Wednesday, June 30, 2010

Elderly Carers: How will the state cope when they are gone?


"I can look after him if I live longer than he does. I will know he is all right," she says. "I think a lot about afterwards, what's going to happen, if that isn't the case. I hope he can stay here if somebody comes in to look after him." Urmila Patel.

 The Samuel's of this country and their elderly carer's are amongst the most vulnerable in our society. With the radical cuts David Cameron, George Osbourne and Iain Duncan Smith are making to the benefits system supporting disabled people and their carers, BSS wants to know what will happen to all our Samuel's as their parents become too infirm to care for them? 

Reposted from 26/02/2009 

Dear Samuel, 

Reading about Ivan has reminded me of how lucky I was to meet you. It's been five years now and I know your Mum still misses you every moment of every day. I wasn't privileged enough to meet you until near the end of your life. A life which touched any it came into contact with, lighting them with love and deepening with understanding.

You were a beautiful, healthy baby boy, born with no sign of the incredible life you'd come to lead. When you were six weeks old you fell ill. What initially appeared to be the kind of childhood illness my generation has forgotten ever existed, rapidly became showed itself to be more serious. There was deep snow that year, and despite increasingly frantic phone calls from your mother the doctor refused to come out to you, instead he chastised her for being an over anxious new mum. Even now, when she's having a bad day your Mum blames herself for not having dug through the drifted snow to get to the car and take you to hospital herself. You were seizing by then though, and vomiting so violently and constantly she fought for hours to keep you upright and breathing. Just you, her and your three year old brother.

Eventually when your grandmother phoned the doctors they agreed to send someone out. By then you were so very ill the roads were closed and a police escort provided to take you to a specialist children's hospital. There they battled and saved your life but hours without sufficient oxygen permanently damaged your brain. No-one complained back then so the doctor who'd refused to see you was quietly sent away and nothing more ever said.

After that life was irrevocably changed. Benefits and care packages were almost unheard of back then, so your Mum and Dad just got on with it. Even when both your grandparents fell ill and your Mum had to nurse them. Even when your Dad got cancer. Even when your Mum found she had cancer too. At the same time as your Dad. They just got through it. They'd learned from an expert.

When I met you you were already dying. In terrible pain you endured thousands of medical procedures throughout your life. No matter how painful the procedure you had to go through, without fail you would tell the doctors and nurses you were sorry. And ask for a kiss to make it better. You always got your kisses.

You changed the world Sam. Your Mum was so appalled by the way the medical profession treated people with intellectual disabilities that she somehow found the energy to force through changes. You were far too busy making people laugh to worry about that though, you had a chortle so infectious it would catch people outdoors and complete strangers would find themselves joining in. Many a Christmas dinner was had with an extra place laid for Mr Blobby, you so loved big, bright inflatable toys. There was even a blow up alien on your coffin. The chapel was too small for everyone to get inside so people spilled out the doors, filling the air with laughter as we all sang 'Always look on the bright side of life'

You did exactly that. You'd be nearly 50 now and none of us who met you will ever forget that no matter what you had to put up with kisses always made it better.





Tuesday, June 29, 2010

Who's Cheating Who?

BBC Scotland investigates the new system of Employment and Support Allowance brought in by the previous, New Labour government. Starring a previously principled Danny Alexander MP explaining his concerns about vulnerable people being disallowed the benefits they should be entitled to.






Oppose the ConDem cuts to DLA!

 Please join this newly created facebook group to show your opposition to the ConDem government's attacks on Disability Living Allowance

"We, the undersigned, oppose the coalition government's attack on Disability Living Allowance (DLA).

We object to the announcement that the entire DLA caseload will be reviewed via new medical tests in 2013, leading some members of the public to believe that stringent assessment measures are not already in place. How, exactly, will reviewing every existing claim help save taxpayers' money?

We object to the coalition making misleading, spiteful references to DLA, including wrongly describing it as an out-of-work benefit in the State of the Nation report, which complains about the "persistence" of disabled people who, um, are still disabled a few years later.

We object to the vicious, savage attacks being meted out on disabled people via the tabloid press, egged on by the new government.

And we object to George Osborne's objective of reducing the number of claimants by 20% despite the fact that the DLA fraud rate is 0.5% - lower than for any other benefit. You're the chancellor, George, you can count... can't you?"

Stop Press! George Osbourne to put coma patients to work as draft excluders!

Chancellor George Osbourne has outlined plans to cut incapacity benefit, insisting those capable of working should work, citing the example of coma patients who could easily take up gainful employment as draft excluders 

Monday, June 28, 2010

Dis a Disabled

It's a good job I've spent the past 5 days in Oxycontin withdrawal as it's kept me too busy rocking in a ball whimpering pathetically to focus much on the new ConDem government policy of 'dis a disabled'. Bit like 'hug a hoody' only more likely to end in borrowing the money for a one way trip to Dignitas. Actually, maybe we cripples need to take heed of the media and form that all powerful disability lobby they keep banging on about, we could have assistance dogs instead of pit bulls and use sugru to make accessible knife waving technology. Having seen the poor success rate of the deaf mugger I've rejected street crime as an option, but I'm not ruling out becoming a master criminal if I get kicked off benefits. I'm not sure which is more attractive, prostitution or drug dealing? There's enough of us to form a decent cartel, though we might find hiding amongst the local population a tad difficult as so few places have accessible toilets.

