domain name. Fancypants!

So, the housing saga, and it is a saga at this point. It’s almost a year since I was told to find somewhere else to live as soon as possible, and I keep hopping back and forth aimlessly between the council and private rental options. Neither have been productive.
This month I’ve been focussing on the council, as I received a letter last month telling me that the “medical officer” had written to my GP to verify my various health claims (so that I could be referred to the council’s “housing association” partner). First problem – aside from the fact I went through four GPs there in a year due to them all leaving or retiring, my surgery closed down at the start of October after failing its CQC inspection. I had an appointment with the named GP at my new surgery last week to explain my housing needs and she seemed understanding and receptive, though I feel bad asking already-overstretched doctors to do things like this, when I’ve already uploaded reams of medical evidence to the council’s housing denier bot. Second problem – As I learnt in January when my mental health took a nosedive, the hospital mental health team’s notes don’t get copied to the GP’s system, so this sent me into a small tizzy when I realised that a GP would be unable to confirm the mental health history I had outlined to the council. Trying to rectify this was a small saga in itself:

I called the council, on the number at the top of the letter. There was a housing extension there, but as it turns out, the officer was there only for questions about rent. Any other housing queries had to be sent to the Housing Office. No there is no direct number, or email address. No he could not pass a message onto the Medical Officer, because they didn’t work in the same building. So, lacking any other option, I went back to the wretched hive of scum and villainy known as the Enfield Housing Office. “Do you have an appointment?” No, because there is no way to make an appointment. I took a seat as requested, and watched various vulnerable people having their needs denied. Eventually my number was called and I wrote down the information to be passed onto the medical officer. “She’ll call you, wait here and she’ll call you” “Is she not here?” “No, she’s upstairs”
So, I sat in the Housing Office for 90 minutes until someone who couldn’t be bothered to come downstairs and talk to me phoned me instead to verify that yes, someone had passed on the post-it note with the mental health team’s details. How very dehumanising. 

Then, on the 22nd of November, a text from a lettings agency:
“Enfield Homefinders have forwarded your contact details” – without my permission to do this, I might add. They included a link to a property on RightMove. It is not wheelchair accessible. So, the council gave a third party my phone number so they could advertise properties to me, without also passing on my access needs (which go beyond just needing level access). Superb. I was polite in my reply, but made it clear that I didn’t want either of our time being wasted by being offered unsuitable properties. I strongly suspect that this is nearing the extent of what the council will actually do for me, although I’m not aware of what their legal obligation is if they don’t actually have any suitable properties themselves.

 

 

 

Dirty Tricks

14 Monday Nov 2016

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I came home from 12 days in Chicago to the inevitable brown envelope: my PIP assessment is on November 23rd. That’s under a month after I sent the forms off. Last time it was an 8 month wait so I’m impressed at the speed. However I learnt two somewhat disturbing things from the phone call I made afterwards:

1. In August they quietly “ended the trial” of pre-paying cabs for claimants who needed them to get to their assessment. Instead they now pre-approve claimants for reimbursement and pay them back up to two weeks after the assessment. This means that claimants who cannot afford the return trip in the first place (which would be about £60 in my case for example) are at a distinct disadvantage. Remember that “how did you get here today?” is a commonly asked question to those with reported mobility problems, and taking public transport to the assessment can count against anyone who has claimed they have problems with public transport – even if there is no other way for them to GET to the assessment!

2. I asked if I could have my assessment recorded, after last time when the assessor might as well have written down the opposite of what I said. It turns out they now ask claimants to bring their own recording equipment – good because they can’t now say “sorry we don’t have enough”, but bad because it has to be a very specific type of recording device (dual tape or CD recorder) which most people will not have or many be able to afford. They do not accept any kind of digital recording, as both parties have to have a physical copy of the recording by the end of the assessment. A quick Amazon search shows that dual tape recording devices are not readily available, and definitely not cheap. By insisting that claimants use equipment used primarily in police and court situations, Atos are ensuring that a minimal number of assessments are recorded using a method usable in an appeal. (A covert digital recording would be fine for a claimant to personally review what had happened, but that is all.) One easier to find alternative to the double-tape recorder is to procure two identical single recorders, but again for most people this will come at a cost.

 

I knew already that the odds were stacked against the claimant, but these extra costs and tricks make it extra unfair.

untitled (kicking against the tropes)

26 Monday Sep 2016

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I am not a good cripple
I am not brave or inspirational
I was not a courageous child
Nor injured in war

I do not bear my cross with grace and patience
My honesty is unpalatable, humour too morbid
Cousin Helen can go fuck herself
I create uncomfortable silences

There is no yearly event for me
My illness is not marketable
I am not “battling” anything
(It’s a war of attrition)

I am not a good cripple
Sympathy makes me sneer
I have to choke out thank yous
And pretend I don’t resent it

DWP: Disabled Woman, Persecuted.

