Consultation Extended

I planned to blog tomorrow about the fact there are only a few more days left of the consultation period for DLA.  However, this afternoon the deadline for the consultation period was extended until 18th February.  This was done very quietly and hasn't really been announced.  No reason behind this has been given but the online submission is no longer available due to IT Problems.  Instead there is a document on the consultation website with the questions and an e-mail address to send them too.

Please if you can use these extra few days to lobby your own MP, or Maria Miller or any other MP about this.  Send them the link to OMBH - to your own particular submission if you made on and you're happy to do so.  Tell them what DLA means to you, what losing it would mean to you.  I know it's really tough sometimes to share those exacting, private details but so many people did it as a part of OMBH and doing so again could make a huge difference.

Lets make these next 8 days count.

Challenging Mental Health Stigma and Discrimination

Inspired by the current stereotyping and bullying of those with Psychiatric Illness by the British Media.

A few days ago I cried.
The uninitiated might be thinking: "So what! He's one of those miserable depressives": but: "miserable depressives" is just one of the stereotypical pigeonholes that writers, journalists, and others, have tried to fit us into throughout time. I am capable of crying for England of course, when the dark extremes of my depression visit and I sit, guilt ridden, remembering every foolish thing I have done (and over 60 years that's quite a lot). At such times I also remember every "special" person the "mad" me has hurt and driven away, and then I can cry uncontrollably for days. In response to someone saying "can I help", "what's wrong", even "I love you", rivers of tears, flowing over my cheeks and mixing with the endless lava flow of snot the comes from who knows where at times like this.
This though was a different sort of crying, it was "Normal" crying. The sort proper human beings do, some at the drop of a hat, as a reaction to things both happy and sad. For me that luxury is restricted to certain times, like that bit at the end of The Railway Children when Jenny Agutter says: "Daddy! My Daddy" or when ET says "I'll be right here", or in "Armageddon" when "I don't want to miss a thing" begins to play. (God, I'm almost emotional just thinking about it - now that is almost "Normal"). Truth is, there are times when I would love to have a good cry, if only to give my sinuses a good clear out, but it doesn't work like that for me. Like many depressives, over time, I have become so skilful at not betraying my in a mood by crying in public that my tears have almost become detached from my emotions and have become attached to my thinking instead.
The "normal", spontaneous tears I cried this week flowed after a dear friend I have made on Twitter responded to my request to know why many of the people with physical and psychiatric disabilities on Twitter use the term "Spoons" to describe their energy levels. I'd sort of figured out that "I'm running out of spoons" meant running out of energy and that "lots of spoons" meant having plenty of energy but I was wondering where the term had come from. 

My friend directed me to an Internet site where, with that clear white light that comes from understanding growing ever brighter, I read the brilliant "Spoons Theory" of Christine Miserandino. The tears were a mixture of happy and sad. They came because I was learning the vocabulary of disability and at last I had been given an alternative to saying "not too bad" when others inquired about my state of health. Questions which are easy enough to answer when body and mind are well, but requiring such a complex answer when they are not that it's not worth trying to give one. You know the times I'm talking about here, those times when, at best the listener will become emotional, over concerned, or unnecessarily pitying of circumstances that are just everyday life for us: and at worst: will become expressionless, eyes glazing over, as they search for a mental escape from what I am saying while attempting to retain an "I'm really interested" attitude. Don't know about you but I intensely dislike it when people react to my everyday life as if it is something horrendous, I quite like it most of the time.
Christine Miserandino's theory really resonated with me on more than an emotional level. In sociological terms I am something of a "Symbolic Interactionist" as was my sociology "hero" Erving Goffman. Goffman saw language as a crucial factor in the way society functions. His work laid the bedrock of "Stigma" and "Labelling" theory. In his 1960 work "Asylums" he identified the ways in which language is used by social groups to exclude those they do not wish to become group members. After observing what went on in a psychiatric hospital he identified the ways in which both the "Staff Group" and the "Patient Group" used vocabulary to exclude the other while there was a universal language used by both when it was in the mutual interest of both to interact in a meaningful way.