After dithering about the best way to carry on with withdrawing I decided to go for the tried and tested 'fuck it' approach and simply didn't bother taking another Oxycontin. That means, I've been Oxycontin free for um, 108 hours and counting. Thursday was grim, so much so I've forgotten all of it, which is probably for the best. Friday I dragged myself to physio to be greeted by the lovely J exclaiming 'oh my god, what's happened' which seemed a fair enough statement under the circumstances. I wasn't sure I should even attempt to go, but I'm very glad I did as J worked some magical physiotherapy wizardry on my back and shoulders, without which I doubt I'd have made it through the day. Thank goodness for DLA covering these additional expenses as without that treatment I may well have ended up in A&E and had to be admitted to hospital over the weekend, which would be vastly more expensive than the £47.80 a week paid to me in the form of Middle Rate Care component*. Saturday was a bit easier and I was able to let the sun burn into my back and carry on the good work started by J, then yesterday passed by in a blur of not actually being able to focus or settle on anything. 


Stupid jokes aside, coming off Oxycontin has been pretty much the most challenging, arduous and painful thing I've ever had to do, and I'm only having to deal with the physiological aspects of dependance. Giving up smoking was a luxury holiday in comparison to coming off Oxycodone. Opiate withdrawal messes with your emotions, your sex drive, your physical condition and that's not even touching upon the Trainspotting style incidents of vomiting so much you long to fall down the toilet into oblivion, or hallucinated babies crawling across the ceiling. I'm proud to report I didn't hallucinate any babies but there were a fair few other moments even the worst acid trip couldn't acheive. I can't imagine how it's possible to successfully come off opiate drugs with a mental addictive component in addition to the physical symptoms but I can say that until we have a radical rethink of how we deal with addiction in Western society the problem will only get worse. The only thing that seems to help is to be in control of one's own rate of withdrawal, which is perhaps why the pilot studies looking at withdrawal success when addicts are initially given unlimited access to heroin have been so successful. 

It's off to Leeds later today for the MRI of my hips, pelvis and spine. Fortunately GangstaGuy is able to drive me, otherwise I'd probably have had to cancel the appointment. It will be good to finally find out what the congenital deformities in my hips and pelvis might be, but after a worrying email over the weekend from another bendy patient advising me that Professor Bird's retirement has been brought forward to July**, I'm just hoping there will still be someone with the relevant expertise to read it.  Oh, and that I can keep still long enough to actually have the scan!




*For anyone who's interested, one 30 minute physiotherapy session costs me £30. This particular kind of physiotherapy is not available on the NHS. 
** I don't have any details to confirm or deny this other than an email informing me Professor Bird's secretary has had to phone people to tell them they will no longer be seen as his retirement has been brought forward.

Thursday, June 24, 2010

Inanimation

Having carefully considered the advice of both TopDog GP and Dr Pain to remain on a twice daily 'holding dose' of 10mgs of Oxycontin and rejected it as recklessly sensible, withdrawal continues. I last had any Oxycontin at 9pm yesterday, so far today has proved challenging. 

There's the weird prickly feelings in the soles of my hands and feet, the stabby all over little white hot needles reaching up through my skin and my all time worst enemy, withdrawal induced pain in the fascia across my back and shoulders which is so intense I've spent lots of time fantasising about the ability to stick a knitting needle into it and stab madly. It's probably for the best that I'm too unco-ordinated to even consider anything with needles-when I was at school I managed to sew whatever rag I was in the process of destroying not just to my skirt, but all the way through and into my leg. 

Fortunately there hasn't been any puking or even pooping, so far. I'm confidently predicting I'll take that statement back at approximately 6am tomorrow. There has been a fair bit of irrational anger, mostly prompted by my inability to work itunes. I was cross enough to punch the laptop, which then made me more cross because I couldn't. Perhaps that's why I walked face first into the door. Again. Then opened another one into my face for good measure. It's obviously a conspiracy of inanimate objects to teach me not to fume impotently at them...the sat nav leapt off the windscreen and hit me in the face at the weekend.

Finding builders to do the adaptations needed to bring my mobility scooter home has proved tricky so far. It turned out my landlord was too booked up to arrange the work himself, his wife had volunteered him without consulting him. Which is why my mobility scooter is still in the store room of the charity shop. I have spent much time despairing of the lack of decent Polish builders in this part of the world only for fate to smile upon me and send a whole host of semi clad, muscle bound English builders to work a few houses away. I've long held the opinion that stealing other people's builders is the way to go. Be nice and co-operative and suddenly they're your builders. Admittedly the boobs are probably as much help as the being nice, but let's not split hairs. The work that needs doing is annoyingly complex due to a sloping road and raised ground height so the job is beyond even the combined forces of GangstaGuy, Ben or Roland. Every builder I've managed to get an opinion from so far has scratched their heads and mumbled alot before being too busy or too expensive not to get another opinion. So I'm crossing my fingers that in addition to trying to chat me up, the nice builder man in charge of the semi clad muscley ones is serious about the work. His comments about the the government and local authority all being a shower of shites pissing in the same pot mean I'm cautiously optimistic.


As I am about the Oxycontin, the end of this awful process is in sight. I should be taking another 10mg dose at 9pm tonight, having skipped this morning's tablet. I'm not sure if I'm now so far along that I'm in the last stages of withdrawal or if Oxycontin stays in your system so long that my levels will drop sharply if I skip the next dose as well and just carry on. What I am sure about is feeling distinctly odd. I guess I'll find out about the next dose soon enough!

