Monday, 31 December 2012


The end of the year is traditionally a time for taking stock, so on this, the last day of 2012, I'm going to spend a while looking back. I want to summarise some of the good things that have happened as well as some of the not so good things.

  • I was proud to be involved with the dissemination of the Spartacus Report. I helped to collect supportive quotes from celebrities, posted them on here, and publicised them on Facebook and Twitter.
  • I started writing fiction! I completed a short story, the first fiction I've written since leaving school more than three decades ago. I'm still working on it, redrafting and so on, and I'm also plotting out some more. The long-term plan is that I'll build up a collection of short stories loosely themed round disability, then possibly sell them on Amazon as an e-book.
  • I organised a meal for 28 people in Birmingham, cooked by Hardeep Singh Kohli and raising funds for Shelter For The Storm.
  • I didn't blog nearly as much as I would have liked to, but most of the posts I did do were picked up for cross-posting on other websites.
  • I finished the year ranked No.7 in ebuzzing's Health Blogs.
  • My lovely cat Bing sadly died.
  • But gorgeous Kaya came to live with me instead.

  • I went to some great gigs and some excellent theatre shows.
  • I trekked down to Peckham for a lovely party at Malgosia's, and met Caroline from Poland and lots of other nice people.
  • My health wasn't that great, but I'm still breathing and still going!
  • I appreciate my "real life" and online friends more than ever. Love you all x

Friday, 16 November 2012

Pudsey Bear’s WCA

This is a guest post by Sarah Ismail, editor of the Same Difference blog.

Here’s what happened when Pudsey, the disabled bear, went for a Work Capability Assessment to the offices of ATOS.

ATOS Worker: Hello, please sit down.

(Pudsey sits, looking confused)

ATOS Worker: So, he can sit independently. How are you today?

Pudsey: Good, thank you.

ATOS Worker: Hold your arms out, turn your hands over. Straighten your fingers.

Pudsey: I don’t have hands, or fingers.

ATOS Worker: Hmmm... stand up on your tiptoes.

Pudsey: I don’t have toes... or feet.

ATOS Worker: Hmm... please remove hat horrible scarf from across your face. Open your right eye.

Pudsey: It’s not a scarf, it’s an eye patch. And I don’t have a right eye. One of the children pulled it off. That’s why I had to stop working. I’m partially sighted.

ATOS Worker: Children? You have children? You’re not disabled! Disabled people can't have CHILDREN!

Pudsey: They’re not my children... I’m a charity mascot... they’re the children I help.

ATOS Worker: A charity mascot? So, you already have a job. Disability benefit fraud... well well well.

Pudsey: But I’m a partially sighted teddy bear with no fingers, hands, toes or feet...

ATOS Worker: Well, Mr Pudsey, if you’re fit to be in the same room as children, you’re fit to work. Close the door on your way out. NEXT!

Children in Need and Inspiration Porn

Tonight is the annual Children in Need telethon. Usually staid newsreaders will dance in their pants, the casts of soap operas will stage production numbers, and pop groups will try to revive flagging careers - all to encourage the Great British Public to phone in with donations to help disadvantaged children in the UK. Members of the public will already have completed various sponsored challenges: shaving their heads, lying in baths of baked beans, and so on.

So...great, right? Charities get money. Celebs get to tit around doing fun things and feeling the glow of philanthropy Members of the public get to laugh at said celebs and also sometimes take part in events. Win-win-win!.

Or is it? What about the recipients of this largesse?

If a child is living in poverty, that's something the government should be fixing. I pay my taxes for that. (Yes, yes, I know, we currently have the ConDems, but I'm talking should.) It shouldn't be down to charity to sort out the problems of inequality in our society.

Then there's the whole pity thing. If you can bear to watch, you'll see a lot of kids in wheelchairs gazing out of windows, a tear in their eye. The message seems to be that if you're disabled, you're an object of pity, and can't possibly be happy. Well, dammit. I may be disabled, but anyone who tries pitying me will get their arm ripped off and beaten to death with the soggy end. And pity promotes charity, rather than inclusion in society. While I have my moments, like everyone else, I'm generally pretty happy. Disability doesn't preclude happiness, any more than any other human state does.

There's a thing that's been called "Inspiration Porn". It involves removing a disabled person's individuality and humanity, presenting a snapshot of them to get (generally non-disabled) people to gee their ideas up. The disabled person can be doing the most everyday thing: I've been called "brave" for doing my shopping (was there a killer shark in the vegetable aisle?), but the "I" word will still be used.

Programmes like Children in Need are full of inspiration porn. The other day I watched the Children in Need special of a DIY show. They were renovating a day centre for children with special needs. At one point, I clicked on the Twitter hashtag for the programme, #DIYSOS.

Apart from one charmer who thought disabled kids got treated far too well, many tweets were fully inspiration porned up. For instance:
...puts all our little daily gripes into perspective when you see what these kids have to go through #DIYSOS
#DIYSOS amazing achievement, bless them kids & their families. Don't realise how lucky we are. 
Children, yes even disabled children, are more than fodder for inspirational snapshots of their lives. They are real, complex, sometimes happy and sometimes sad, sometimes angry with their situation and sometimes not bothered, and Always. Just. Kids.

Let's treat them as that, yeah? Rather than as pathetic objects, needing pity and charity. Not good for the self-esteem.

Sunday, 28 October 2012

Big Pharma and price hikes: not NICE

Having a long-term illness affects your life, and your concerns, in lots of ways. For once, I'm not talking about the symptoms, about pain, fatigue, or whatever characterises your particular flavour of poorliness. I want to write about the medications many of us need, and how we, and our doctors, are held to ransom by the pharmaceutical companies - "Big Pharma" - that manufacture them.

Epanutin is one brand name of a drug called phenytoin, which reduces the risk of seizures for people with epilepsy. It's used less than it used to be, but it's still taken by around 100,000 people in the UK. The cost of this was around £2 million a year.

The rights to manufacture Epanutin have recently been sold by Pfizer, to UK firm Flynn Pharma. They've repackaged it and increased the bill by a staggering 2330% to £46.6 million. All that has changed is the packaging: the capsules themselves are identical.

Because phenytoin is a relatively old drug, it's out of patent and any drug company can make it. So the NHS can just switch to another supplier, right? Sadly, wrong. Pfizer, and now Flynn, are virtually the only manufacturers of the capsules. Phenytoin is also available as a syrup and as tablets, but there's a problem. People with epilepsy tend to be extremely sensitive to levels of their medication in their blood, so they and their doctors are reluctant to switch from the Epanutin capsules. As a result, there's virtually no competition to make another version of phenytoin, and Flynn pretty much have a monopoly.