Discrimination is heavily reliant on language for its survival. The easiest way to discriminate is of course to just walk away when an unwanted person or group come near, but when this is not possible, or when the discriminators want to retain possession of their territory, it is words to which they turn to make their point. This trick is learned very early in life, in the school playground, or, if parents use the language of discrimination in the home, even sooner.
Bullying is discrimination in its most violent vocal form, especially the very subtle bullying where children exclude one of their number by talking about things the unwanted has no knowledge of. Most of us will have experienced this at some point during our childhood and we all know that it is much harder to deal with than the overt discrimination of name-calling as it is almost impossible to prove that it is being done to intentionally hurt. Hence, the more sensitive child begins to believe that they are being excluded because there is something wrong with them and the embryo of an adult with self-image problems begins to grow while the seeds of some forms of mental and psychological illness are sown.

My sisters and I endured quite a lot of name-calling. Living in poverty after my father left when I was two and a half, we were clothed mainly in hand-me-downs from older cousins, in second-hand clothes provided by charities or, worst of all, purchased at a local jumble sale. In the latter case it was always possible that the previous owner of these clothes was a classmate.
Bullying based on our ethnicity came later. Many people cite the "Rivers of Blood" speech by Enoch Powell in 1968 as the legitimisation of racial discrimination in this country but the opinions of Mr Powell affected us before that.
It was as a junior minister in 1955 that he first sowed the seeds of discontent regarding the number of immigrants coming to this country in a Parliamentary speech. In 1962 he was the Health Minister when the Thalidomide scandal occurred. Thalidomide was a drug commonly prescribed to women suffering extreme morning sickness during pregnancy. As a result many of the women gave birth to children with missing limbs. During the media clamour for compensation Powell refused to meet the children claiming that the mothers were responsible, saying "anyone who takes so much as an aspirin" during pregnancy is, in his opinion, putting their unborn child at risk.Not a nice man. 
It was a speech he made during the 1964 general election campaign that affected my sisters and me. In this speech he claimed for the first time that the numbers of immigrants in the United Kingdom would lead to problems "for us and our children". Interviewed by Norman Fowler of The Times his reply to one question was that Immigration was the biggest issue at that election. The Times never printed Fowler's article. Powell was the only one talking like that at the time and the paper felt he was out of touch.
But that 1964 speech laid the foundations of the bonfire that Powell ignited in 1968. For my sisters and I are life changed in 64 as people who had previously been genuinely inquisitive about the fact that our mother had been born in India began to distance themselves from us and make derogatory remarks in our presence about "Immigrants".
Our Mum's response to our tears over this was to say "call them names back": not easy that: not when you're a child, not when responding in that way might alienate further the bullies whose acceptance you are desperate for. 

Many comedians say that they became "funny" in the playground where they used humour to gain acceptance into groups that previously did not want them. I developed a strategy where I anticipated the attack of bullies and, humorously, took the words out of their mouths by using their ammunition in a humorous, self-deprecating way that made any attack by them pointless. This stood me in good stead when, in my early twenties, I first experienced discrimination, name-calling, and mockery because of my mental illness. The television programme "Shoestring", (who’s central character was a private detective who had suffered a nervous breakdown) was very popular at the time and one work colleague in particular derived great pleasure from shouting "Here comes Shoestring" whenever I approached. I would turn the embarrassed laughter of our other colleagues into genuine belly laughs by responding in character, with something Eddie Shoestring had said in the most recent programme.
I didn't really see this as discrimination at the time, (in my mind "real" discrimination was what was happening to black people in the southern states of the USA and in South Africa). I turned that around and viewed it as someone trying to cope with his own embarrassment at my presence but I gradually realised that this is exactly how most discrimination takes root, by reducing a person to a stereotype.