Wednesday, June 23, 2010

DLA: Clearing Up Confusion

As there seems to be widespread confusion about yesterday's budget changes to disability benefits it is worth restating certain facts before giving further opinion. 

The Chancellor, George Osbourne is proposing changes to Disability Living Allowance (DLA). He intends to introduce a medical for all claimants, including existing claimants from 2013. Osbourne has predicted this change to DLA will save the government £1.4 billion by 2015.  The agenda is clear; to save money. 

DLA is a NON means tested benefit and this will not be affected by the proposed changes. DLA is a basic recognition that to be disabled means to bear extra, unavoidable costs. DLA is in two parts, a care component and a mobility component. DLA is not an out of work benefit, had they wanted to the Cameron's would have been entitled to claim DLA for their profoundly disabled son Ivan. Many of those in receipt of DLA work in either full or part time roles, which they would not be able to do so without the extra financial support DLA provides. The costs of disability don't go away because someone is able to enter the workplace, if anything the costs associated with disability often rise when someone is working as they have less time and energy to deal with daily living tasks than they did when they were not working. For an explanation of why we have DLA and why it would be an expensive mistake to alter entitlement, see this blog.

The Department of Work and Pensions own statistics* cite the overall fraud rate for Disability Living Allowance as being less than 0.5%, compared to the 0.8% of offical error the DWP themselves admit to making. So, according to the official figures, less than 0.5% of those claiming DLA are considered to be fraudulent. Compare that to the much higher rates of fraudulent claims in Income Support of 2.9%, Incapacity Benefit at 1%, or Jobseekers Allowance at 2.8%**. The only benefit which has an overall fraud rate of 0% is the state retirement pension.


George Osbourne proposes to save £1.4billion within the next 5 years by introducing medicals for a benefit with the lowest fraud rate of any. It's difficult to see where those savings can be made other than by making the already rigorous criteria for claiming DLA even more onerous, particularly as the previous government estimated that an additional 1.7 million people would require care and support by 2026. Even using that as a very rough estimate it seems fair to suggest that some 400, 000+ people will require the kind of support provided by DLA over the next 5 years, making it even more difficult to see where that £1.4 billion could be saved.


There is a great deal of understandable public anger about workshy people claiming multiple sickness benefits to avoid work and live a supposedly cushy life of tax payer funded ease. Against this background many have welcomed reforms to DLA, assuming that it will do a great deal to address such problems. It cannot be stated often enough that reforming DLA to include medicals will do NOTHING to alter this problem as DLA is a non means tested benefit claimed by disabled people to help with the additional costs of disability. If anything, making it more difficult to claim DLA will force some disabled people out of the workplace and onto out of work benefits such as Income Support or Employment and Support Allowance (the benefit which is replacing Incapacity Benefit) 






*Table 2.1, page 8 of the report. 
**Please note, figures quoted are for fraud alone, not fraud & error which is a considerably higher percentage as it includes genuine mistakes made by claimants and mistakes made by the DWP themselves.

Tuesday, June 22, 2010

Budget News, Initial Thoughts About DLA

Disability Living Allowance will not be reduced. All claimants will be given medical assesments from 2013.

Initial thoughts: Introducing medical assesments for DLA initially seems sensible. But it is based on a flawed assumption that there are many people claiming DLA who either do not need it or who are abusing the system. 

 If medicals are carried out by well trained, experienced medical professionals who understand and crucially are allowed to take into account the affects of fluctuating conditions this may be sensible. However, it will be a costly mistake to reassess many lifetime award claimants who have conditions which will never improve and likely to continue to degenerate.


However, should medicals be carried out in a similar manner to those for Employment and Support Allowance by companies like ATOS origin any potential savings will be drowned out by the vast cost of appeals. That does not take into account the huge personal cost to traumatised claimants, who will be the most vulnerable as those few fraudulent DLA claimants simply do not care & will find another way to abuse the system. 


My suspicion is that these proposed changes to DLA are coming from an idealogical rather than practical position and in the long term will actually be more costly on both financial and personal levels rather than introducing any economic savings. 

Updated, 1558: There is a more detailed look at the changes to DLA in today's budget over at Arbitrary Constant

Updated; 18.44 One claimant details her experiences of 'medical assesment

Updated; 19.40 Thoughts on today's budget announcements about DLA from a mental health claimaint 

Updated 23.06.2010 DLA:Clearing up Confusion  

Friday, June 18, 2010

See Me!

See Me

What do you see, nurses, what do you see?
Are you thinking, when you look at me-
A crabby old woman, not very wise, 
Uncertain of habit, with far-away eyes, 
Who dribbles her food and makes no reply, 
When you say in a loud voice - "I do wish you'd try"

Who seems not to notice the things that you do, 
And forever is losing a stocking or shoe, 
Who unresisting or not, lets you do as you will, 
With bathing and feeding, the long day to fill.

Is that what you're thinking, is that what you see?
Then open your eyes, nurse, you're looking at ME...
I'll tell you who I am, as I sit here so still;
As I rise at your bidding, as I eat at your will.


I'm a small child of ten with a father and mother, 
Brothers and sisters who love one another, 
A young girl of sixteen with wings on her feet.
Dreaming that soon now a lover she'll meet;
A bride soon at twenty - my heart gives a leap, 
Remembering the vows that I promised to keep;
At twenty-five now I have young of my own,
Who need me to build a secure, happy home;
A woman of thirty, my young now grow fast,
Bound to each other with ties that should last;
At forty, my young sons have grown and are gone,
But my man's beside me to see I don't mourn, 
At fifty once more babies play 'round my knee,
Again we know children, my loved one and me.


