Rare Disease Day - Ehlers Danlos Syndrome

2/29/2012 10:55:00 am BenefitScroungingScum 13 Comments

Today is Rare Disease Day. Whilst Ehlers Danlos Syndrome is conservatively estimated to affect at least 1 in 5000 people, and 10% of the population are considered to be hypermobile, EDS still remains a 'rare disease'. As someone who was not diagnosed with EDS until the age of 28, having been labelled an attention seeking hypochondriac for those 28 years, raising awareness and increasing diagnosis rates is one of my personal missions.

It's particularly on my mind this week after hearing of the tragic death of 34 year old Lois Owen who was diagnosed with Chronic Fatigue Syndrome/ME. Lois was so exhausted she became unable to eat and died from a chest infection she was too weak to fight off in March 2009. Not having enough energy or muscle strength to chew is a symptom I very much recognise, but with a diagnosis of Ehlers Danlos Syndrome I have enough understanding of my condition and the reasons such symptoms arise to work out various ways of managing such issues. Whilst I went without an accurate diagnosis I had no such ability to learn to cope, because how can anyone possibly cope with symptoms that are all supposed to be in their head as they are deemed to be completely fit and healthy?

For me, one of the most heartbreaking aspects of Lois's story is that on seeing her photograph it is immediately obvious that she has widespread joint hypermobility; her shoulders, elbows and wrists are markedly hyperextending, and she also has the classic morphological features of EDS. Doctors are still taught that EDS is a condition so rare they are unlikely to encounter it and so do not tend to use the basic, quick and incredibly cheap tests to consider whether someone might be hypermobile and if so whether they may have a hypermobility or Ehlers Danlos Syndrome.

My hope for rare disease day is that any doctors, nurses, physiotherapists, or OT's out there reading this might think to use the Beighton Scale as a 2 minute test to see if the patient in front of them labelled with ME, CFS, or the less polite 'heartsink patient' has joint hypermobility. It literally takes just a moment, and an experienced eye can spot hypermobility across a crowded waiting room. It's the person who's fidgeting, who uses their hands to gesticulate rather often during speech, who's an odd combination of graceful and clumsy and who repeatedly tells you that they don't know how the latest injury happened... 'it just did'.

Disability News Round Up By John Pring - Week Ending 24/02/2012

2/28/2012 11:19:00 am BenefitScroungingScum 0 Comments

• The sister of a disabled man who died in what she believes were suspicious circumstances more than four years ago says her family are still waiting for answers about his death from their local council.
• A disabled MP has defended his decision to vote with the coalition government on controversial measures in the welfare reform bill that will see cuts to disabled people’s benefits.
• The government has again succeeded in overturning an amendment to the welfare reform bill that would have protected some disabled people from cuts to their benefits.
• A leading user-led organisation has been criticised for asking the minister for disabled people to help launch new guidance on disability hate crime, while failing to invite the media.
• The decision of the head of the care and health watchdog to announce her resignation has been welcomed by a leading disabled people’s organisation.
• Thousands of disabled people across Scotland could face “destitution” because of the programme to reassess all claimants of incapacity benefit (IB), a new report has warned.
• At least two major disability charities are investigating their involvement in a controversial government programme that has been described by critics as “slave labour”.
• Disabled people could soon be forced to work for their benefits for an unlimited period of time, campaigners fear.
• The European Union must act to halt the “blatant discrimination” that prevents disabled people working, studying or travelling in other countries, according to a major new report by Europe’s leading disabled people’s organisation.   
• The government must do more to ease the anxiety of disabled people over its disability living allowance reforms, according to a committee of MPs.

"Keep Breathing And Definitely Don't Die!"* #nhs #iamspartacus

2/27/2012 01:05:00 pm BenefitScroungingScum 18 Comments

Sometimes the words just won't come. How can I say something I don't want to think about,  hear or accept? Something that black characters on a screen translate into a reality I have to face up to.