Result: Flynn basically have the NHS over a barrel. Because Epanutin is a standard treatment for epilepsy, it's more or less 100% sure that the NHS will go on funding it.

That's a standard treatment. What's the situation with newer medications?

Alemtuzumab, or Campath, is currently licensed for use in leukaemia. Neurologists have also been prescribing it off label for aggressive multiple sclerosis since a large, encouraging trial in 1998 and subsequent published trials showing it as superior to other MS treatments.

It's also considerably cheaper than other MS treatments, at around £2,500 a year per person. Or it was. The manufacturers, Genzyme, have applied for a license for Campath for the treatment of MS, and are expected to relaunch it at up to 20 times its current price. They have also withdrawn it from off-label use for MS pending approval, on the grounds that "any adverse event outside a clinical trial … may complicate the regulatory process".

When a medication is licensed for use in the UK, it then has to be reviewed by the National Institute of Health and Clinical Excellence (NICE). NICE has the difficult task of deciding which treatments should be funded by the NHS, to share out the limited amount of cash available. Should it approve the use of an operation that costs, say, £20,000 per person, or a medication for a completely different condition that can treat 50 people for the same amount? What if the operation saves lives, while the medication is for something far less serious?

So, assuming Campath is licensed for use with MS, NICE will have to decide whether the NHS should fund it. If it was still cheaper than existing treatments, with better results, it would be a no-brainer (though of course the risk of side-effects also comes into the equation). But it looks like it's going to cost far more than that.

We've all seen stories in the newspapers about people denied treatments by NICE, often for cancer. Is Campath going to be another such? MS is progressive: people denied Campath would be at risk of severe disability as a result. And if Campath is approved, what else will be denied?

These are two examples of big hikes in price. I have no doubt there are others. What these pharmaceutical companies are doing is certainly not illegal, but is it moral? These are existing drugs. There are no additional research and development costs to recoup.

Big Pharma. Getting bigger every day, and at the expense of sick and disabled people.

Thursday, 25 October 2012

Too clean to be healthy? Maybe not.

Have you ever had food poisoning? Maybe from a dodgy kebab, or a suspicious curry? We might think that we're only going to get food poisoning in the kind of restaurants that turn up on Grimefighters, but according to the World Health Organisation, around 40% of outbreaks happen in the home.

For more than 20 years, the hygiene hypothesis has been a dominant theory in immunology. The idea goes that our homes are basically too clean: a lack of early childhood exposure to infectious organisms and parasites increases susceptibility to allergic diseases (and possibly some auto-immune conditions) by suppressing the natural development of the immune system.

This has been seen to explain both the rise in allergic diseases since industrialisation, and the higher rate of allergic diseases in more developed countries.

Now a new study has challenged this theory. The researchers found that changing exposure to microbes could indeed be a factor in the rise of allergies, but there was no evidence that current cleaning habits are to blame. The authors denied that we are living in super-clean, germ-free homes.

Recently disinfectant company Zoflora commissioned a study of 2000 adults from across the UK, looking at their attitudes to home hygiene. 66% of us say our homes are not as clean as they should be, and 19% say they are not clean at all. Just under a third of us are so worried about the cleanliness of our homes that it can keep us awake at night. Many felt anxious, stressed or depressed about having an unclean house.

Zoflora fragrance and home bacteria expert, Nicola Hobbs says:
Our homes are fertile breeding grounds for bacteria to grow and multiply. Common microbes found in our houses include ‘superbug’ methicillin - resistant Staphylococcus aureus (MRSA) and bacteria like Campylobacter, a common source of food poisoning. A study commissioned by Zoflora found that a shower head had 300,000 times more bacteria than a set of front door keys – bacteria thrive in warm, damp places.
Research has shown that flushing a toilet sends a spray of water droplets into the air which may be contaminated with bacteria and viruses, and that these germs can float around in the bathroom for at least two hours after each flush before landing on surfaces. A study of 60 kitchens where raw chicken was prepared found that bacteria were frequently spread around – and that cleaning with detergent and hot water had little effect compared with the cleaning action of a disinfectant.
Cleaning with disinfectant isn't going to make the home completely sterile. If it did, we'd be dead too. We'll still come into contact with harmless bugs. But we can get rid of real pathogens like MRSA, E.coli, Campylobacter, and the flu virus H1N1.

Using disinfectant as a cleaning product can help you sleep better: you're less likely to stay awake worrying about cleanliness, and you're less likely to be in the loo suffering from food poisoning!

Monday, 17 September 2012

#Helpless: learn first aid!

First aid. It's all about grazed knees and sprained ankles, right?


First aid saves lives. Thousands of lives every year.

New research by St John Ambulance has found that we're over 4 times as likely to think that more people die of cancer than from a lack of first aid, even though there's compelling evidence to take both equally seriously. Up to 140,000 people every year die in situations where first aid could have saved their lives - as many as die of cancer.

People's reasons for not learning first aid are that they think it would be too time-consuming or it's not a priority to them. A worrying 41% say it would take the death of a loved one to make them learn first aid.

St John Ambulance has launched a new awareness campaign, including a hard-hitting TV advert, Helpless. It follows the journey of a man who is treated for cancer and survives, only to choke at a family event because nobody knows the treatment to save his life. You can view the advert below.

St John Ambulance chief executive Sue Killen said:
Cancer is a serious disease, which kills tens of thousands of people each year. When a loved one has cancer, although we do all we can to support them, over three-quarters of people are consumed by a feeling of helplessness.
‘In situations where first aid could help save a life we don't have to feel helpless, because learning life saving skills is so simple. That's why it's so concerning that fewer than 1 in 5 of us knows even basic first aid. This has got to change if we are to stop up to 140,000 lives from being needlessly lost each year.
'Our message is that first aid is simple to learn – just text HELP to 80039 for a free pocket guide so you can be the difference between a life lost and a life saved.
Please, get the pocket guide, read St John Ambulance's first aid advice pages, or (preferably) go on a first aid course. It's vital knowledge. You never know when you might need it!

Sunday, 16 September 2012

Strictly Come Dancing 2012 Launch Show

This season Strictly Comes Dancing turns 10. That’s a fair old age for a reality show. In the competitive early Saturday evening slot, can it maintain its viewing figures without constantly reinventing itself and alienating its core audience?

