Another #invisibleillness #Disability Diagnosis: Gilbert’s Syndrome

Gilbert’s Syndrome is another complex invisible illness / disability I was diagnosed with. It is a condition that goes a long way into explaining why many medical treatments and diet changes don’t work for me. Unfortunately no GP wants to document it, including the one who make the discovery.

The problem is that conventional medical wisdom dictates that GS is harmless despite suggested heredity links. However, there are studies that show that those diagnosed with the condition have the many of the same debilitating chronic illnesses in common (ex: IBSFatigue), the risk of recurring bouts of jaundice aside.

Following is a link to a UK-based GS Patients support organisation.

http://www.gilbertssyndrome.org.uk

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Some “Claims” about DisRightsUK – the charity behind #HardestHit (AMENDED)

News on @DisRightsUK from Benefits & Work Email last week (originally tweeted via Twitlonger here, here & here).

The email is now publicly available in the B&W News Archive here.

 

DRUK WORKING FOR CAPITA ON PIP
We can also reveal that leading disability charity Disability Rights UK (DRUK) has signed up as a paid sub-contractor to Capita, to help the company carry out personal independence payment medicals in central England and Wales. There is no information on DRUK’s website about the arrangement with Capita.

The deal with Capita was sealed some time prior to 2nd May 2012, since when DRUK continues to claim it is considering bringing a court case to prevent PIP being introduced. The charity also still leads the Hardest Hit campaign against benefits cuts and heads up the Disability Benefits Consortium.

Capita’s bid document quotes DRUK as saying:

“Disability Rights UK is delighted to endorse Capita’s approach to learning, development and continuous improvement.”

Capita make it clear that they are paying DRUK not just to advise them on accessibility issues and to recruit senior disabled staff, but also to pass on information gained from DRUK members. The bid document explains that:

“. . .we have committed to employing a resource within DRUK dedicated to capturing the views and experiences of claimants and those impacted by PIP. DRUK has over 1,000 member organisations which should allow for broad capture of ongoing claimant experiences.”

You can download the successful Capita bid documents for Wales and Central England here:

http://data.parliament.uk/DepositedPapers/Files/DEP2012-1399/A_Capita_Doc4Part5TenderForm_LOT2.pdf

http://data.parliament.uk/DepositedPapers/Files/DEP2012-1399/Capita_Doc4Part6Annex2_Lot2.pdf

 

DisRightsUK is headed by the odious Liz Sayce, responsible for the Sayce Review “which was commissioned to look at how the £320m protected budget for disability employment could be used more effectively to support thousands more disabled people into work.”

DRUK & their partners are clearly working to a specific #fitforwork ideology given their shafting of Remploy – and this latest action as a so-called ally of disabled people shows just how twisted the Hardest Hit Campaign & Disability Benefits Consortium are also.

 

EDIT:

Disability Rights UK have updated their website to disavow havuing a contract with Capita, stating:

We are shocked that anyone could think Disability Rights UK would get involved in any way in delivering PIP assessments. We oppose the cut which will mean 500,000 disabled people are made ineligible for support. (A private competitor has claimed Disability Rights UK is seeking a role in delivering PIP assessments. This is incorrect).

Our only role is to ensure that disabled people have access to the best possible, independent information and advice on our rights, which we hope to provide for free. We are not sub-contracted by Capita. We advised Capita on how to ensure people got good advice on their rights. We are not capturing disabled people’s views or doing anything relating to Capita’s delivery – we recently turned down an invitation to be part of their reference group.

We did have discussions with Capita – but decided we would not work with any PIP contractors other than in our core role as providing rights based information and advice to disabled people. There is no contract.

 

Interesting that ATOS is lying re DPAC and DRUK claims same re Capita.

Note (1):  the PDFs that Benefits & Work included in their story regarding DisRightsUK & Capita are no longer available via the specified URLs.

Note (2): A couple of the PDFs referred to by Benefits & Work are accessible via Google Cache:

Thank you to @boycottwokfare for the tip. Both files can be saved to Google Docs and downloaded via Google Drive.

See also:

Tender documents for the delivery of Personal Independence Payment (PIP) Assessments [redacted]. 75 docs.

PQ 119481, PQ 119482, PQ 119483, PQ 119484 and PQ 119485

 

Thank you to johnny Void for the tip.

 

ADDENDUM: Changed “Facts” to “Claims” in title in a cynical bid to calm down Poverty Pimp defenders.

 

Related Information:

Meanwhile back at the ranch… CreativeCrip 8 Months #AfterESA

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.

Some people say that I have to “fake it until it’s real” and other similar Mindfulness pearls of wisdom along admonishments to “play the game” – both of which go down like a lead-weighted balloon. Being fake just does not compute. I am who I am and what I am is tired… just so very tired of the never-ending fighting for absolutely everything in every part of my life. And I am acutely aware that for every person who might *get* what I’m saying there will be a number of detractors. That’s fine… I can only ever tell the truth – my truth. It’s the same for all of us.

So here I am carrying on doing everything that I am told to do and hoping against all reasonable hope that things will get better.

 

 

I still don’t want to live this life – the real world 2 months #afterESA

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.

I’m one of them. Continue reading

ATOS Meltdown Continued: Dark Night of the Soul (#DWPPressOffice #workfare #ESA #disabilityUK #ukmh #mhuk #a4e)

 

 

 

Sometimes you just need someone to hold your hand and mentor you through things.

This is one of those times.