Dark days are upon me, my husband is dead,
I look at the future, I shudder with dread, 
For my young are all rearing young of their own, 
And I think of the years and the love that I've known;
I'm an old woman now and nature is cruel
'Tis her jest to make old age look like a fool.


The body is crumbled, grave and vigor depart, 
There is now a stone where once I had a heart,
But inside this old carcass a young girl still dwells, 
And now and again my battered heart still swells.


I remember the joys, I remember the pain, 
And I'm loving and living life over again, 
I think of the years, all too few - gone too fast, 
And accept the stark fact that nothing can last
So I open your eyes, nurses, open and see, 
Not a crabby old woman, look closer, nurses - see ME! 


This poem was found amongst the possessions of an elderly lady who died in a geriatric hospital ward. No information is known about who she was, or how she died. We could all see a little more when we look at people. Thank you @WirralMums for reminding me of this poem. 

It's a message to remember; after all, one day we'll all be like Chuck or Aunty Betsy

Deaf Mugger!

Wednesday, June 16, 2010

A stitch in time can sometimes cost you nine

On Sunday, over lunch, the subject of Disability Living Allowance came up. I know, I know. I need to get out more. But see what happens when I do? In depth discussions about welfare reform. In a Harvester of all places. Which, by the way, did have a disabled toilet. It's just that it was locked so I couldn't take any photos for you. I was all out of 'traipsing around the pub to find a member of staff, to follow to another member of staff, to scratch both their heads about where the key might be' spoons. Must've been the welfare reform debate exhausting me. 

It was lunch with an old friend from university. We both studied law and did reasonably well at mooting back in the day. It obviously made more of an impression on him than it did me as he now teaches law. Mind you, he wasn't the one who got touched up by a senior member of the judiciary. The thing about debating with legal-y types is that you better damn well know your stuff. Otherwise so many holes will be poked in your argument it'll sink without a trace before the starters arrive. 


My friend was curious about Disability Living Allowance. 'Why', he asked, 'in a time of such financial crisis are we paying people just because they are disabled?' 'Surely there's no need for that payment when we have an NHS to provide medical care and local authorities to provide social care?' 


Why indeed? 


Disability Living Allowance is one of the most misunderstood and yet most practical and vital benefits we have in the welfare state. It is NON means tested, so it can be claimed by anyone who meets the required standards for needing assistance with either a care component or a mobility component. 

My legal chum was curious, 'why would we pay rich people this benefit?'* The answer is that we probably don't, in all but a few, rare, cases. Disability is disability, regardless of income level. Whatever one does or doesn't earn, the additional costs arising from disability remain. Had the Cameron's wanted to detail their son's disabilities in the explicit and minute form demanded by the Department of Work and Pensions, Ivan Cameron would have been fully entitled to the highest levels of Disability Living Allowance, his parent's financial wealth has nothing to do with the level of disability he had*. That, and the costs arising from it would be the same whether his parents were on means tested benefits or multi millionaires. In fact, the costs of disability often rise once people are in employment as they require additional care and support to remain in work. 'What if I'm really greedy?' my friend asked 'and I have millions but still want to claim DLA?' I explained that if you meet the qualifying criteria you'd be entitled to DLA regardless of your income, but that if you already have plenty of money you'd be unlikely to want to fill out a form as thick as a novel, giving explicit details about every aspect of your life. How you pee and poop being no exception. 

DLA is one, if not the most difficult benefit to claim as the qualifying criteria are so very strict. For example, to claim the higher rate care component a person must require help for at least an hour during the night, whether that hour is split up into separate periods of help or not. At least an hour a night, for at least 4, probably 5 nights every week. My frequent nightly jaunts to the toilet, dislocating as I go, which often mean falling over, or stumbling face first into a door frame at 4am were not considered enough to qualify for higher rate care. Nor was my airway collapsing sufficient reason for the DWP to think I required someone to watch over me at night.

That all made alot of sense to my friend, so we moved on, as the overall concept of the state paying people money because they are disabled still didn't quite make sense to him on a financial basis. 

To answer that question I had to explain to my friend how the social and health care system in England works. There is an assumption by the wider public that disabled people receive all the support and services they need. That disabled people are provided with a nice little bungalow to live in, paid for by the state, given all the equipment they need by the NHS and endless streams of carer's provided by the local authorities. Occasionally this does actually happen, and not just on the pages of the Daily Mail, but for most disabled people life is a constant battle to receive any support, let alone the Holy Grail of support packages tailored to their needs. 

Local authorities do provide some care, and without a full understanding of the system it's enticing to think that Disability Living Allowance is paying for that care twice. It's only once you fully understand the system that you realise, not only is DLA not paying for that care and support twice over, but in all likelihood it is saving the system a fortune in a similar fashion to the pittance paid in Carer's Allowance. 

The care that local authorities provide is rationed. Again, that sounds good. Until you realise that rationing isn't designed to prevent lazy people exploiting the system. Most local authorities only provide care to those who's needs they define as being 'critical or substantial', and demand payment from the care component of DLA towards the funding. To give an overview of what those categories might mean, my needs are classified by the local authority as moderate, which means I am not eligible for any support. 