With Moira Ross as its executive producer since 2010, the show became increasingly reliant on props, gimmicks and shock tactics, from sequin-covered wellies for a Countryfile presenter to aggressively heterosexual competitors snogging very camp judges as part of the choreography. It was hard to recognise the dance being performed. The audience share grew considerably, but many diehard fans became disenchanted. The name Strictly Come Dancing appeared less and less appropriate.

Ross moved on at the end of the 2011 competition, to take charge of the BBC’s massive flop The Voice. So what of this year? Will things be any different under new co-executive producers Andrea Hamilton and Glenn Coomber?

Clearly, the show needs a good mix of celebrity contestants. But it’s disappointing to see that all the usual suspects are there yet again: The Ex-Eastender (Sid Owen); The ITV Daytime Presenter (Richard Arnold); The Older Man (Johnny Ball – and be prepared for endless jokes both about his age and about him being the father of Zoe Ball, host of It Takes Two); The Boy Band and Girl Band Members (Nicky Byrne and Kimberley Walsh); The Retired Sportsman (Michael Vaughan); The Fat One (Lisa Riley); The Ringer (Denise van Outen); The Game Old Girls (Jerry Hall and Fern Britton); The Actor You Recognise When You See Him (Colin Salmon); and The Children’s TV Star (Dani Harmer).

The only novelties are two medal-winning 2012 Olympians (Victoria Pendleton and Louis Smith). It’s a shame no Paralympians were included in the cast, but this was probably both impractical given the training timescale, and a mercy given some of the less sensitive jokes and comments they and we might otherwise have been subjected to.

The purpose of Saturday night’s 65-minute launch show was for the celebrities to be introduced to their professional dancing partners. This is a slim enough premise, so it was padded out with group dances, training VTs, and a performance by Mika.

The partnership reveals were fairly unspectacular, and in the main uncontroversial. The only one that seemed a little...odd...was the pairing of actor Colin Salmon with professional Kristina Rihanoff. There’s around a foot difference in their heights, so even when Rihanoff is wearing heels the differential will be substantial. It’ll be interesting to watch how she compensates.

There were some very good things in the show. New judge Darcey Bussell performed a beautiful rumba-based American Smooth with Ian Waite, which incidentally showed yet again why Waite should never have been dropped from the programme’s roster of professional dancers. A professional group cha-cha was good on the whole, although some of the lifts went a bit awry. As seems to be traditional in Latin dance, the men were either wearing wifebeater vests or had forgotten the purpose of their shirt buttons.

 But there were also some bad things. Some very, very bad things.

For instance, one thing that had not changed from last season was Bruce Forsyth’s level of presentational skills. It’s really not very professional to have to read the name of the programme’s new judge from a cue card, on camera. Moreover, actor Dani Harmer, wearing one of the show’s typically skimpy costumes, looked thoroughly uncomfortable when he put his hand on her back and asked if it was cold. And I’m not sure the situation was much improved when he moved his hand to the top of her head, as if leaning there (she’s not a tall woman).

Speaking of costumes, the Wardrobe department continue to struggle with dressing anyone over a size 12. They’d put Fern Britton in what can only be described as a pink sack with fringes, while Lisa Riley had been adorned with a stretchy blue wraparound curtain and a brooch. Neither flattered.

The programme finished with a group dance including both professional and celebrity dancers. It’s really too early to say definitely who shows promise, but Louis Smith, Dani Harmer and Colin Salmon all looked good. Nobody obviously had to be pushed into place, which is always a good sign! So much depends on the developing partnerships though, and what happens over the three weeks of training before the first full competitive week of the programme.

It would be wonderful if the new season of Strictly meant we’d be seeing more dancing and fewer pointless VTs, backstories, poorly delivered jokes, autocue and cue card fumbling, inappropriate behaviour, and so on. I’m not hopeful. But I’ll still be watching!

Sunday, 2 September 2012

Fighting in the disability movement

So, look. There are a lot of rucks going on inside the disability movement at the moment: arguments breaking out, people blocking other people on Twitter, not-so-subtle digs in articles and blog posts...the list goes on.

I don't know anyone who likes it like this. Most people I've heard from hate it, as I do.

Many things contribute, I think. But in happier times, when we weren't being assailed by the Coalition's attacks on the jobs, incomes and even lives of many disabled people, we wouldn't be trying to pull together in one movement. There are many of us within the anti-Coaltion, anti-WRB movement who would otherwise be fighting and leading our own campaigns. We like to be in charge. We find it difficult to be told we're wrong. (And yes, before you all tell me, I'm fully aware that I'm as guilty of that as anyone else!)

And many of us operate on a hair-trigger anyway: quite aside from the aforementioned Coalition actions, things like pain, fatigue, and other effects of our impairments can have a huge impact. Then there's family issues, again potentially so stressful and painful.

And if you're putting yourself "out there" on social media, you tend to attract trolls: no-marks with nothing better to do than hurl abuse, and who don't care that there's a real person at the other end. The sensible thing to do, of course, is to block them. But people like us don't like not getting the last word....

So what can we do? These are my ideas - grateful for any more (but no obscenities please ;-)
  1. Try to remember who the common enemy is! Hopefully this will get a bit easier once the summer recess is over and they're back in session.
  2. If you feel yourself losing your temper, take 10 seconds before hitting Enter. Could the person at the other end of the Twitterchute feel just as bad as you? Almost certainly!
  3. Remember to disagree with the opinion, not the person.
  4. It can be hard to tell somebody's mood in writing. Did they mean that as a joke? Sarcastically? Sod's Law says that inevitably we'll take things the wrong way!
  5. Block trolls. Early and resoundingly. Don't let them wind you up.
  6. Finally, we have to support each other, and pull together. We need everyone for this battle.

"Alone we can do so little; together we can do so much" ~ Helen Keller 

 Now, if I could only learn to take my own advice...

Edited to add: This excellent post by @markoneinfour looks at these issues from a specifically mental health perspective.

Saturday, 4 August 2012

Every breath you take....

My friend got a Brown Envelope from the DWP yesterday (they deserve the capitals).

DWP envelopes are terrifying: they contain our futures. Another friend spends most of her time in bed, barely able even to sit up. The letter in her envelope demanded that she attend a medical to decide whether she can get ESA. She was given two alternative locations: the nearer is on the third floor with no lift (she uses a wheelchair) and the other is 2 hours journey away, on inaccessible public transport.

The first person I mentioned got good news: following an appeal, she's in the support group for ESA (as she should be). But she's still uneasy. She can't help worrying that the DWP are filming her on "good" (read: less bad) days.

I confessed that I worry I'm being filmed through the windows of my house, if I do something like lift the kettle. She felt the same.