Continue reading

Millionaires and the welfare state

New at thecreativecrip.com :

Millionaires and the welfare state http://t.co/K0PB9EDR

Scrounging Statistics and Soundbites No. 3: Millionaires & The Welfare State #WRB #benefits #ukpoli

 

“@: I have just published my blog ‘Benefits and the F word’ herehttp://paullewismoney.blogspot.com/2012/02/benefits-and-f-word.html

My thoughts:

What most people don’t realise is that in order to be “officially” recognised as Disabled you *must* be in receipt of DLA. Without it, it is impossible to get much needed help and support – even something as basic as a blue Badge, utility bill discount or motability car. The various programmes that exist are also run along the same tiers used by the DWP – ie, lower, middle & high rate for both care and mobility. If you don’t get higher rate of mobility or care, youre out of luck. This was my experience after becoming disabled a few years ago and using my savings, post-redundancy to fund my needs. Once that money was gone and I needed help, only then did I begin the arduous process of claiming benefits to try and keep going while I aimed for self-employment.

Were DLA not the determiner for access to services etc, I would say it is a moral issue for wealthy people like this man or David Cameron – and given the difficulties of those without such financial comfort in trying to meet the most basic of needs, the wealthy should bear the costs of their needs as long as they are financially able to do so.

Yet again – the system that is at the heart of the problem even more than any one person’s sense of “entitlement”.

http://tl.gd/foeimf ·

One life to live: the irony of #benefitscamp

 

thecreativecrip.com exists solely to document the problems faced by disabled & otherwise ill people who are routinely denied the opportunity to prove to those that judge us, and ourselves, that we are useful. Shame that in the short time it’s been up the content is split between documenting my health problems and the never-ending nightmare of trying to get much-needed help from the government to become more independent & self-sufficient. I can guarantee you that despite the platitudes on high – none of the Cabinet have the faintest understanding why they are pushing so many of us to not even want to try to live our lives anymore. Quite frankly, its obvious the coalition govt & many in Opposition don’t care.

I have spent the better part of two years floundering, barely keeping my head above water as I begged for help and fought to not be forced into the usual dead-end workfare schemes. It was purely by chance that I caught wind of last weeks #BenefitsCamp event organised by FutureGov, a consultancy and social innovation incubator helping to shape the future of government through social innovation. The event itself was for “anyone up for helping fix/change/improve the benefits system – or even better create entirely new ways of doing things”.

The great irony of #benefitscamp is that the team dominated by people with disabilities and invisible illness won the Ideas pitch session. The supreme irony for me is that in the days leading up to the event I had a suicidal meltdown capped with my “I don’t want to live this life” blog post the day before. It took willpower I didn’t know I had to keep myself alive in the aftermath of the Prime Minister, with the full support of the House of Commons, invoking an archaic privilege and overturning Welfare Reform Bill amendments passed by the House of Lords.

The day of #BenefitsCamp I was trapped in bed watching the event on my mobile via the UStream App until it was time for the event participants to split up into teams and work on the shortlisted ideas. I had 2-3 hours of pain and insomnia-fueled sleep and very nearly called it quits as I struggled to stay conscious. Working together virtually aided by Skype and the #benefitscamp livestream, my team came up with a solution that would allow disabled (and not-yet-disabled) people to get much-needed support when able to work & the desperately needed compassionate helping hand when they can’t – but without the pitfalls of the existing DWP process.

The proposed Universal Credit and other benefit “reforms” being pushed through Parliament are no more than plasters on an already festering wound. End-users have not been given a genuine opportunity like the one provided by FutureGov to offer a compromise that would help us to help ourselves, despite the Coalition government’s claims to the contrary. FutureGov have set the standard for virtual participation and collaboration. My team’s success at #BenefitsCamp shows what disabled people are capable of when we are allowed to work with much-needed adjustments.

Related information from some of my team-mates:

Benefits Camp 2012 – Workgroup 7  (worklifebalance.thecreativecrip.com)

Benefits Camp – Confidence-building (janetdavis.posterous.com)

Not idle, just unsupported (thecreativecrip.com)

FutureGov (http://wearefuturegov.com)

Not idle, just unsupported: my original #disabilityUK #dpulo idea for #benefitscamp

I‘ve had many crises over the past few years which chipped away at my resolve to stay positive and be grateful that things could never get any worse than they were in those moments. Becoming disabled is a challenge I never anticipatedI have followed the discussions of the Welfare Reform Bill in the Commons and now the House of Lords and it has literally driven me to despair. What hope can ordinary people have if a disabled Peer, Baroness Tanni Grey-Thompson, is publicly disrespected and her concerns about the inaccessibility of the chamber summarily dismissed by her esteemed not-yet-disabled colleagues?  Continue reading

#ATOSUni Campaign Update No. 4: Enter Margaret McCartney

 

ATOS PROTEST BANNER
Image by Edinburgh Coalition Against Poverty via Flickr

 

Great news!

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.

M. McCartney Twitter Screenshot
@mgtmccartney, Twitter

Margaret McCartney is the 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. #ATOSuni will be part of a planned follow-up and Dr. McCartney can be contacted privately via e-mail at margaret@margaretmccartney.com.

#ATOSUni has yet to hit mainstream consciousness even with the Machiavellian farce that is the House of Lords Welfare Reform Bill discussions and voting lead by Investment Banker Lord Freud. A testament to just how badly the decks are stacked against people with disabilities and benefits recipients in general are the Welfare and Employment Conference 2012, featuring Department of Work and Pensions Secretary Iain Duncan Smith, which takes place on 26th January and Lord Freud’s “Of Mutual Benefit Launch” Demos event held in March 2011. The latter is all the more odious as it was “a privte, invitation-only roundtable taking place under Chatham House rule in the Wilson Room, Portcullis House, House of Commons”.

I can but hope that Dr. McCartney is able to make inroads where I have not.

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