Regular readers of this blog and followers of the related @CreativeCrip Twitter account might recall in February of this year I rashly pulled myself out of ESA hell in favour of being self-employed. Being honest – I knew at the time that I still wasn’t ready to make such a move. Atos phoning me at home about another WCA was the catalyst. I literally could not face having to deal with them again and was so desperate that taking myself off the merry-go-round seemed like the only thing that would bring some relief.
It’s been touch-and-go ever since, largely because of the appalling lack of support from my old GPs & CMHT Psych Team. As I’ve said before, being a Native American merely Permanently Resident in the UK is not without problems. Every inquiry and appointment turns into an immigration interview – which is not only unnecessary it is quite inappropriate. One of the things that I constantly struggle with in trying to get help is that the professionals I am meant to be dealing with don’t leave their politics and prejudices at home. It’s much the same dealing with engineers from telephone companies, supermarket delivery drivers and neighbours. Everyone has really strong opinions on immigration, benefits and disability and there is no hesitation in imparting their wisdom to me no matter how malicious and ill-informed.
I’ve had to make even more changes in the aftermath of dropping my ESA claim.
My finances were in such a dire state that I had to borrow money to be able to move house and secure it by paying six months up front. There is no feeling of failure quite like crying to your mother at the ripe old age of 46 and having her cash in some of her pension to bail you out.
Instead of the accessible ground floor flat that cost £650/mo (downgraded from another ground floor flat that was £800/mo) in Cardiff, I am now living in an old split-level miner’s cottage in the Valleys that is nowhere near being disabled-friendly. It only costs £375/mo – great for someone with very low income. Accessible bungalows and ground floor flats come at a premium I simply cannot afford having already exhausted my redundancy on paying the mortgages of other people.
I need to find a new GP and essentially start all over again, hoping that I’ll get the support and referrals I need to manage my complex health needs. I haven’t found the courage to actually get myself out of the house to do this – and October marks three months living here.
When I moved house this past July I hadn’t seen my old GPs in over a year – our relationship was *that* adversarial. I just couldn’t cope with having to deal with them again knowing that, quite frankly, they really didn’t give a shit what happened to me as reflected in their attitude every step of the way.
The meds I need I haven’t had for some time now so of course my mood and manner are more down than slightly down (I’ve never been an “up” person and never will be). Having said that – there is a difference between Clinical Depression and just being in a foul mood. I am at least astute enough to recognise which is which in myself., but of course not having effective treatment for the Clinical Depression doesn’t help. I had been on 200gm of Sertraline a day but hypersomnia won out. The fact is that the Clinical Depression *is* really kicking my tail in every way, shape and form.
It seems that I may be an undiagnosed Aspie (and the results of Simon Baron Cohen’s online test support this along with some others) – but unfortunately before anything could be explored on that basis the old CMHT changed Psychiatrists, which they did every few months it seemed. I also missed a lot of appointments because I could not make them for physical or financial reasons or both. Making appointments three months in advance was never going to work. I also begged the CMHT to allow me to have phone conferences. This was laughed at…why I don’t know.
I have now been on a list to see a spinal surgeon for over two years. Every time I contacted the hospital they were annoyed and told me they would get back to me. Now that I’ve moved house I will have to get a new referral.
I am also overdue for knee surgery and this has severely impacted my mobility. Again I will have to get a new referral thanks to the house move.
I am angry about my situation and who I am because of it all the time… and no matter what I try it just doesn’t subside. As I’ve said before, all I’ve ever asked for is the help and support I need to get back to having a somewhat productive life. I’m not the only one in such a predicament but it astounds me still that politicians from all three major UK parties have strong opinions about disabled people and work, yet they seem to go out of their way to make things as difficult and inhumane as possible for us. Everything from Disability Living Allowance to Access To Work to Working Tax Credits is such a nightmare to navigate and especially for anyone who is completely alone.
Today marks the point of no return for many disabled and ill people. An estimated 40,000 – 100,000 of those in our community who have worked will lose our Contributory Employment Support Allowance (ESA) thanks to the new one year time limit railroaded through Parliament as part of the recent welfare reforms.
Just published my first Twitter-based Storify “After #ATOS Calls: Mental Health Meltdown”.
I’ve decided to carry on doing these as long as the DisabilityUK Community is under threat. Please share your #ukmh#mhuk stories and opinions with me via Twitter for next ones. Use as many Tweets as you need. Continue reading →
Image by Edinburgh Coalition Against Poverty via Flickr
As promised to me in my last ATOSUni Campaign Update, today on Twitter @mgtmccartney has sounded the klaxon calling for nurses who have taken part in Derby University-Atos training to speak to her in confidence.
Margaret McCartneyis the GP who sensationally added to the Atos maelström with her British MedicalJournal feature “Well enough to work”in which she investigated the ethics and fairness of the disability assessment process. #ATOSuni will be part of a planned follow-up and Dr. McCartney can be contacted privately via e-mail at email@example.com.
I was able to raise the issue via email with Baroness Tanni Grey-Thompson around the time of the last discussion of the Welfare Reform Bill. She is keen to bring this up in the Lords, but unfortunately the nature of the process is such that the “ideal” moment to query Lord Freud about this has yet to arrive. In the meantime, Atos continues to add to its already sizeable coffers with more government contracts – now inclusive of digitising NHS records.
The lives of people with disabilities is hard enough with Atos & the WRB; but this programme is just the latest insidious manoeuvring by the coalition government & opposition to *not* help as many people as possible. Staying quiet or low-key makes medical establishment complicit in what’s going on. My own personal concerns aside, Atos is gathering strength in taking over responsibilities and functions best left under the auspices of the NHS: the NHS which is jettisoning much-needed hospitals, doctors and nurses no thanks to David Cameron & Andrew Lansley‘s austerity cuts; the NHS which also now has our Big Society Prime Minister peddling charity-driven measures to “improve NHS Nursing”; the NHS that the coalition government is privatising despite the outcry against “reforms” that weren’t on the agenda during the General Election.
As if the hatemongering rhetoric against disabled people wasn’t enough, anti-NHS muckraking has reached epic proportions in some parts of the media. It surely can’t be a coincidence that the tabloids only now seem to care about disabled patients being “let down” by the system when not otherwise castigating us as scroungers and frauds? As usual the great and the good in the great British public rush to agree with incessant horror stories, failing to understand the implications of the NHS being able turning over 50% of its beds to private care in England. Of course this has the enthusiastic backing of private health insurers and big charities salivating as they pontificate about the necessity of overhauling medical and social care, with the latter being little more than a sequel to the already inadequate “Care in the Community” model.
The good news is that least two prominent Twitteratti in the medical establishment don’t seem to think much of #ATOSUni – a good sign! One is GP and recent Twitter connection @PeteDeveson. Dr. Deveson was kind enough follow my account and share my last #ATOSUni Update post with his colleagues Anne-Marie Cunningham and Mary McCartney. Dr. McCartney isthe GP who sensationally added to the Atos maelström with her British Medical Journal feature “Well enough to work” in which she investigated the ethics and fairness of the disability assessment process.
In addition to the support of Dr. Deveson, Dr. McCartney assured me via Twitter today that she will be looking into the #ATOSUni programme next month. Suffice it to say that as the next Lords sitting of the WRB is 11th January and the Welfare and Employment Conference 2012, featuring Department of Work and Pensions Secretary Iain Duncan Smith, takes place on 26th January, Dr. McCartney’s much-needed investigation will be not a moment too soon.