Others joined in the conversation. It began to seem that this was quite common.

Certainly, it's good to know I'm not alone in my paranoia. But isn't it dreadful that so many people are being made to feel this way?

Constant media coverage of benefit scroungers, and misleading use of statistics. Politicians with anecdotes of someone they met once who was really quite fit for work, honest guv. Dob-your-neighbour-in hotlines.

Just because you're paranoid doesn't mean they're not out to get you.

Friday, 27 July 2012

MS research roundup July 2012

Another research roundup, and so soon! But there's just been so much interesting research to tell you about.

We already know that someone's risk of getting MS is linked to where they were brought up: very roughly, the further away from the equator, the higher the risk. Another known risk factor is having antibodies to Epstein-Barr virus (EBV): people with MS are far more likely to have EBV antibodies in their blood than people without.

British researchers investigated the distribution of EBV infection, and found it was the same as for MS: infection was more common further away from the equator. We still have a lot to learn about what causes MS, but this could be a piece in the puzzle.

I've often written before about Vitamin D. Its importance is showing up over and over again in any number of different conditions, including MS. Now an Australian study is under way, to see whether taking Vitamin D can prevent MS. The trial will test 3 dosage levels of Vitamin D against placebo in people who've had a first attack of MS-like symptoms, and will run till 2016. It'll be interesting to see the results.

All of us with MS are different: each of us has different symptoms and a different disease course. We can look at averages, though. American researchers studied over 1000 people with MS. They found that RRMS does not inevitably develop into SPMS, and the onset of progression is more dependent on age than on how long the person has had MS.

As neurons are damaged by MS, cell metabolism is disrupted and there is a buildup of sodium. British and French researchers found that sodium buildup measured by MRI could indicate the degree of MS progression. In those with more advanced disease, sodium buildup in the motor cortex is correlated with greater levels of disability.

This is early-stage research, but could become really useful in monitoring disease progression. With advanced disease, sodium was raised even in apparently normal white matter. 

A group of researchers in Germany have discovered an antibody found in the blood of about half of people with MS that is not found in people without the condition. The antibody's implications aren't fully understood as yet, but in rodents it binds to and damages brain cells known to be important for neurological function.

In time this may lead to a blood test for MS and/or a treatment preventing the antibody from binding to brain cells.

Researchers in America have used monoclonal antibodies to stimulate myelin repair in mice with a condition similar to MS. Similar work had been done before, but using far larger molecules than in this research.

They found the molecules were effective, and quick and cheap to synthesise. They were also stable and unlikely to cause an immune response. Much more work needs to be done, but this could in time be a suitable candidate for human trials.

The nerve damage in MS is caused by T-cells, part of the immune system. American researchers are about to start clinical trials using an extract of sea anemone venom, which they've found is a highly selective suppressant of T-cell activity. They hope it should prevent further damage to the nerves.

It's already known that fingolimod (Gilenya / Novartis) reduces relapse rates and disease progression. Swiss researchers have now shown that it's also associated with a reduction in the number of lesions, and slowing of the rate of brain volume loss. Not everyone is able to have fingolimod, but for those who can, this is just another benefit of another hugely useful treatment.

Modafinil (Provigil) is approved to treat excessive daytime sleepiness in narcolepsy and some similar conditions. It is also used for fatigue and sleepiness in MS. In a small trial, people taking modafinil had no significant change in disability level over 3 years, while those not on modafinil did have significant changes.

A much larger study is needed, and particularly comparisons made between taking modafinil with different disease modifiers. This is a really interesting result though,with a lot of potential.

Taiwanese researchers carried out a meta-analysis of studies on the effect of cranberry juice on UTIs. The results confirmed that cranberries do protect against UTIs. The effect was particularly strong in women with recurrent UTIs. There were,however, concerns about the amount of sugar in cranberry juice.

Finally, some excellent news: Canadian researchers have found that people with MS are less likely to get cancer than the general population, particularly bowel cancer. The risk level varied for different types of cancer.

Further studies are needed to find out why people with MS have these different levels of cancer: it may be because both MS and cancer involve the immune system. Still, good news is good news!

Friday, 13 July 2012

Back to the institutions?

I suppose we're getting used to living with austerity. Rising unemployment. Prices going up while incomes don't. Half the shops in the High Street boarded up.

We could argue from now till Christmas about the government's economic policy and its priorities in spending. The fact is, as things stand, there isn't enough money to go round. And that seems to be impacting particularly on disabled people.

I've written before about the many problems with the benefits system for people who are disabled or have long-term illnesses. One thing that's remained sacrosanct, though, is our right to live independently in the community (obviously with appropriate support) - rights that are now enshrined in law.

That's why it's disturbing to see that Worcestershire Council plans to bring in a "maximum expenditure policy", imposing a cap on the cost of social care packages. People with significant care needs are likely to be forced into care homes.

The campaigning disability group We Are Spartacus's new report, Past Caring, analyses the council's proposals. As well as criticising the council’s current consultation exercise, the report shows the proposed policy:
  • Will mean disabled people get less support
  • Will mean a deterioration in care standards and quality of life
  • Could lead to disabled people forced into residential care, even if they don’t want to
  • Could force disabled people to rely on charity for the help and support they need
  • Goes against the recommendations of the Government’s flagship white paper on social care reform
  • Could be open to a legal challenge
There's no question that local authorities currently face huge challenges. But forcing disabled people to leave their homes, costing far more money in the long run, is not the answer.

We're having to get used to a lot of new things. They say you can get used to anything. But not this. Never this.

Tuesday, 10 July 2012

The Medical Ethics Association, the Telegraph, and the LCP

The Daily Telegraph recently carried an emotive, distressing story. Six doctors had written to the paper suggesting that the Liverpool Care Pathway (LCP), a structured system of care ensuring that people in their final days or hours of life are in as little distress as possible, was being applied inappropriately to reduce strain on hospital resources.

The aim of the LCP is to unite members of the multi-professional team concerning continuing medical treatment, discontinuing treatment, and comfort measures in the last days and hours of life. All non-essential treatments and medications are stopped. Treatments may be started for symptoms such as pain, nausea, or breathing problems.

In some cases, for instance if pain can't be controlled, terminal sedation may be used. As patients receiving this type of deep sedation are typically in their last few hours of life, artificial hydration and nutrition are not given: the patient wouldn't be eating or drinking significant amounts anyway, and fluids may make distressing symptoms like respiratory secretions and pulmonary congestion worse. Palliative sedation therapy doesn't hasten death: it just makes it less uncomfortable.