12 Thursday May 2016

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I had two weeks of breathing easily, knowing I had all I was entitled to.
Two weeks of planning for the future, and not fretting for it instead.
Two weeks of optimism. Two weeks of happiness.
That’s all I got.

It took me 16 months after applying to get my ESA and PIP approved, the latter through a gruelling appeals process. It took another 5 months to convince the DWP that I was eligible for Severe Disability Premium so I could afford to pay for my own care. That fight took more energy than I thought I could ever muster; it could have mentally broken anyone, even if, like me, they didn’t already have serious mental health problems.

Then on Monday I got a letter. The brown envelope.
My rate of ESA is changing in December. Dropping drastically.
A phone call cleared it up:
I am being reassessed for PIP before December 17th, which Severe Disability Premium relies upon me receiving. So they will be taking it away pre-emptively, because they’re so confident they won’t need to reinstate it when I fail to cling onto the desperately needed PIP points. (It’s not even worth noting that my illness is incurable and progressive, is it?)

And just like that, my brief respite is over. My week has been punctuated with crying fits, temper, feelings of hopelessness. I am so scared that the remaining seven months of this year will go much the same as those sixteen limbo months, full of dread, apprehension, self-loathing and despair. I would have dearly loved a longer period of time without this hanging over me.

One week ago I was starting to prepare for the accessible-home-hunt, as things in my family home (which I was only ever supposed to be in very temporarily) are deteriorating. Now I can’t do it- not if there’s a chance I’ll lose PIP, and the Severe Disablement Premium with it. If that happens I’d have to move out again and back to here and that would take more energy and self-esteem than I could ever afford to give.

ever-decreasing circles

11 Monday Jan 2016

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I told the physio I was crying so much because David Bowie died. It was mostly true but there were definitely tears of frustration in there, the same ones I’ve been sobbing out for years at the lack of help.

When I was diagnosed with Ehlers-Danlos Syndrome in the summer of 2014, the letter my consultant from UCH sent to my GP included several recommendations for referrals to help with management of this condition. Finally, I thought, I would get some help. 18 months later, I feel like I might as well have asked a brick wall.

In that letter I was given a strong recommendation to see a hand and foot specialist. My GP tells me they can’t refer anyone, even diabetics to podiatry. As for hand therapy, my physiotherapist says there is a specialist within the trust I’m having physio under but they only accept referrals from consultants. I no longer have my EDS consultant because cuts to NHS funding mean she can now only diagnose patients then discharge them back to the care of their GP. I’ve asked for a general rheumatology referral and been refused because “why would [I] need it?”. I need it because having a specialist is the only way to get help, apparently, and that should be reason enough. (Other recommended referrals were GI and Autonomic clinic, I’m hoping to get to the Autonomic clinic through my cardiologist who I already had before diagnosis.)

 

Hydrotherapy or massage therapy won’t happen in this trust. How can I get them? “Move”, said my physio, sardonically. I’ve warmed to him slightly. He replaced my lovely bright therapist a few months ago and his vaguely dour approach was quite off-putting. He keeps demanding of me what I WANT from physio and “not to get worse” isn’t a good enough answer. However, he says he has a plan and I’m inclined to trust him. He seems as frustrated at the limitations the NHS has put on treatment of chronic conditions as I am.

It’s exhausting to keep fighting the same battles. It feels like I’m going in ever-decreasing circles, chasing my tail, lost in a maze. I know I’m not the only one in this position because of cuts to health services, and it seems incredible that cuts affecting so many people could have been made.

 

In 2016 I resolve to be resolute.

30 Wednesday Dec 2015

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I don’t generally make New Years Resolutions. Every year I just hope that it will be better than the previous year. After a mostly-hellish 2015 I don’t think that will be hard to manage.

This year, however,  I resolve to be resolute. The most useful thing I’ve learned about EDS from healthcare professionals since being diagnosed 18 months ago is if you want good care you have to fight for it yourself. If you get apathetic, you’ll slip through the net. So, in 2016, I resolve:
1. To insist to my GP that I need a rheumatologist. She has refused to refer me twice on the basis that a) I have already been diagnosed and b) I have a pain specialist and a cardiologist already. But when I go to see a GP whilst in the throes of a fatigue crash, EDS never comes into it and I am invariably sent for a pointless “generic tiredness panel” of bloodwork which all comes back fine, wastes NHS money and resources, and doesn’t teach me one bit how to manage in the future with reduced energy and ability.