I guess I first took a political view of discrimination 15 years later when, after years of voluntary work and move to "unqualified" full-time Social Work, I was introduced to the work of Erving Goffman while at university studying for my Social Work qualification. By then I had witnessed, and supported where I could, the civil rights battles of Black and Asian people and Women in the UK. The Gay Rights movement was just gaining pace.
My view now is that the major tool in breaking down discrimination based on illness and disability is that minority groups, like us loonies, need to reclaim the vocabulary of the ignorant in the way movements such as the Gay Movement and the Anti-racism movements did in the past.
I believe that by talking the language of mental illness discrimination and stereotyping (such as nut-case, loony, round the bend etc) and using these as terms of endearment or humour between ourselves, we reduce the hurt and the sting when they come from "outside", thus disarming a major weapon of the bullies, the Ignorant, and, (sadly), the charities who purport to represent us but who patronise us by wanting us to present an "acceptable face" of Mental Illness to a public that can not be bothered to understand us. Even worse, in the case of the latter, presenting an "acceptable public face" can determine the level of help we receive. 

Stepping aside from mental illness for a moment, with the coming of the Social Model of Disability, a term first coined by disabled academic Mike Oliver in 1983, came increasing realisation that charities served best those who fitted neatly into the stereotype-based pigeonholes the charities themselves had constructed. The major determinant in deciding eligibility was that the disabled person, or, in the case of children, their parents, adopted the stance of grateful victim. Charities socialised those they purported to help into a culture where everyone was "grateful for small mercies" and never questioned why there was not more. Those who needed help from the charities soon learned that rocking the boat would lead to problems for them or those in their care which, at worst, could result in denial of service.

The fact is that, in common with those with physical disability and learning difficulties, we loonies did not become disenfranchised until the coming of the Industrial Revolution. Before that time we would have been found a useful role (in line with our abilities) within the family production unit. This can still be seen in countries like Greece and Turkey where, on one occasion I witnessed a young man with no legs using his hands to propel his carriage trolley from business to business carrying messages between them, and another who was clearly conversing with beings the rest of us could not see while he collected deck chairs. Here at home, one of the reasons that I choose to shop at the supermarket I use is because at times the whole environment is overwhelmed by the gleeful high pitched singing in recognition of a familiar face by a shelf stacker come odd-job who clearly spends the rest of his time in a parallel world to this one.
There have been cultures where the psychotic were revered as visionaries, and those with less visible mental illnesses or psychological disorders were regarded as "sensitives", in touch with both previous and future cultures as well as the one in which they live. Mental illness was once not the problem that society claims it is today.

I guess I became "mentally ill" on the day in my teens when my childhood thought that "I wish I was dead" became - with the realisation that my fate was in my own hands - "I'm going to kill myself".
Back then in the early 1960's and living in rural Oxfordshire my knowledge of mental illness was based on the "myths" which abounded about three huge Gothic Hospitals, all built some distance from the homes of the "normal" majority. Those who were "sent" to the hospitals were rarely ever seen again. Those who did return were invariably "changed", life's glitter and spark extinguished by the "chemical cosh" or by the electric shock treatment that adults spoke of in whispers, leaving my childhood imagination to fantasise about people being wired up to a machine similar to Frankenstein’s.
The deadened eyes and slow speech of those who had experienced this treatment did nothing to counter that vision. One clear example was provided by the Aunt of my best friend. She spent all of the 1950's incarcerated with the male created, female only, psychiatric condition known as "low moral fibre". Basically she had given birth to a child before she was married. 
Witnessing her immunity to any form of happiness or stimulation, the way she welcomed success or failure with the same blank expression, ensured I never told a soul as my teenage advancement brought awareness that, at times, I saw things others did not see and heard things others did not hear. I became aware that my thoughts were often different to those of my peers, a major example being the way they reacted with fear or horror to any mention of death, especially suicide, a concept with which I was very comfortable as I spent some time with those thoughts daily.