There were several things in this article I...took issue with, shall we say. I'll list them below.
  • It describes the LCP as a "controversial scheme". Quite the contrary: reviews have shown it to be effective and viewed positively by patients' relatives.One study found it reduced the extent to which doctors used medications which could shorten the patient's life. It is national policy in the UK, and now being introduced in other parts of the world.
  • Predictably, the article makes an issue of the withdrawal of artificial hydration and feeding. As I said above though, someone in their last few hours of life wouldn't be eating or drinking anyway, and hydration could actually make symptoms worse.
  • The six doctors concerned are "experts in elderly care". That doesn't make them experts in palliative care, a quite separate speciality.
  • The doctors claim there is no “scientific way of diagnosing imminent death.” Well no. Not to the second. But doctors and (particularly) nurses generally have a pretty good idea of who's on the way out. If a patient's condition improves, they're taken off the Pathway and start the appropriate treatments again.
  • The six doctors wrote their letter in conjunction with the Medical Ethics Alliance, a Christian organisation founded to promote pro-life policies. I don't know if they're all members, but presumably they're sympathetic to its views. The MEA believes that terminal sedation and the withholding of artificial hydration and nutrition is euthanasia. I think I've shown above why this is not the case.
If, as the doctors suggest, informed consent is not always being sought for going onto the LCP, then that's wrong and needs to be sorted out. But it's no excuse for scaremongering like this from the Medical Ethics Alliance and the Daily Telegraph. The LCP is good, compassionate, and evidence-based. It'll be a damn shame if people are too frightened to use it.

Wednesday, 4 July 2012

Tightrope #spoonie

Are you healthy? Pretty much? Imagine you're standing, there, wherever you are just now - living room, office, street - and someone runs over and gives you a shove. Of course, you're shocked. Sure, your arm might hurt a bit where they pushed you. But basically, you're OK. Your feet are firmly planted on solid ground.

But it's different for me, and other spoonies like me: people with dreadful, crippling fatigue caused by a long term illness such as MS, CFS/ME, lupus, cancer etc. You have to imagine we're standing on a tightrope, already a little wobbly. The result is that when we get that unexpected shove, we start wobbling furiously, and quite possibly fall off.

This, of course, was an analogy. The tightrope is our fragile health. The smallest thing - a few hours' shopping, or a sniffle that you'd shrug off - can send us crashing to the ground and put us in bed for a week.

And while we're walking our eternal tightrope, so much of our concentration is taken up with juggling: how much energy do I need to save to go out tomorrow? Is this just a bad day or am I getting a bug? I hope I can sleep tonight! How long can I put off the washing up, to save energy?

If you have a spoonie in your life...please don't push them?

Friday, 29 June 2012

Tony Nicklinson, informed consent, and the community

Seven years ago, Tony Nicklinson was an active, busy, family man. His hobbies were rugby and skydiving. Then he had a massive stroke, and was left paralysed from the neck down and unable to speak. Intellectually, he's unaffected. His condition is called locked-in syndrome.

Tony describes his life as "increasingly miserable". With his family's backing, he's gone to the High Court to ask permission for a doctor to be able to kill him. It's important to note that this wouldn't be assisted suicide, but something quite different.
  • Assisted suicide: others may help (eg provide drugs, help with transport) but the individual must perform the action themselves. Illegal. Seen by some as a disability rights issue: it's not illegal for an able-bodied person to kill themselves, but if someone's too disabled to do the deed themself and therefore needs help, the person who helps them commits a crrime.
  • Voluntary euthanasia: The individual is not able to kill themself, even with assistance. The only way they can die at will is if another person will actively kill them.
When you listen to Tony's pleas, dictated laboriously by eye movements, it's difficult not to be moved. But emotion isn't a good basis for making law.

And many people are as disabled as him, and lead happy lives. If the courts decide that Tony's life is so miserable that it's OK for him to be killed, what does that say about the value of a disabled life? It's already common to hear able-bodied people saying things like "If I had to use a wheelchair, I'd kill myself." How would a decision that it's OK for a severely disabled person to be killed affect these attitudes?

While making a decision about anything involving healthcare, we must be in a position to give informed consent. That means we must be aware of all the pros and cons of the situation. I don't know enough about the facts of Tony's case to comment on that: but I've heard of previous cases where people requesting death had had no opportunity to live in the community (obviously with appropriate support). Could these people really be giving informed consent?

If assisted suicide and voluntary euthanasia are ever legalised, there will need to be very firm safeguards to make sure people are not being pressurised into requesting them. But research in the places where legalisation has already taken place suggests that this is not impossible.

The key factors for me are community living and social attitudes. We must be free to live as part of the community, and society must accommodate our needs and accept us as equal members of that society. Only then can we make truly informed decisions about whether or not to end our lives.

Sunday, 24 June 2012

MS Research Roundup June 2012 Part 2

This is the second part of the current research roundup. Part 1 is here. In this part, I'll be looking at MS treatments.

The symptoms of MS are caused by damage to the fatty myelin sheath round nerve cells. American researchers found that the immune systems of people with MS were targeting 4 particular lipids (fats). In autopsy, these lipids were depleted in areas of MS damage.

Working with mice with an MS-like illness, they then injected the lipids over several weeks. Disease severity was limited and even reversed. Some tests now show that the mice can take the lipids orally and still improve.

This research is at very early stages, but it holds huge promise for a treatment that can actually repair our damaged myelin.

Omega-3 fatty acids are thought to be helpful for many conditions, but not much work has been done on how they work. American scientists fed three types of fatty acid to mouse macrophages, which they stored as phospholipids. The scientists then stimulated the cells to produce inflammatory responses.They found that Omega-3 inhibited an enzyme called cyclooxygenase (COX), which produces the prostaglandin hormones that spark inflammation.

Inflammation is part of the process of damage to nerve cells that leads to MS symptoms. This research is a big clue as to what could be happening inside the cells, and how Omega-3 oils could possibly help.

Now an exciting stem cell study. An American research group isolated hepatocyte growth factor from mouse mesenchymal stem cells. When they injected this into animals with an MS-like condition, inflammation reduced, neural cells grew, and the myelin sheath regrew over lesions caused by the disease.

Previous work by these researchers has led to a clinical trial where MS patients are being injected with their own stem cells. Now it looks like they may have found the important element for recovery.Watch this space!

Canadian researchers gave injections of either the MS drug interferon beta-1a or a placebo to people who had had signs of possible MS. After 3 years, those who had been on interferon beta-1a were less likely to have progressed to clinically definite MS. This confirms the importance of starting treatment as early as possible.