2. To get an Autonomic Clinic referral, somehow. This referral was one of the things my July ’14 diagnostic letter promised me, along with a GI specialist and specialist hand and foot assessments. None of them materialised once I was discharged back to the care of my GP. When my autonomic symptoms increased drastically early in 2015 I asked for a referral again. Dizziness, blackouts, nausea, random fevers, lack of controlling one’s body temperature – these things aren’t really fun. Then I asked again in October to be told that my cardiologist should be referring me instead. My next cardiology appointment is in MAY. Time to bite the bullet and call the secretary…

3. To stick with therapy (unless it becomes deleterious to my mental health). The therapy my psychologist has recommended to me is Mentalisation. It’s shown to have better results than CBT for patients with emotional instability. What scares me is that it starts off with 6 months of group therapy. But last year I promised myself I would go to therapy, and this is it. I’ve never completed a full course of therapy in my life, except when I was actually in hospital and had no choice, but last year, when the fog lifted from the worst mental health I’d suffered in some years, I promised myself I would go back to therapy and STICK at it and try to make some progress.

Also probably to blog more. Having poor mental health or too much pain generally means that I’m not up to writing long pieces (or even short pieces). This is why Twitter is my medium of choice for writing, to be honest. I can’t get too distracted in 140 characters.

Working as a disabled person, not as simple as just having a job

17 Wednesday Jun 2015

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Millly's Move

In many ways I was lucky, I become disabled whilst I was already in a job, I was able to negotiate reasonable adjustments and stay in the same role. In the last year I’ve had a few more health issues and staying in work has become more complicated. I now need a new wheelchair and a new home.  It sounds straight forward, go to NHS wheelchair services and get the wheelchair that fits my needs and, as both me and my husband work and we can afford a mortgage, buy a home that better fits my needs. Only it’s so much more complicated that that.

A year ago I was referred to Wheelchair Services by the Occupational Therapist I was seeing at RNOH Stanmore whilst inpatient. 6 months later I had an assessment, and found out they don’t provide wheelchair vouchers for powerchair users. Once we’ve moved to a house…

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Being disabled is a full time job.

15 Friday May 2015

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“Getting support for your disabilities is a full-time job you have to fit around being disabled.”

That is something my friend Richard told me this morning, after I had vented a bit about the near-daily phone call to the DWP I’d just finished with. Having dealt with serious illness himself, he knows how exhausting it can be to keep up with forms, certificates, letters, phone calls.
This has been the last 9 months of my life, ever since I applied for ESA and PIP to help deal with disability. The minute I had my diagnosis in hand last year I applied for help. I was no longer able to work part-time in pubs, as it’s not very useful when you can’t lift things heavier than a full pint, climb stairs, or unscrew beer taps without dislocating a wrist. Eventually even part-time studying was impossible. Right now I would describe myself as a full-time cripple. Every day is a measured exercise in trying not to be in pain, trying not to injure myself. A week where I have no appointments in one hospital or other, or at my long-suffering GP’s is a rarity. And then there’s the DWP.

It’s my second job. I’m moonlighting as a benefits claimant. Every month I pick up my medical certificate for ESA, get it sent internally via the Job Centre, and wait with my heart in my mouth to see if it’s arrived at the DWP HQ in time. Any lateness will result in a sanction, and when there’s only £72 odd to live on per week, it doesn’t leave you with an awful lot of excess to fall back on if this happens. The GP who signs the medical certificate is not always my primary GP, so with no knowledge of me they just pick the first thing off my medical records and the DWP don’t like it when my reason for being unable to work is “hypertension”. I’ll be doing that anxiety week until I’m finally called in for a Fitness To Work assessment, whenever that is. It’s easier to keep us in limbo than process our applications.
Then there’s the ongoing PIP appeal. I’m calling them daily at this point to find out why they haven’t sent the full medical report to me yet so I know what I’m appealing against (apparently you can’t just say “took all medical evidence and chucked it in the bin along with everything I had to say”).

Trying to prove your disability to a body that is determined to deny you access to support is exhausting and time-consuming. PIP is the gatekeeper to so many things. It took me literally months to get a Freedom Pass for transport from my local council because I didn’t have PIP yet (it was 9 months between my application and my assessment for PIP). The fact that many people may be seriously disabled but still not deemed worthy of PIP seems to escape the decision makers. Even when I fell three times in a fortnight on public transport, and reported this in my mobility assessment,  it still took a letter from my GP to change their minds. After each phone call to the DWP I’m tired, flat. It’s mentally taxing, demoralising. I haven’t hung up the phone feeling optimistic in months, not since I first applied for ESA and PIP. I feel like a number, a process, that whoever’s on the end of the line is ticking boxes, filing my request onto a conveyor belt heading straight for a furnace. Staying focussed and not giving up is the hardest part of the job.