While I was single I was able to conceal my depression as long as I gave it an occasional voice through the hidden poetry I would write from my darkest places.
I made a deal with myself when I was 18 that I would never marry or have children who might "turn out like me". However, love turned out to be a more powerful psychosis than my own and, when my depressive cycle came round during the seventies; I had to seek medical intervention as the illness was impacting on my wife and children. (Because of the potential side-effects of the drugs I was taking I had to tell my employer "in confidence" about my illness. Hence the Shoestring comparison and whispering huddles and giggles when I approached some of my work colleagues).
Following the break up of my family (now there's a familiar mental illness tale) in the mid eighties I plunged to previously unexperienced depths of depression as “reactive depression” to my loss became entangled with my endemic “clinical depression” and I required "time out" in a therapeutic community. At that time it was necessary to make my mother and sisters, and my (by then different) workplace, aware of the illness (which I led them to believe was occurring for the first time).
As I recovered I became aware of the three distinct approaches towards me: there were those who spoke in whispers whenever I was close: those who hid their own lack of understanding behind callus, insensitive or offensive, "well meaning" humour: and those who felt the need to treat me, alternatively, as an invalid or as a child. What was clear was that everyone was so focused on my diagnosis that they had stopped seing "Me".

Because of those experiences I never attempted to return to the same "life" after either of my next two major breakdowns. 
This had advantages; I obtained qualifications in both Social Work and Adult Education and had successful careers in both between relapses. I learned that answering the "Major Illnesses" question on application forms with the word Depression was a big mistake. I found that because of the range of my experience I would always be invited for interview if I wrote "will discuss at interview" in that space. At the interview I would claim, not dishonestly but not strictly accurate either, that I had suffered a major "emotional breakdown" following unfortunate family circumstances; at which point most interviewers would avoid eye contact and apologise for "dragging up" the past. Interestingly, and I suppose naturally, they could all identify with this concept whereas the mere mention of psychiatric illness led their thought processes to the stereotypical images of madness promoted by the media and that wonderful term; unstable.
My spinal injury had occurred and I was physically disabled by the time my teaching career ended with my longest depressive episode yet in 2005. At that time I no longer had the will or the energy to protect others from my illness so, with the help of my partner and the staff at the local psychiatric day hospital, I "Came Out" to my family and closest friends, revealing the full history of my breakdowns and the suicide attempts they had been unaware of.

The reason I have borrowed the term "coming out" from the Gay Community is that from that day I no longer fear the stigma, the insults or the patronising attitudes of society.
This is me, I am now officially a loony, so when (at 55) I grew the pony tail I've wanted to grow since I was 18, I just shrugged of the complaints and sarcastic remarks. "What do you expect, I am a nutcase". These days if I am not well enough to do something I tell the truth and seek whatever help, or, more often, the isolation, that I require.
No more excuses, no more lying to those I love, no more "putting a brave face on". Like the grand old Duke of York, “When I am up I am up, and when I am down I am down, and when I am only halfway up” etc.
Hence, my delight at being led to Christine Miserandino’s "Spoons Theory". I have since directed all of my nearest and dearest to the website and I expect them to understand why I will only give a one word answer, instead of having to repeat my entire medical history, whenever I am asked that "how are you today?" question.

The thing is, now I am an out and out Loony, happy as a pig in shit, it is the establishment, not the 'man or woman in the street' that discriminates against me. Two recent examples:-
1: When I sought legal advice recently to fight discrimination against me because of my physical disability, I was told by a legal charity formed specifically to deal with situations like the one I was involved in, that seeing the problem through might be "a waste of" my "time and energy". Nothing to do with my physical disability that so I think it's clear which of my incapacity's led to that comment.
2: You may have come to realise through this post that I now believe in facing negative labels and stereotypes head on. I wrote a poem entitled "I am a loony from the bin" (you will find it elsewhere on this blog), which I actually showed to people. It was praised by my colleagues, the social workers, and the psychiatric nurses at the day hospital. In it I take all the derogatory terms about mental health and turn them in on themselves. Reclaiming the language of Mental Health culture from the bullies in the way Anti-Racist movements and the Gay Community had done in the past.
With the encouragement of my supporters, I sent the poem on different occasions to two separate mental health charities who were requesting creative input from “service users”. Neither of them acknowledged receipt of the poem. I am left to wonder what might have happened if I had sent a wholesome, clichéd, poem or essay using the vocabulary of the victim, the vocabulary they themselves use to represent me in their advertisements.