So, as someone who can't even sneeze without dislocating a rib I don't receive any support from the local authority, the justification being that I can manage. And, to an extent I can. But I only manage because I receive DLA. The care component of DLA allows me to purchase support, and the mobility component to fund transport costs in whatever way I see fit. I use my DLA for things as diverse as paying someone to provide care, through to the additional heating I need to keep warm, pretty much year round, ready prepared food, physiotherapy or grocery shopping on the internet. At the moment I'm using my DLA to fund the cost of a mobility scooter and the costs of the adaptations needed to allow me to have that mobility scooter at home. Without DLA I would immediately lose my ability to cope by paying for these extras and have no choice but to throw myself on the mercies of the local authority. As would every other disabled person, and as most of us fall into the 'considered to be coping' category that would be an awfully high proportion of disabled people suddenly having to be admitted to hospitals until the local authorities could figure out some way of either providing the support they require or passing off the responsibility to the NHS. The NHS is already vastly overstretched and an influx of the million or so disabled adults suddenly unable to continue coping because their DLA had been removed would cause it to grind to a halt instantly. 


My friend is an extremely astute, self made business man**, who immediately saw the potential consequences and crucially the potential financial impact of removing what could initially appear to be a surplus benefit. His final comment was to ask how people who don't have the benefit of higher education to enable them to understand the complexities of the system cope? 


The deeply distasteful answer is simply; they don't.




*The Camerons did receive non means tested benefits in the form of Direct Payments towards Ivan's care package. This is because, unlike in adult social care, children's care packages are not means tested. David Cameron referred to this support in his 1st speech as PM 
**And highest rate tax payer.

Tuesday, June 15, 2010

Cherylee Houston interview on This Morning

The Cherylee Houston interview which was aired on ITV's This Morning show last week is now available to view with sound as well as pictures. Thanks to This Morning for fixing the sound! 

If you've ever wondered what I mean by a characteristic bendy movement, just watch Cherylee's body language and you'll be able to see.  Cherylee talks about having Hypermobility Ehlers Danlos Syndrome and fibromyalgia as well as what might be happening with her Coronation Street character, Izzy.

 

Monday, June 14, 2010

Molehills

It's that time of year, when all the referrals from the hospital appointment season come through, spreading like a contagious multi-coloured Outlook rash. This morning was dermatology. 

For someone with EDS I have remarkably good skin so I've never needed to see a dermatologist before. I still don't really, except I've got this little 'might be a skin tag, might be a mole' on my back which has been getting bigger for years. It's still teeny tiny in the grand scheme of things though. If it was just an inch to either side I wouldn't need to do anything about it, but it's right on my spine. The way I get up from chairs means it occasionally gets caught, but it gets squished every time I do the kind of spinal curling required to put wayward parts back in their rightful places and it makes me feel sick. I'm aware there is a certain irony in it being the teeny tiny little mole that makes me sick rather than the loudly popping, painful joint relocations, but whatever. It's my mole to be nauseous for. 

For a while anyway. The mole is to be removed. It's the kind of job which my  GP could do, but because of the potential to bleed lots, and issues with local anaesthesia not working it is wiser to do it in a hospital setting. In, off, out. Simples. 

But it never is with EDS. Issues with the local anaesthetic lignocaine not working properly are so commonly seen in EDS that it's something experienced clinicians ask about when diagnosing people. It seems to vary a little; for some people they can be properly numbed with lignocaine it just takes more than usual to do so and doesn't last as long, others find it 'travels' and they'll get numb...but not in the part of the body the injection was intended for, and others just don't respond at all. I'm in the latter category, it was really shocking to me when I was told that local anaesthetics actually make most people fully numb as I'd always assumed they were just the world's worst painkillers. Having four impacted wisdom teeth removed with only a failed local anaesthetic will be forever etched upon my memory, along with everything said by the dentist who seemed most disconcerted by having to hold down a screaming, fighting patient insisting they could feel everything. Sadly that wasn't the only occasion I was held down, screaming in pain, as a procedure was done, whilst medical staff told me to calm down as I couldn't possibly feel a thing, they'd used lots of local anaesthetic.

The dermatology consultant is lovely and charming, and fortunately quite happy to admit he knows very little about Ehlers Danlos Syndrome. It might seem like a bad thing for a consultant not to know anything about the underlying condition a patient has, but it's probably quite common, there are far too many different rare conditions for doctors to know more than the odd fact about them all. The only time I find it a problem is when doctors very clearly don't know anything at all about EDS...but they won't admit that, and insist upon making fools of themselves by getting fact after fact wrong. That only ever goes very badly for both patient and doctor. As it's unrealistic to expect expertise in every condition, I stick to the rule that any doctor confident enough to admit they don't know everything is a doctor I'm happy to let treat me. I like the ones who use google during appointments to see if they can find any relevant research even more. 

Google had a few things to say about the inefficacy of local anaesthesia in people with Ehlers Danlos Syndrome but had no opinion on what anaesthetic should be tried instead of lignocaine. I explained to the doctor that given the problems with lignocaine I've had in the past I would prefer them just to remove the mole without any anaesthetic. Usually they laser the mole off, then cauterise any bleeding, which apparently hurts. I have a suspicion it's also a disaster of an idea as it's usually very difficult to close wounds in anyone with EDS, the skin just sort of pulls apart and the wound gets wider. I think actually cutting out the mole then stitching will be the only way to get it to heal properly. As it'll only take a tiny incision and couple of sutures at most I'm not really bothered that there won't be any anaesthetic. 