This isn't a campaigning blog. Sometimes it is used as such, but primarily this is my blog; as it says in the tagline 'life in a broken bureaucracy with a bendy and borked body' And, like all lives, sometimes that means dealing with things we didn't plan for and would prefer not to accept. For five years I have used this space to talk about my life, to share knowledge, to build relationships with other disabled people, to educate and inform, but mostly for me. Originally it was a safe, anonymous place to work through all sorts of issues with just one key theme - life lived with a disability. Over the past couple of years that has changed, it's no longer even pseudonymous, this is the place you'll end up if googling for my real name. It's in the National Archives, a forever record of a first person account of life with Ehlers Danlos Syndrome in the 21st century. In a hundred years or so, this blog along with many others will be studied as historical record, just like we studied the diaries of writers from previous centuries to gain insight into their lives, how they felt and perceived their day to day experiences. The key difference with these new blogs currently being archived is that historical first person accounts of life lived with a disability are incredibly rare due to the system of apartheid which segregated disabled people into institutions and deemed their lives of fundamentally less value than those not yet disabled. My only hope for the future readers of this new breed of disability bloggers is that they see it in exactly the same way as any other diarist - a life lived.

 I wasn't sure, am still not sure what to say. When I started to type, I thought that this would be a love song to the NHS, warts an' all. But it seems that is still a story for another day. For today it is grief, loss, sorrow, sadness and fear working their way from my fingertips onto the screen. My story. As it happens, as it feels lived in the moment, just like all the other windows into individual worlds blogging provides so well.

Finally, last week I saw the respiratory consultant. I was referred to this consultant, Dr Breathe by my rheumatologist before my larynx threw a toddler style tantrum, collapsed and lay on the pavement wailing (silently!) it's not fair back in October last year. So, it came as quite the surprise to Dr Breathe that I couldn't actually speak. Croaking is so last year dahling. As he astutely commented during the appointment, it does not take a genius to hear that there is something profoundly wrong in my trachea.

There's one major indicator that people who've been sick for a while know to look for in their doctors. It's not anything they say, or even do, more a basic rule of being a sickie. If your doctor looks scared, then it's time to be scared. And Dr Breathe, competent, organised and efficient though he was, was also obviously looking worried. Other key signs to look out for should you ever find yourself in this position is the doctor sending the nurse out to book a theatre slot before they've even really taken a full history and when they won't let you delay said theatre slot. You will occasionally find this accompanied by a side order of dark mutterings about why this hasn't been dealt with before by X, Y or Z speciality whilst the poor, scared doctor takes it on board that actually this is a crock of shit they are going to have to take responsibility for because ain't no-one else stepping up to take it from their hands.

Dr Breathe was really quite impressive. He's the kind of doctor who knows what he knows, and crucially knows what he doesn't know. In this case that means really not alot about EDS so far, but give him a bit of time and I'm sure he'll be up to speed. In some ways it doesn't really matter because though neither of us have said it, Dr Breathe and I both know I have tracheobronchomalacia. Ironically, given my history of not being diagnosed with Ehlers Danlos until I was 28, diagnosis is not the key issue here. It's the what on earth do we do about this which is the challenging part. Oh and the not dying bit. That is also key. Quite alot key akshually and given my general ineptitude with keys it's definitely time to up my game.

Although tracehobroncholomalacia is rare, there are a few standard treatments for it. Of course, they are designed for standard people unfortunate enough to collapse their airways, not unstandard bendy people with tissue as fragile as a wet piece of toilet roll. I've had enough orthopaedic surgery to know what happens to my tissue when its stitched or a metal anchor is used. Nothing stays where it's put, supposedly unbreakable bits of metal end up impersonating modern art, sutures don't dissolve, instead hardening into a metal like substance and all that mess creates more mess than there was in the first place. I'm guessing that will remain the case until someone invents a surgical material that is able to support structures whilst being soft and flexible enough to bend in the gazillion possible permutations a bendy body is capable of. Those titanium memory staples tough enough to tow an aeroplane with? Ripped out of the bone and mutilated by a bendy shoulder in a matter of months merrily tearing up tissue as it went.