An oral drug, ONO-4641, is being trialled in the USA.  The investigators have found that after 6 months, those on the drug had a reduced number of brain lesions. The medication does have possible side effects, including short-term heart problems, raised liver enzymes, and lowered levels of lymphocytes, an immune system component. The drug does sound promising though, for those unaffected.

Most clinical trials for MS drugs are with people who have relapsing-remitting MS: perhaps natural, since that's the largest group of people with MS. What follows, though, is that in due course the treatments are only approved for use in RRMS, because that's the only group where there's evidence.

So it's good to see a (small) study, of a drug called MIS416, in secondary progressive MS. Although a far bigger study is needed, most of the patients in this trial saw some relief of their symptoms after only 12 weeks. I look forward to seeing further results on this drug.

Finally, some good news for those of us with MS: it seems we may be less likely than average to have heart disease. An American researcher analysed the reasons people with MS had been in hospital, and compared them with people without MS discharged from hospital. The people with MS were less likely to have had heart attacks.

To be honest, I'm not entirely convinced by this. The people with MS were (on average) younger than the others in the analysis, so would be less likely to have cardiovascular problems. And it doesn't seem to take account of the additional risk for people with MS of being hospitalised for infections.

But hey, I'll take all the good news I can!

That's it for this research roundup. See you next time?

Saturday, 23 June 2012

MS Research Roundup June 2012 Part 1

Lots of interesting research to report again this time. It would be a very (very) long post if I did everything together, so I'm going to split it into two. This post will be about risk factors for MS and possible causes, and the second post (to follow shortly) will focus on treatments.

We know that more women than men have MS, and the proportion is increasing. Greek researchers compared the proportions in people living in urban and rural areas in Crete. They found that in rural areas there was less risk of MS generally, and the women:men proportion hadn't risen as it had in the towns.

This is an interesting finding. The researchers found that the urban women were more likely to smoke, drink pasteurised milk, use contraceptives, and various other factors. But so many things could possibly be involved - environmental pollution is one that springs to mind. More research needed!

Research is showing that Vitamin D is linked with a huge number of conditions, including MS. Now it seems it could also be associated with some cases where MS runs in families. British and Canadian researchers have identified a rare gene variant in these families, called CYP27B. People who inherit two copies of this gene develop a genetic form of rickets, a condition caused by vitamin D deficiency. One copy leads to lower than normal levels of vitamin D.

Out of over 3000 unaffected parents of people with MS, 35 carried the gene. In all 35 cases, the person with MS had inherited the gene. The odds against this happening by chance were enormous.

Not only does this finding go some way to explaining how MS can run in families, it also adds to the growing weight of evidence that vitamin D levels and MS are very closely linked.

We also know already that there are links between previous exposure to the Epstein-Barr virus (EBV), which causes glandular fever (mononucleosis), and the risk of developing MS. Spanish researchers discovered that naturally  lower levels of vitamin D in winter were linked with lower levels of an immune system component called TLR7. This controls the immune system response to viruses.

The researchers drew no conclusions about the impact of all this on other conditions: but could this be one piece in the puzzle of how the different MS risk factors are linked?

Several projects relating to the CCSVI theory have reported recently. First, two proof of concept studies from the USA, which examined people with MS, people with other conditions, and healthy controls using the Zamboni protocol, using ultrasound and MRV. They found that only a small proportion of people with MS had the venous constrictions said to be characteristic of CCSVI: the proportion for both people with other conditions and healthy people was similar. These studies showed no evidence that narrowed veins are linked with MS.

The European Society of neurosonology and cerebral hemodynamics examined the five criteria for diagnosing CCSVI in the Zamboni ultrasound protocol, along with the studies from which they were derived and the main studies looking at cerebrospinal drainage. Their view is that the criteria are questionable: one is based on data collected in other contexts, two have never been validated, one is technically incorrect, and two are subject to so many external influnces that it's difficult to state whether any "differences" are part of a disease or just normal variation.

As a result of these concerns, the Society strongly discourages venoplasty and/or stenting for CCSVI.

A small study in Canada followed 30 people before and after venoplasty for CCSVI. The researchers found no difference between the patients who had been treated and 10 who had not. Any initial benefits reported tailed off, particularly after about 3 months. By a year, several people's veins had reblocked, but their function was no different from those whose veins had not reblocked.

And a group of Italian reseachers carried out a meta-analysis. They critically analysed the proposed biological basis for CCSVI and reviewed all published studies on CCSVI and its ultrasound methodology. They found no supportive scientific evidence for any part of the theory that CCSVI is linked with MS. They feel that CCSVI may be a stand-alone condition, which should be investigated in its own right - but it's not linked to MS.

People have called me anti-CCSVI. That's not accurate - or wasn't. When I first heard about the idea I was interested. Who wouldn't be? I'd love a cure for my MS. But I knew really rigorous research was needed, to see if Zamboni's results could be repeated. As time has gone on, it's become increasingly apparent that the theory just doesn't hold water. If people want to have their veins Dyno-Rodded, well I suppose that's up to them. But I don't want scarce NHS funds paying for it.

On that (rather controversial) note I'll end Part 1 of this roundup. I'll try to do Part 2, dealing with treatments, tomorrow.

Tuesday, 12 June 2012

Spoon overdrafts and the #WCA

It's difficult. I'd love to blog more. I'd love to do so many other things more too! Go out with friends, go shopping, go on holiday, keep on with my voluntary work, hold down a job...

But I'm a spoonie. I'm dreadfully, cripplingly fatigued because of long-term illness - in my case multiple sclerosis. And not only am I short on energy in the first place, but it takes me ages to recover after doing anything.

This weekend is an example. My beautiful, much loved cat Bing died on Friday. It was very, very stressful. Then on Sunday I drove to Oxford for lunch. Before I took ill, I wouldn't have thought twice about driving 60 miles each way for lunch. Now, it's an expedition of Amazonian proportions.

Today is Tuesday. I've not been out of my PJs since Sunday night. I really need to go into town to the bank, but my body's having none of it. It is, in fact, my spoon overdraft that's stopping me dealing with my financial one until I've got that blasted spoon level back up again.

And that's just one of the many problems with the Work Capability Assessment, which decides whether - and at what rate - people should get Employment and Support Allowance (ESA). It asks nothing at all about fatigue. It asks whether you can do a task once, but not whether you can do it repeatedly. It doesn't ask how your ability to work is affected by stress. ("Sorry, Mr. Employer, I can't come in this week. I'm tired cos my cat died.")