The doctor does seem bothered, in fact almost stressed by the idea and insisted on prescription for EMLA cream. EMLA hasn't worked on any EDS'er I've ever come across, which makes sense as it's a combination of lignocaine and prilocaine, but it does no harm to give it a go. Just not on the morning of the procedure, I'll need to be quite focused mentally to get through the pain without anaesthetic and messing about with people insisting EMLA should work will make that impossible. I'll conduct my own EMLA and pin trial over the next few weeks. 

Professor Bird will know if there are any local anaesthetics more suited to people with EDS than lignocaine so the consultant has asked me to contact Leeds and let his secretary know the answer. That expertise of that nature will be impossible for patients and doctors to easily access once Professor Bird retires in September is perhaps the biggest tragedy of Chapel Allerton's continued failure to appoint a consultant with a special interest in EDS to replace him. 
 

Saturday, June 12, 2010

'I don't suffer!' - Guest blog by Elena Newley

 Guest blog by Elena Newley: Originally posted on Planet Mouret 
 
I don't suffer!

OK, haven't updated for ages now as I've been busy with various projects but today I'm having a little bit of a grump and so thought I'd share my grumpiness with y'all!

I don't 'suffer' from autism - ok??  I HAVE autism.   Argh!  It's not an illness, it's a condition.   I'm one of those people who believes I am blessed with autism.  I honestly feel it's a great benefit to me and I wouldn't want to be any other way.

Not long ago I happened to be at a hospital appointment and the doctor came into the room and his first words were "did you know they can cure autism nowadays?"   Quite apart from being somewhat stunned by this astonishing revelation, I was also thinking to myself "this appointment isn't going to go well!"  I patiently explained that autism is a neurological condition and it cannot be 'cured' to which he replied "oh yes it can, with cognitive therapy if they catch it early enough, say before a child was 5 years old".

Hmm, then I'm thinking to myself "do I really have long enough to talk him through this?" before I plunged into my reply where I pointed out (a) that you cannot properly DIAGNOSE autism before a child is five years old as their cognitive processes haven't developed sufficiently until that point to conduct the actual testing (b) although cognitive therapy may indeed assist an autistic individual with coping with various aspects of their day to day life, it certainly cannot 'cure' autism.    He then hmmed and hahed, remained unconvinced, I gave up trying to explain and we got on with my appointment!

I guess the point here is twofold :

Firstly, his ignorance was alarming.

But secondly, and more importantly from my point of view, I DON'T WANT TO BE CURED!!  I'm fine as a I am! I am happy being autistic and I don't want anyone to 'mend' me, 'change' me, or 'cure' me.

So, lest anyone is left in any doubt - I am NOT suffering!  I am autistic and I am happy this way.  Yes, it's sometimes hard but show me someone, anyone who doesn't find some aspects of their life 'hard' - we all do in our own ways.  Yes, there are times when I wish the Neuro-typical world would get over itself and start realizing that it is THEY who make our lives so difficult by their constant refusal to adapt themselves to OUR needs.  The real joke is, it is AUTISTIC people who are meant to be inflexible and unable to adapt...

Friends, in my experience, it is actually the neuro-typical world which seems unable to adapt.  NT's just automatically assume we all want to fit into their world in much the same way as many people assume the ONLY decent method of communication is verbalization, if you don't talk then (obviously) you can't communicate - ARGHH!  Wrong!

So my dear blog-readers, yes, I am having a little bit of a grump, did I mention that?  :)

Thursday, June 10, 2010

Did they get you to trade your heroes for ghosts?

Amongst the dark vastness of the many millions of blogs, occasionally one shines through like the famous crazy diamonds. Words so powerful, the shafts of light they portray into worlds we'd never otherwise see. 

Cold Steel Rain is one such blog. As long term BSS readers will know, due to my relationship with The Captain I have a particular concern for serving and former members of our armed forces. I wept impotently watching a strong, powerful man retreat into a world of terror so powerful he had no idea where he was. A world where pain was so overwhelming that to burn his own flesh with lit cigarettes offered a comfort and focus I couldn't provide. A world a million miles and many years away, but one so real to him that my mere presence invoked a violent response. I knew never to wake him suddenly, to always approach directly, but when his world overtook the world we shared the only thing I could do was withdraw. Understanding his trauma protected my mind, but could not protect my body from his. My Ehlers Danlos Syndrome saved me from a broken arm, when he was in a mental state so disturbed he thought I was attacking him. It was a line I wasn't prepared to cross and one he was too unwell to even know he'd broached. 

To say Cold Steel Rain is beautifully written sounds trite as it is a former soldier detailing the traumas of war and coming back to the civilian world. It is an achingly poignant insight into the kind of horrors most of us will never see and will never have to thanks to the bravery of others. Cold Steel Rain should be mandatory reading not just for those making decisions about sending others to war, but for all of us.





Tuesday, June 08, 2010

Bog Off - Exhibit 25 Euston Calling

This Bog Off was sent in by BSS reader and previous Bog Off contributor Louise Bolotin


The two disabled loos on the concourse at Euston Station in London leave much to be desired. For one thing, they are very cramped - long but far too narrow. Anyone in even a standard-size wheelchair would probably have a problem trying to do a u-turn once inside. It's barely 4 foot wide.