That means stenting, mesh patches or resection are all filed under 'seriously bad idea'. As those are really the only treatments for this condition that means it all gets filed under 'oh bollocks' which is usually kept in the adjacent file to the empty suggestions box.

What it all means is that I have to put on my big girl pants and face up to all of this. Denial appears to be using extraordinary rendition to make me go and rummage in my knicker drawer for answers whilst Dr Breathe, is I strongly suspect, rummaging around google scholar for his answers. As there kind of aren't really any I'd better find the big girl pants fast and they'd better be pretty. Being bendy has robbed my of the ability to wear attractive bras or pretty high heeled shoes...it can frankly go fuck itself if it thinks its stealing sexy pants from me!

So, a week today I'm going to have a bronchoscopy so we can see for sure what's happening. It's a flexible scope that goes down your airway, past the larynx, through the trachea and into the bronchi. Dr Breathe assures me that the sedation drugs are good stuff and mean I won't remember a thing, but I have EDS and have heard such assurances before. Quite shortly before there was a burly dentist kneeling on my chest bitching about the lack of general anaesthetic in fact so I am not convinced this will be what I might class as 'good drugs'. But, I'll have my big girl pants so I can tough it out with a possible side order of unpleasant hallucinations.

That's the immediate issue to face. After that will come much harder battles. Do I now have to adjust to a whole new level of disability, what will that mean for my life, will I need more practical support or care, will I even qualify for that kind of social care support whilst cutbacks are occurring everywhere and will I be able to cope emotionally with having to deal with social services? Who knows what the answers are except for the latter which is almost certainly not.

I came home from the hospital on thursday filled with the most overwhelming gratitude for the NHS. Whilst the NHS has it's problems, particularly around chronic conditions, it is not until you are actually the kind of poorly that means you need to use the NHS properly that you are able to see how it does what it does properly. Last week I had a chest x-ray, blood tests, spirometry, consultant time and nurse time. Next week I'll have consultant time, anaesthetist time, a theatre slot, medication and an Intensive Therapy Unit down the corridor should something go wrong and cause me to need it. I'll have any medication I need afterwards, I'll be seen again by Dr Breathe as long as I need it.

The cost of ALL this will be borne by the NHS. I am free to focus on the things I can do to improve my condition and ways to manage my life. I cannot even begin to imagine the terror I would feel if I had to pay for these things in an insurance based system. I started this most recent journey in the NHS funded private sector, who didn't know what to do about it so chose to ignore the problem. Complicated is not financially profitable. It's not great for me either, and it's a bit of a challenge for the NHS, but complicated is where doctors and nurses learn the skills they need to treat routine. I'm incredibly lucky to live in the UK where, despite the sterling efforts of Andrew Lansley to chop it into profitable and 'fuck them' categories, we still have a health care system free at the point of need. I don't need to imagine what it would be like to face having to pay for each element of this kind of care or what decisions I might make to go without care based upon my ability to afford it because I have the NHS. And across the Atlantic I have Rachel, who also has EDS and tracheobronchomalacia. The difference is that despite having good health insurance, being educated and able to navigate the system, Rachel has to worry about paying for every single element of her care.

And, thanks to the NHS I don't. Yet.






* the best advice given to me on this matter!

Disability News Round Up By John Pring - Week Ending 17/02/2012

2/21/2012 09:53:00 am BenefitScroungingScum 2 Comments

• The government has been defeated by peers again on its welfare reform bill, this time over a proposal that was set to punish disabled people in social housing who have spare bedrooms.
• New figures show the Crown Prosecution Service is making good progress in prosecuting disability hate crimes successfully, say disabled activists.
• The disability movement is mourning the loss of one of its “quiet leaders”, Stephen Bradshaw, the first director of the user-led Spinal Injuries Association.
• The only London 2012 venue built solely for the Paralympics has been completed, just as organisers marked 200 days to go until the games begin.
• A ruling by the court of appeal has left disabled air passengers with no protection from discrimination during their flights, the equality watchdog has warned.
• Pilot schemes that will give direct payments to disabled students so they can choose their own support should be a “fantastic” opportunity for them to flourish in mainstream further education, say inclusive education campaigners.
• Campaigners have handed the government a letter signed by hundreds of user-led organisations and disabled activists, in an effort to save the Independent Living Fund.
• Activists have told MEPs that “austerity” measures are undermining disabled people’s right to independent living across Europe.