I refuse to "suffer" from depression or from my physical disability. I have both, that is true, but I spend my life consumed by neither. There are some aspects of my personality which are loved by others that possibly would not be there were it not for the understanding of others I have had to undertake on my quest to understand myself. I refuse to see the day that I will require a wheelchair as the negative many others do. On that day I will no longer have to experience the pain that surges through my legs, buttocks, and lower back every time I stand. From that day I will no longer be the slowest thing on the pavement, having the backs of my legs and bruised by the shopping trolleys of others who are too ignorant to simply ask me to move aside. From that day a part of my imagination which I have had to lock away will be released. When I was a child I ran or cycled everywhere at top speed with the voices of David Coleman or Murray Walker providing commentary on my actions as I became the fastest thing in the world. On the day I first take my wheelchair onto the streets I will become Tanni Grey-Thompson, so watch out world.

But best of all, on that day, when I return from my excursions and I am asked "how was it"; where I might once have felt obliged to describe every screaming muscle, I will simply say, "no spoons" and, rightly, I will expect my communication to be understood.

Brokenbrian February 4, 2011.

You will find Christine Miserandino’s Spoon Theory here.

Incurable

This is Megan's story. As it is long (circa 4500 words) she has given us an extract to post here.  I'd encourage everyone to take the time to read the full version if they can.  The full version is available as a google document.  Please be aware that Incurable contains mentions of suicide which some people may find triggering.

People always ask how you are but they never really want to know the answer. They just want to hear, “Oh I’m fine, thanks!” and they’re happy to believe that. They don’t want to know that you can’t move because the pain is excruciating, or that you can’t swallow your pills let alone food, that you had to change your pants twice yesterday because you didn’t make it to the toilet in time, or that you’ve been vomiting for weeks, waking up in sweats with raging migraines and cramps, or simply cannot move on some days and you never knowing which day that will be, or looking forward to a visit or an outing and having to cancel them time and again because you just aren’t well enough. 

Read more here

Vikki's Story

I’m an articulate 26 year old who is on DLA and I would like to write a long piece about how DLA affects my life, however I don’t have the energy to do so, so I will keep this brief.

I applied for DLA when my health deteriorated, I could of applied for it before but like so many others thought it was for people far worse off than me, after all I could walk to the toilet and make myself a sandwich, thats almost “normal” for a 16 year old isn’t it? When I did apply for DLA I was bedbound, unable to walk, at times I could move in bed and talk, at others I was paralysed. My DLA medical assessment really took all this into account... I had my reflexes tested and was asked to poke out my tongue! The decision came through as lower rate care and mobility so it went to appeal, was turned down so a tribunal was held in my blacked out bedrooms- even one of the assessors admitted they didn’t know why they were there. Since then I have been very lucky and have been on higher care and mobility and not had another tribunal but form filling every 2 years is very stressful and the energy taken by filling in the forms (with help from my Mum and CAB) spirals my health down. Last year my new consultant got involved and much to my surprise I was given an indefinite award, phew.. only turns out we will all be reassessed under new plans.

My DLA isn’t only just used on care needs, the NHS keeps turning down drugs my consultants want me on so I’m forced to buy them myself privately, and pay for admissions to a private hospital. Despite not having stepped a foot outside the door by myself for over 10 years I’m not entitled to an electric wheelchair because I can crawl on my hands and knee’s to the toilet, therefore I am trying to save what DLA isn’t taken up by medical needs to purchase a wheelchair, I already had to top up a voucher to get a reclining chair so I could sit at a table and buy some splints to give me a chance of standing.

DLA needs to stay, those who need it will be put through hell in fighting to retain it, those (very few people) who are making fraudulent claims will continue to be able to fight and play the system, the new proposals simply aren’t fair.