It's no wonder that so many people and organisations, including GPs, have denounced the WCA as inadequate. Staff members of ATOS, the company which carries out the assessments, have expressed concerns that not enough time is allowed for each appointment, for what are often complex cases with multiple comorbidities.

Karen Sherlock had multiple comorbidities - basically a lot of bad shit going on - but in her WCA she was put into the "work-related activity" group. That means they thought she'd be able to do some work, eventually.

Well, she couldn't. After a year's frantic, terrified gathering of evidence, Karen's appeal was successful, and she was placed in the support group.

And this week, two weeks after that decision, she died.

Wouldn't it be a wonderful memorial to Karen if this bluntest of blunt instruments were to be consigned to the history books forever? Let's continue to do åll we can, for Karen and its other victims.

Friday, 18 May 2012

The MS Trust hits the airwaves!

The excellent MS Trust has been selected to give a Radio 4 appeal this Sunday. As well as bringing in much-needed donations, the appeal will raise awareness of the charity, letting people with MS, their friends and family know about the support available to them. Money raised will be going to help fund the Information Service, which is available free to anyone with a question about MS.

The appeal will be broadcast on Sunday at 07.55 and 21.26, and again the following Thursday at 15.27. Full details are here.

Please share this information, so that the appeal gets a really good audience! Please also listen, and consider donating if you're able to.

And if that doesn't grab your imagination, have a virtual stroll round the Secret Art Show: small pieces of art, some by international artists, all sold anonymously at the same price. You only  discover who yout piece is by when you receive it.

It's all as exciting as Mr Exciting, the Mayor of Exciting Town!

Tuesday, 8 May 2012

The Spoonie Creation: a parody

The Spoonie Creation
1. In the beginning God created the heaven and the earth.

2. And the earth was without form, and void; and darkness was upon the face of the deep. And the Spirit of God moved upon the face of the waters. But he did not realise that the Devil was chasing him, seeking mischief to perform.

3. And God said, Let there be light: and there was light.

4. And God saw the light, that it was good: and God divided the light from the darkness.

5. And God called the light Day, and the darkness he called Night. And the Devil said: Day, Night? Wait till I come up with Spoonies, for they will either sleep too much or not at all. And the evening and the morning were the first day.

6. And God said, Let there be a firmament in the midst of the waters, and let it divide the waters from the waters.

7. And God made the firmament, and divided the waters which were under the firmament from the waters which were above the firmament: and it was so.

8. And God called the firmament Heaven. And the evening and the morning were the second day.

 9. And God said, Let the waters under the heaven be gathered together unto one place, and let the dry land appear: and it was so. And the Devil said, Ah, that'll be good for Spoonies to fall onto. Nice and hard.

10. And God called the dry land Earth; and the gathering together of the waters called he Seas: and God saw that it was good. And the Devil said: But let's have some more fun with the Spoonies, and make the dry land sometimes like unto the waters of the sea, raging even as a tempest, but let not the Spoonies know from one hour to the next which it shall be, and verily our mirth shall be great.*

11. And God said, Let the earth bring forth grass, the herb yielding seed, and the fruit tree yielding fruit after his kind, whose seed is in itself, upon the earth: and it was so.

12. And the earth brought forth grass, and herb yielding seed after his kind, and the tree yielding fruit, whose seed was in itself, after his kind: and God saw that it was good.

13. And the evening and the morning were the third day.

14. And God said, Let there be lights in the firmament of the heaven to divide the day from the night; and let them be for signs, and for seasons, and for days, and years:

15. and let them be for lights in the firmament of the heaven to give light upon the earth: and it was so.

16. And God made two great lights; the greater light to rule the day, and the lesser light to rule the night: he made the stars also.

17. And God set them in the firmament of the heaven to give light upon the earth,

18. and to rule over the day and over the night, and to divide the light from the darkness: and God saw that it was good.

19. And the evening and the morning were the fourth day.

20. And God said, Let the waters bring forth abundantly the moving creature that hath life, and fowl that may fly above the earth in the open firmament of heaven. And the Devil said Foul? That'll be the Conservatives.

21. And God created great whales, and every living creature that moveth, which the waters brought forth abundantly, after their kind, and every winged fowl after his kind: and God saw that it was good. And the Devil said, I see,they have to be able to move. That'll count out some of these Spoonies I have planned.

22. And God blessed them, saying, Be fruitful, and multiply, and fill the waters in the seas, and let fowl multiply in the earth. And the Devil did ensure that all politicians multiplied.

23. And the evening and the morning were the fifth day.

24. And God said, Let the earth bring forth the living creature after his kind, cattle, and creeping thing, and beast of the earth after his kind: and it was so.

25. And God made the beast of the earth after his kind, and cattle after their kind, and every thing that creepeth upon the earth after his kind: and God saw that it was good. And the Devil said, Let the things that creepeth upon the earth be named The Coalition.

26. And God said, Let us make man in our image, after our likeness: and let them have dominion over the fish of the sea, and over the fowl of the air, and over the cattle, and over all the earth, and over every creeping thing that creepeth upon the earth.

27. So God created man in his own image, in the image of God created he him; male and female created he them .And the Devil created Spoonies, who were in the image of God and looked so well but had bits that did not work properly. And the Spoonies had dominion over nothing.

28. And God blessed them, and God said unto them, Be fruitful, and multiply, and replenish the earth, and subdue it: and have dominion over the fish of the sea, and over the fowl of the air, and over every living thing that moveth upon the earth. And the Devil said, Apart from Spoonies, who are clearly not interested in being fruitful and multiplying, and shall be the lowest of the low.

29. And God said, Behold, I have given you every herb bearing seed, which is upon the face of all the earth, and every tree, in the which is the fruit of a tree yielding seed; to you it shall be for meat. And lo, certain of the Spoonies did say, Herb? Where?

30. And to every beast of the earth, and to every fowl of the air, and to every thing that creepeth upon the earth, wherein there is life, I have given every green herb for meat: and it was so. And the Devil suggested the Welfare Reform Bill and the NHS Bill to the creeping things that were the Coalition.

31. And God saw every thing that he had made, and, behold, it was very good. And the Devil also rejoiced in that which he had made. And the evening and the morning were the sixth day.

32. And on the seventh day Spoonie Jebus necked some Oramorph and had a nap to build up his strength. For verily, there was a hell of a mess to sort out.

*Devil section by Meg Morrigan

Sunday, 6 May 2012

Taking the piss

So what would make you want to have a tube shoved up your bahookie and have someone give injections to your bladder from the inside? There's some people would pay good money for that I know, but it's not really to my taste.