If The #NHS Won't Buy Kali A New Wheelchair...We Will!

2/19/2012 02:47:00 pm BenefitScroungingScum 9 Comments

Once again my fantastic neighbours have come to the rescue and solved the dilemma of how to fundraise whilst being on means tested benefits by setting up a paypal account themselves. This means the money doesn't have to go through my bank account and avoids any potential issues with the DWP as the wheelchair is then a gift.

So, on March 17th there will be a fundraising gig at Panache in Hoylake which has it's own facebook page here. There's all sorts of background information about why I need an electric wheelchair and why I don't meet the NHS criteria here, here, here and here. The gig is open to anyone who wants to attend and I'm getting quite excited about the idea of being well enough to actually go out for an evening...the last time I can recall being sometime in October last year...

The best 'guesstimate' I could get for the price of a customised wheelchair is approximately £6000. As it's a guesstimate I might be lucky and find it's only £5000 but equally it could potentially be £10,000 - I won't know until the full assessment on the 5th of March. Whilst there are cheaper electric wheelchairs available, £2000 odd isn't a cheap option, so I've decided its better to wait until I can afford a more expensive customised chair which will hopefully last me many years, instead of a cheaper chair I'd need to replace within a couple.

For the record, I hate having to do this - asking other people for money to fund a wheelchair feels like begging. Its humiliating and embarrassing. That's why my community stepping in to organise this is so wonderful, not only does it reduce the practical burden on me, but the emotional too. So, if any of you would like to help contribute, you'll have my thanks and eternal gratitude for being part of a whole group of people helping me to focus on increased independence, not continued dependence.

Big Society Bureaucracy

2/16/2012 02:32:00 pm BenefitScroungingScum 17 Comments

As anyone who follows my blog or twitter already knows...I have the most amazing neighbours ever! There's a pile of crockery sitting on top of my microwave as I type, the different patterns showing just how many people have pitched in to help while I've been so poorly this winter. One lady had already declared her intention to run a 10k later this year and help fundraise towards my wheelchair, and now others are organising a fundraising gig to be held in a local bar on March 17th. Knowing me well, the person setting up the gig even made sure to tell me I didn't have to go if I didn't feel well enough! We're the kind of community that Cameron has tried so hard to define with his 'big society' and failed to do so. Which is perhaps partly because it's micro communities not big societies which work in this way. But I digress into rambling. Again. 

So, we've got the venue, the talent, the organisation, and the gig is good to go. Where we've stalled is the financial practicalities. It's not possible to use sites like justgiving without being linked to a registered charity to receive the money. It's also not possible for me to have the money put directly into my bank account because I'm in receipt of means tested benefits. So, I tried to get in touch with the DWP to see how to do this officially as it is technically possible to receive money for a specific purpose such as this without it being considered income. Technically, as I can't find anyone who actually knows how to do this.

First I tried the DWP Press Office on twitter. They didn't reply. So then I tried the local Jobcentre department who oversee income support. They didn't have a clue, which is understandable as it's far from a routine enquiry. After that I thought to try my Disability Employment Advisor. She didn't know either, but was able to tell me that the Income Support department had tried to contact me to say they didn't know...and made a note on my file which said 'treat as income'. I'm not thinking about the possibility of that note triggering a benefits investigation, particularly as I've already just been through a benefits investigation*. After a more in depth conversation with the DEA we decided the best thing to do would be for me to write to the DWP explaining the fundraising and copy my DEA into the letter because then if there were any problems later on I would know where a record of the letter had been filed.