An OMBH Contribution from Peter Lockhart

Social care in the UK has been under the cosh for many years including
under the last Labour government. However we got by, a combination of
DLA, council services, free bus travel, Incapacity benefit, housing
benefit etc saw us get by. We were never well off, it was always a
struggle but we coped. We couldn't go on holidays, often even with DDA
holidays were more expensive for disabled people, we didn't have the
same choice and this meant we couldn't shop around, going abroad was a
struggle especially outwith the EU as medical insurance was
prohibitive for people with long term conditions. Many hotels and
guest houses are still inaccessible or don't have disabled toilets.
Not just hotels. A night out for a disabled person in the UK has to be
planned like a military operation. Pubs, restaurants, bingo halls,
music venues even some theatres are still not accessible or don't have
toilets. Before going out a disabled person has to make sure that the
venue of their choice will be accessible or have toilets. It means
phoning ahead, checking parking, trying to find out what the
conditions are outside for instance if there are hills, high kerbs or
other obstacles that will need to be negotiated. I've been doing a
survey in Fife for venues suitable for disabled people, I turn up in
my wheelchair and check for access, manoeuvrability and facilities
such as toilets. Of the 50 places i';ve checked at present only 14 are
places I would recommend to a disabled person. In my home town of 13
pubs only 2 are accessible and with facilities. So nights out in my
home town are not really feasible. Not for me a pub crawl with the
lads. So its not just poverty that affects disabled people, there are
still so many restrictions to our lives.

Another problem we are now facing is the attacks coming our way from
the press, we;'re branded scroungers, hand out junkies, lazy,
feckless. Yes people will say but its not the 'genuine disabled' were
attacking. Really? What is a genuine disabled person. How do you know
what a genuinely disabled person or not. Its nasty, its viscous, you
have government ministers saying that we cant afford the level of
disability benefits. When they say that what do they mean, that we're
a drain on society? So, with all the other difficulties we face we now
have to contend with attacks from the press. We do feel it, where a
couple of years ago I was confident going out i'm now beginning to
feel less so. i wonder what people are thinking, I worry that people
will be looking at me with suspicion in short I'm starting to feel
worthless compared to how I used to be.

The whole point of the attacks has been to soften society up for cuts
in disability benefit. Stories in the papers on a regular basis about
people claiming benefit who are entitled to it, stories of people who
have run a marathon while claiming DLA. But the fact remains that
those cases are rare. What you don't read in the press are th stories
of the mistakes, the stories of desperately ill people being turned
down for DLA. Even more common are the numbers of people being refused
the new sickness benefit, Employment support allowance or ESA. Labour
introduced ESA as a replacement to Incapacity benefit. Incapacity was
a benefit which was in fact very difficult to get, there was a huge
form, then you had to allow the DWP to investigate your health, they
had access to your GP, hospital consultant your medical records. Even
with all that they then asked to to attend an examination from one of
their own doctors. The last Labour government decided that sick and
disabled people should be working. Of course many just aren't fit and
that the many workplaces just aren't suitable. Add to that the
prejudice that still exists. But the government brought in ESA anyway.
Most failed the test and were told they were fit for work. however 40%
of appeals were successful. Imagine if in the criminal justice system
40% of all convictions were overturned on appeal, there would be an
outcry. Part of the problem is the government has handed the system
over to a private company. ATOS origin.

Its going to get worse, the Tories have decided to scrap DLA
altogether and replace it with a new but much harder to get benefit,
this benefit won't be available to many disabled people. For instance
many people who use wheelchairs will be excluded because the
coalitions says that a wheelchair gives people mobility and that
should be taken into account when accessing the new benefit which is
to be called the Personal Independent Payment or PIP. Wheelchairs they
argue gives a disabled person independence and so they no longer need
disability payment. They argue that with discrimination laws,
improvements to transport and access to building the need for benefits
has lessened. They are wrong. Without DLA people like me will be come
housebound. We won't be able to afford cars, buses are still largely
inaccessible,as i;ve already mentioned many places of entertainment
and work are

Early Day Motion on the Disability Living Allowance Consultation

The Broken of Britain is delighted to announce that an Early Day Motion (EDM) has been tabled in the House of Commons on the DLA reform consultation. EDM 1332 was tabled at our request by Hywel Williams MP (Arfon), who has a record of disability rights activism. The EDM reads as follows:

DISABILITY LIVING ALLOWANCE CONSULTATION
24.01.2011

Williams, Hywel

That this House expresses concern at the presentation of the case for reform of Disability Living Allowance (DLA) in the public consultation published on 6 December 2010; believes that the consultation incorrectly confuses correlation with causation between DLA claimants and employment levels or motivation to work; notes that DLA claimants tend to be older, less well-qualified, on benefits for longer and in poorer health than other disabled people; is of the opinion that many of the claims made in support of changing DLA are unsubstantiated in the consultation text or the supporting evidence; does not accept the argument that the identified problems with the present format of DLA are insoluble without the introduction of a costly new benefit; further believes that the presentation of the case for these reforms is highly flawed; and further expresses concern that the language used in the consultation may mislead readers when drawing conclusions from the evidence presented, and may therefore influence their response to the consultation.

Early Day Motion (EDM) is a colloquial term for a notice of motion given by a Member for which no date has been fixed for debate. EDMs exist to allow Members to put on record their opinion on a subject and canvass support for it from fellow Members. In effect, the primary function of an EDM is to form a kind of petition that MPs can sign.

This particular EDM must be signed by as many MPs as possible to get press attention. The Broken of Britain asks that you write to your MP urgin them to sign EDM 1332. A brief e-mail should suffice in this case:

Dear Member of Parliament,

Please sign EDM 1332: Disability Living Allowance Consultation, drawing attention to the flaws in the case for DLA reform published by the Department for Work and Pensions on the 6th of December, 2010, and expressing the House's concern that these flaws may influence the Public Consultation on the matter which closes on the 14th of February, 2011. DLA reform may well lead to real hardship and poverty for many disabled people, and it is important that you oppose any changes that may lead to such outcomes.

Yours sincerely,


This post originally appeared on The Broken of Britain blog

You know you've got CP when...

Looking at a packet of medication and realising that you are potentially two tablets away from finishing a long term course of medication is very exciting.

(This entry is otherwise known as Emma's CP: It's not all about the wheelchair.)

I've been taking Terbinafine since September and I have an appt with my GP tomorrow morning to discuss whether it's too soon to take me off it or not.  All week I've been counting down and suddenly today I'm like "hmmm maybe she won't take me off it yet."

Basically due to a combination of Onychomycosis (fungal infection) and CP I pretty much had no toenails in September.  I hadn't had proper ones for years. I can't cut them myself and no one could cut them for me due to the infection.  I kept catching them and ripping them off by accident meaning they got infected.  One of my parents would have to come round and help me clean them properly and apply plasters and antiseptic etc.  Sometimes blood would drip all over the floor when I wheeled to grab a towel or something and then to my bed so I could transfer and do the best to wrap it up until someone got her to do it properly.  That would need to be cleaned up by whoever came.

I couldn't use the normal topical treatments because they require daily application and I couldn't reach to do it myself.  I'd spoken to my GP a while ago and she gave me something which cleared it up but only the skin around my nails, not my nails.  It wasn't the optimal treatment because of my CP. It was a spray (which actually said on there it wasn't for nails but she said it was worth a shot).  

In August I went back, this time to a locum.  This was at least a year later and my feet had gotten worse in the meantime.  He took one look at my feet and declared all of my toenails to be completely destroyed.  He took a sample (with great difficulty) and sent it off for testing.  Apparently it was an extreme case but he needed the tests to prove that.  I was given oral terbinafine and I've been taking it daily since September.

Terbinafine is a really strong drug and can cause liver problems.  It's not been tested for really long term use I believe.  I've been worried about taking it and would have preferred one of the lesser treatments but because of my CP it just couldn't be done.  I have had liver function tests done part way through the course and they're fine.

And now I'm hopefully coming off of it tomorrow. If not now then in another month or two I'm sure.  But most of all. I have toenails again.  They aren't right but they are a lot healthier than they were.  And I've only ripped them off two or three times since September.  Considering I was doing that probably once a fortnight and occasionally once a week that's huge.

originally posted here