The other major problem is that Euston is busy. Very busy. At all hours of the day and night. Consequently, I can pretty much guarantee that whenever I need to use the loo there, it will be dirty. Wet seats, wet floors and litter (mainly loo paper) are generally a given, as might a grubby sink be. And, depressingly, if the checklist on the wall is accurate, it normally only gets cleaned twice a day.
So I was pleasantly surprised last time I got caught short while waiting for a train because the loo I entered was spotless. I nearly peed myself in shock, to be honest.
The plus points are a huge, full-size mirror, a coat hook (yay!), frequently more rarely sighted than a yeti in a wheelchair, the door rail (why do so few crip toilets expect people with weak hand joints to push open a wide, heavy door using only the handle?) and - joy of joys - not one, but two alarms. The cord alarm is actually hanging free, just as it should be, touching the floor. And on the wall behind the door there is also a wall mounted emergency button, next to the reset.
I shall be back next week in Euston - I wonder if the loos will still be as sparkling clean?

Thanks Louise! If anyone would like to contribute to Bog Off, photos and a description of the offending, or winning loo, can be emailed to benefitscroungingscum@hotmail.co.uk

Monday, June 07, 2010

Corsets and Counselling

I went to see my GP on Friday. Lovely GP has gone on her maternity leave. This could get confusing because my GP is lovely too and that's altogether too many lovelies. It's his practice though, so Top Dog GP it is. The name confusion is apt as I had to go and see Top Dog GP to sort out the inevitable hospital appointment inspired confusion. This lot of confusion is particularly complicated as it's arising from at least three different hospitals. 

Top Dog GP started laughing as soon as I mentioned the hospital inspired confusion so I knew he'd had at least one letter. When I said I'd seen the registrar rather than consultant at Freak Clinic he said that explained it all and suggested it might perhaps not be the service to medical education I'd thought I was offering as the registrar won't have slept for at least 5 nights due to his 'OMG complicated patient' induced terror.  I'm just counting myself lucky for only having lost an armful of blood in the name of medical education. Top Dog GP is yet to have the latest missive from Leeds but that should keep him giggling for at least half a day...the bendy specialist is known for his unique style of letter writing. 

We went over the whole Oxycontin thing and Top Dog GP also expressed concerns about the long term viability of my 'No Oxycontin' plan. He's right, as plans go it's not up there with the best, but doctors urging pain relief upon me is such a novel concept after all those years not being diagnosed that it perhaps doesn't register with me quite as it should. Still, I got the prescription I needed to continue with the 'No Oxycontin' insanity. I'd originally declined the strongest dose codeine and paracetamol because I wanted to see if the lower dose of 15/500 mg was effective enough. It sort of was but has been out of stock for weeks now so 30/500 mg it will have to be. 

That, and a depressing conversation about the costs 'elf n safety have added to the new practice building was pretty much that. £220 for a sink that's not allowed to have a plug in it because of some mysterious health and safety, no plugs in consulting rooms concept. The ConDem government could've had that £220 to help with the budget deficit if health and safety let the NHS order from B&Q like everyone else.

A few weeks ago I initiated divorce proceedings against my hips. Fortunately the orthopeadic version of Relate, the physio terrorists, have been doing their job and both parties are at least willing to enter discussions. A unifying subject is disgust in being given the medical kind of corset instead of the pretty kind. 




Disgusting or not the corset thing is also doing it's job and attending all death walks. Even if it does mean multiple dislocations putting the stupid thing on. I did think it might be a sign not to go death walking when I heard the unmistakable 'pop, pop, pop' as multiple joints hurtle in and out of their sockets but then got really distracted by my urgent need for chewing gum, and then I was moving anyway and had to stick to the rule that it is only acceptable to be so stoned mid afternoon if it's in aid of something unpleasant. So off I went. 


It was indeed unpleasant, but at least it didn't rain. Pirouetting whilst wildly windmilling your arms is somehow even less cool in the rain, if it is even possible to be less cool than spinning uncontrollably on the spot in a public place. 


It's working though. I'm not telling my joints it is as they'll immediately go on a strike so stubborn even BA wouldn't know how to break it, but it is. All that walking face first into doorframes and excruciating pain is worth it for increased function, even if my muscles have yet to get the message.  I knew using Royal Mail to send it was a mistake...

Sunday, June 06, 2010

Sauce for the Goose...

Like most genuine benefit claimants I fear doing anything, even accidentally, which might potentially lead me to being accused of benefit fraud. "It's just not worth getting caught" is a phrase I hear often from other claimants who may have been offered odd hours of cash in hand work. The political campaigns against benefit fraud have obviously had an impact upon claimants who can't work full time even if they wanted to. 

"The benefits don't have to know" is something I've been told frequently since the MP's expenses scandal. Not as you might think from other claimants...those that I know are pretty much all still too scared of the potential of being investigated for fraud. I'm being told this by taxpayers, mostly those in the professions, even on one memorable occasion by one of my doctors. 

Seems like taxpayers are starting to realise that the benefits system might not be providing quite what they think it should provide to genuine claimants. Fed up with hearing about outrageous expenses claims from MP's and benefits claimants unable to access the support they need attitudes are changing. "I'm not paying so much tax so you can go without" is another expression I'm hearing more and more frequently.
 

Thursday, June 03, 2010

Lovely Landlords

It turns out that having a mobility scooter that you can't use because you've got nowhere at home to store it is far more frustrating than not having a mobility scooter at all. Especially in this glorious 'picnics should be obligatory' sort of weather. Who'da thunk that? 