So theoretically, all I have to do now is set up a paypal account to receive the funds. Except...this is the DWP, I'm on means tested benefits and I'm not confident with that uncertainty. I don't want to accidentally do something wrong then find out later when it's too late that it's classed as benefit fraud. I just want my wheelchair and to be able to enjoy how amazing it is that my community want to help support me in this way.

One suggestion was that the wheelchair appeal itself could be set up as a registered charity. I'm not sure whether such an appeal would satisfy the charitable requirements, but I do know how much work is involved in setting up a charity, and that I don't have the time or energy to do that. Another suggestion has been to find an established charity who are willing to have all the fundraising money donated directly to them and then pay for the wheelchair themselves. I'm not sure whether that would satisfy the charities accountants terribly well either.

So, I'm a bit stuck. I know the wheelchair will cost somewhere in the region of £6000. I have all this incredible support to help me raise that money....and so far nowhere I can send that money to be donated without possibly accidentally committing benefit fraud. This is where hopefully the collective knowledge of t'interwebs comes in... I'm hoping one of my readers might know exactly which form I have to fill in to let the DWP know that this money is for disabled specific stuff and not income, or what the DWP call this so the local jobcentre staff know what to look up on their computers. Or perhaps there's another way that this kind of fundraising can be done...

If anyone wants to come to the gig, I'll make sure details go up soon as available, but for now a preview to whet your appetite.



*which showed, unsurprisingly, that I'm claiming all my benefits genuinely, legitemately and not doing anything wrong.

Something Inside So Strong #wrb

2/14/2012 10:56:00 am BenefitScroungingScum 10 Comments

 

It's an important day for welfare reform, the highly contentious Welfare Reform Bill returns to the House of Lords this afternoon after the government chose to apply financial privilege to the amendments the Peers had so carefully considered. Sue has been trying to explain what this might or might not mean for the Welfare Reform Bill so I wanted to look at what it means for our community.

Whether or not the Welfare Reform Bill continues to be amended, the campaign against it has been a huge success. For the first time in decades there is a tangible and determined disability rights movement emerging in the UK, forging strong links with other disabled peoples' movements around the world. Prior to the 2010 election there were only a handful of disabled bloggers trying to alert the rest of our community to the potential problems we were facing. So unknown and unheard were our voices that in September 2010 the Financial Times confidently declared that cuts to disability benefits would be the "easiest bit of welfare reform to sell", something the Coalition government were undoubtedly banking upon to avoid proper scrutiny of the WRB, based entirely upon ideological principles and an astonishing lack of detail.

Without resources or training, those with the least time and energy to give have been those who've given the most. We have pooled our skills and put aside our differences to emerge as a cohesive movement. Groups such as The Broken of Britain moderately focusing on how to use old and new forms of media as a campaign tool, Black Triangle taking a more feisty approach in dealing with the private sector elements of the welfare process, and Disabled People Against Cuts organising a daring and powerful act of civil disobedience. Having learnt from the successes and mistakes of disability rights icons such as Vic Finkelstein and Jane Campbell we have looked ahead, whilst ensuring we never forget to look over our shoulders and ensure that no group of sick or disabled people are left behind. We have worked closely with Carers, made sure that there is appropriate information available for those with learning difficulties and ensured support networks for those with mental health issues, understanding that our strength lies in our acceptance of our diversity and difference as disabled people, regardless of the reason for that disability.

Whatever happens with the parliamentary process this new disabled peoples' movement will continue. We have had one stunning victory, and that is changing the nature of the debate surrounding welfare from an almost universal assumption of scrounging to a gradual awakening of the potential dangers inherent in labelling one group of humans as less worthy than another. Some of the more heated debates, particularly online have fundamentally misunderstood this point, made so eloquently by people such as Rabbi Debbie Young-Somers and David Cameron's former speech writer Ian Birrell - the warnings of apartheid and potential fascism are not because a government wanted to cut some money from the welfare bill. They are because of the dialogue introduced to the public by the previous New Labour government and ramped up by a Coalition government dominated by inexperienced politicians. A dialogue which, without evidence to support its arguments rebrands the most vulnerable; the poor, the sick, the single parents, the carers, the disabled as being drains on society, unworthy of support and insinuates the idea that these people are somehow to blame for the wider economic challenges we face into the national consciousness. A dialogue so insiduous that less than two years after the Coalition came to power there are deeply disturbing increases in the level and nature of hate crimes against disabled people.

As a campaigner I understood long ago that we would lose the battle of the Welfare Reform Bill, but that did not mean we would lose the wider war. There are many problems with the details in the bill and potentially vastly more expensive benefit traps being created by it as those who drafted it had a remit to cut money quickly, not consider the long term consequences or complexities faced by those dependent upon benefits. However, the real war is to attack the damage which has been done to the identity and rights of sick and disabled people in the past two years, which threatens not just to undo all the progress towards equality made in the previous forty years, but to embed apartheid into the British consciousness.

And for those of us digging in to fight that wider war, there is just this to say to the government.

You may be Goliath, but we are David and working together we can and will be the slingshot and pebble.

Disability News Round Up By John Pring - Week Ending 10/02/2012

2/14/2012 09:49:00 am BenefitScroungingScum 0 Comments

• Coalition MPs who play leading roles in disability-related parliamentary groups – but still voted to slash disabled people’s benefits – have been accused of hypocrisy.
• Disabled peers believe they could still help to secure improvements to the welfare reform bill, despite their anger and frustration with the government over how it has handled the legislation.
• One in five disabled people’s organisations in London faces closure in the next year because of cuts to their funding, according to a new report.
• Work and pensions ministers have been told that their rhetoric on disability benefits is fuelling an atmosphere of hatred and hostility towards disabled people.
• Colourful public murals that show disabled people’s hopes and joys, as well as the continuing barriers they face in their lives, are being unveiled across the country.
• The Supreme Court has been hearing a “landmark” community care case that could have huge implications for disabled people who receive support from their local council.
• The Office of Fair Trading has taken action against a leading stairlift company following a study into “unfair business practices” across the mobility aids market.
• Disabled campaigners have welcomed the decision to reverse some of the cuts to station staff made last year by the body that runs London’s tube network.
• Lawyers and Deaf and disabled people’s organisations have come together to find new ways of using the legal system to defend disabled people’s rights, inclusion and quality of life against public sector cuts.
• The government must take action to close the widening gap between the care and support needs of disabled and older people, and the funds available to meet those needs, according to an influential committee of MPs.

For links to the full stories, please visit Disability News Service

Disability News Round Up By John Pring - Week Ending 3/02/2012

2/07/2012 11:08:00 am BenefitScroungingScum 1 Comments

• A disabled senior government adviser has admitted failing to tell civil servants about freelance work she carried out for an insurance giant that is set to make millions from the coalition’s incapacity benefit reforms.
• The disability movement looks set for a legal showdown with the government, after the coalition prepared to force its highly controversial welfare reform bill into law.
• The government has sparked fury among disabled people’s organisations and activists after taking advantage of a rarely-used parliamentary procedure to force through some of the most unpopular parts of its welfare reform bill.
• The company paid £100 million a year to test disabled people’s “fitness for work” has refused to continue cooperating with an “effective” new way of improving how decisions are reached, MPs have heard.
• An MP has called for new laws to protect the dignity of disabled people forced to undergo intrusive security checks at airports.
• A revolutionary new table could save the lives of wheelchair-users involved in train crashes.
• The rail industry still has more to do to improve access, despite increasing numbers of disabled people using railcards, according to a leading expert.
• Disabled activists who took part in a major protest over the welfare reform bill have warned the government they are planning further high-profile direct action.
• Disabled activists have explained why they took part in a major direct action protest that brought large parts of London’s West End to a standstill at the weekend.
• A leading MP has criticised the General Medical Council after a GP whose negligence allowed disabled people to be raped and neglected at two residential homes removed himself from the doctors’ register.