 Scooter photo taken several years ago at a local food festival

Fortunately thanks to the wonder that is Twitter a builder is due imminently to give me a quote for building a ramp and installing a storage shed of some description.  The builder hunt has not gone too well up to this point. My neighbour had to turn down the job because they are fully booked up for the next few months and it's too big a job to get done in a few hours as a foreigner as they were hoping. The other builder I spoke to and arranged a time to come round for an estimate simply never turned up. I don't care how good a builder he might be, if he can't turn up or make a phone call to explain why not I don't want him working for me. 

In anticipation of at least one estimate I phoned my landlords to check they are happy for me to install a ramp. Private landlords frequently receive a bad press as there are still far too many Rachman's about. My landlords couldn't be more different, they rent properties for fair market values and crucially keep their properties well maintained. They are such good landlords that my upstairs neighbour moved from 3 houses down the road where her previous landlord had been quite happy to leave holes in the roof for years.

There tends to be much fuss in the press about the overall cost of Housing Benefit, and concept of 'free' local authority housing. What isn't usually mentioned in the press is that most people are forced to rent in the private sector because of the lack of local authority properties, and that renting in the private sector means paying commercial rents. It is an even worse situation for disabled people as there are very few adapted local authority properties and of those there are, most are restricted to people over 65.  

I was incredibly lucky to find an affordable ground floor property and even more lucky with my landlords. When I spoke to them to ask permission for the ramp they immediately said yes, and wanted to know who would be footing the bill. They expected the work to be funded and carried out by Social Services so that it wouldn't cost me. I could apply to Social Services for the work to be done but waiting times are exceptionally long for such adaptations and I want to be able to use the scooter this year not wait until next. Some local authorities have waiting times of up to 8 years for adaptations such as ramps.

I've also had previous experience of Social Services idea of adaptations which has been overwhelmingly negative. Workmen, when they eventually turn up tend to scratch their heads and refuse to do work because it's 'too complicated'. The work that they do do is often of a dangerously low standard; many years ago Social Services fitted an extra banister rail to help me go up and down the stairs. It looked nice...until it completely pulled out of the wall after a few weeks of use. I only weigh about 7 stone so that was impressively poor workmanship! 


Once my landlords heard it would be me footing the bill they told me to get a couple of quotes and that they are sure they'll be able to do the work for a lower cost themselves. They even offered to store my scooter in their garage until the work is done. Let's hear it for lovely landlords! 

Tuesday, June 01, 2010

Bog Off-Happy 2nd blogiversary


On Sunday I went to see Cirque du Soleil at the Liverpool Echo Arena, featured in one of the earliest Bog Off blogs. I thought it would be interesting to see how well the accessible toilets at the Echo Arena are holding up some two years later and so had a rummage through the Bog Off archives. 

It transpires that the very first Bog Off was two years ago today. A night out in Chester for Roland's birthday meant I found myself in one of the most dangerous disabled toilets I've ever been in. Red and I were seeking somewhere to reapply our lipgloss and after much fuss trying to track down a member of staff with a key to access the toilet we stared in horror at the scene before us. The floor was soaking wet, chairs and boxes of alcohol were piled up obstructing access and of course there was nowhere to apply lipgloss. In retrospect we should just have nicked the champagne and be done with it, but instead the idea of Bog Off was born.

Since then there have been some 30 odd examples of Bog Off awful disabled toilets, either toilets I've visited myself or examples sent in by readers. There have been one or two examples of outstanding accessible toilets, those at the Scottish Parliament building and Copenhagen airport being the most memorable, but most Bog Off's have been a fair and representative example of the appallingly low standards of most 'accessible' toilet facilities. There is even a special meeja luvvy section of Bog Off featuring photos taken by secret sources at The Guardian's offices and BBC Manchester. There was even a special Bog Off Down Under taken in Hobart, Tasmania by fellow bendy blogger Veronica Foale.


The disabled toilets at Liverpool Echo Arena still look much the same as they did 2 years ago. Built to minimum DDA standards they are too small for most people, making transfers a cramped experience. I'm not sure how those needing a personal assistant to stay in the toilet with them would fare. The toilet doors open directly onto the main pedestrian area of the arena, and as is typical there is no privacy curtain. A privacy curtain is such a simple and very cheap adaptation to include but for some reason they are rarely included in disabled toilets. Privacy curtains are important to enable a personal assistant either to wait outside the toilet without having to expose the disabled person to public view or to remain in the toilet with the person yet give some semblance of privacy. 

The good points are that the Echo Arena has clearly made access a significant part of it's design and there are disabled toilets adjacent to every doorway to the arena which means no queues. They have also made an effort with design using bright colours. Despite that the toilets have a very gloomy appearance when inside them.


The main problem with these toilets is that they stink. I mean really, really stink. The smell hits you in the face as you open the door. There was a pungent aroma of urine and faeces when I visited the spotlessly clean toilet before the start of the show, but by the end of the show the smell was so bad I was gagging.

 The good news is that Echo Arena included mirrors in their disabled toilets. The bad news is you'll be retching so much from the foul stench that you won't hang around long enough to use it! 





If anyone would like to contribute to Bog Off photos and a description can be sent to benefitscroungingscum@hotmail.co.uk Copyright or a photo credit will always be included.





Comedy without Cruelty

An excellent blog from outside the disabilisphere about the current fad for comedians such as Frankie Boyle or Jimmy Carr to use 'humour' as a way of excusing disablist abuse.