Well, it was the latest treatment for my bladder problems.For a long time now, I've had frequency (needing to go all the time) and urgency (once I need to go, I need to go NOW.) I've also had regular UTIs. Last year this reached ridiculous levels. When I stopped antibiotics for one infection, I would have about one blissful bacterium-free week, before succumbing again.

All this was down to my detrusor muscle, the muscle that contracts when you're weeing to squeeze the wee out. I have overactive bladder as a symptom of MS, where the muscle reacts on a hair-trigger: it sends the "I'm full" signal to the brain well before that's actually the case; it responds to external stimuli like running water or opening the front door; and its contractions cause stress and urge incontinence.

So what could be done? Well, obviously, antibiotics for the infections: I worked my way through a wide range, collecting allergies and interesting side-effects along the way (mostly hallucinations - the gazelle giving me a jar of hand cream was my favourite).

I took part in a drug trial, self-injecting twice a week. I knew when I was on the drug rather than the placebo because I got skin reactions. It really, really helped. But then the trial ended, and I was back to the standard medication.

The standard medication is anticholinergic drugs, which help to stop the detrusor muscle from over-reacting. They help, a little, but not much. I still have a lot of problems.

So it was proposed that I should have botox. No, not up there. Down there. The idea is to partially paralyse the detrusor muscle so that it's not so twitchy. And the way they access it is through what's normally the exit.

In due course, therefore, I found myself on an operating table with my legs up in stirrups, with a charming consultant in there at the business end shoving a tube with a camera attached up where only one man has been before (the urologist who did my previous cystoscopy). The equipment that let him see what was going on also had a small screen that I could see (if I wanted, which being me of course I did), and he was good enough to give me a guided tour of my own bladder - this is the top, this is where the left kidney opens into the bladder etc etc.

The actual injections...weren't nice. But hey, I've got MS, I've experienced a lot worse. If you can imagine someone pinching a bit of your insides, FROM the inside, really hard, that's kind of what each one is like.

But it was soon over, and there was no pain afterwards. And the very next morning, I woke up, needing the loo, yes, but not desperate - I'd forgotten what that felt like! Generally the effects have been wonderful. I can hold on for absolute hours, as opposed to my previous average of about 40 seconds!

Predictably enough, with my history, I got an infection, but that was soon sorted out with antibiotics. I'm still on a low dose, to protect me against any more. The ongoing side-effect is that I've kind of gone the opposite way to where I was before. I now can't wee when I want to! Well, I can, but it's hard work, y'know? Seems the injections have worked a little too well. Hopefully that'll settle down in time. In the meantime it's still preferable to my previous problems.

So all in all a positive experience, and I'd definitely recommend botox if you have overactive bladder and the standard meds aren't helping you. I'll have to have it repeated every 6-9 months, but that's small price to pay for the benefits.

And, of course, for having the smoother, more youthful bladder I've always dreamed of...

Tuesday, 1 May 2012

#BADD Dead Happy, Derek, and disablism

Recently employees of a Cambridge clothing company, Dead Happy, thought up a promotional scheme. They wanted fans of the company to put stickers, preferably rude, onto the back of mobility scooters, then take photos to upload onto Facebook.

I should stress that this wasn't official company policy: as soon as the boss of the company found out about it, he removed the Facebook posts in question. The police have taken the incident very seriously, and at the last report, were speaking to those concerned.

But it's just a prank, right? What harm can it do?

I haven't blogged so far about Ricky Gervais's pilot show Derek, partly because I wasn't sure myself what my feelings were about it. Was I uncomfortable about the idea because I've never really been a fan of Gervais? Because I was unconvinced by his conversion after "mong-gate" last year? Apparently he's been using the word "mong" in his stage act for several years, followed by a mock-coy "I'm not supposed to say that, am I?", so his protestations thaat he didn't know the word was offensive ring hollow.

Gervais insisted that Derek isn't disabled, saying that:
Derek is a fictional character and is defined by his creator. Me. If I say I don't mean him to be disabled then that’s it. A fictional doctor can't come along and prove me wrong.
Well, that all sounds fine. Except that to me, and the huge majority of people I know who watched the programme, Derek very clearly was disabled, either with mild learning difficulties or (some people suggested) on the autistic spectrum. The people I'm talking about are people with disabilities themselves, or parents of children with autism. Y'know, people who actually know what they're talking about when it comes to disability, unlike Ricky Gervais - remember he claimed not to know that "mong" was an offensive term for people with Down's syndrome?

What effect did Gervais want Derek to produce in the viewer? Well the programme was billed as a "comedy drama". Looking at the hashtag #Derek on Twitter during the programme, most mainstream viewers seemed to find it very funny - but they were laughing at Derek, not with him. A minority found the programme sad, because of Derek's condition.

Afterwards, Ricky Gervais tweeted:
One review of Derek said they weren't sure if they were meant to laugh or cry. I'd suggest that whatever happened was the correct response
Some writers can produce work that makes the viewer both laugh and cry. Is Gervais one such? I would suggest not on this evidence, because he encourages people to laugh at his characters and sympathise with them, rather than laughing with and empathising with them.

But what harm can a TV programme do?

Well, a couple of days after the programme was broadcast, I was at my local shops. A bunch of kids yelled "Oi, Derek!" at me. I'm female, I don't have learning difficulties, and I use a wheelchair. The only similarity I can think of between me and Derek is...we're both disabled. For these kids at least, the programme was making disabled people in general into objects of derision and targets for abuse.

And there's evidence that as disablist speech becomes more common, so does disablist hate crime. A report at the end of 2011 showed that hate crime had risen by more than 75% in one year. Disabled people report being spat at, having faeces pushed through their letterboxes, and even being tipped out of their wheelchairs or physically attacked.

In just one terrible example, Fiona Pilkington killed her disabled daughter then committed suicide after years of constant abuse from local youths. In at least one case, a man who called the police several times to report abuse was recorded as a nuisance caller.

The reasons for this rise are many. One is the prevailing "anti-scrounger" rhetoric from the Government and the red-tops,which has the tendency to paint all disabled people (working or not) as thieves, stealing undeserved monies from the apocryphal "hard-working taxpayer".

But another has to be the dehumanisation of disabled people. If we're suitable objects for laughter - or pity - than what does it matter if you take it a little further? We're not like them, after all. We're different. But somehow, all the same: all disabled.

If you're the victim of disability hate crime (or any other kind), please report it. You'll get the support you need, the offenders will hopefully be dealt with, and it'll send out a message to the wider community that this is just not acceptable.

And who knows? Maybe, just maybe, one day Ricky Gervais will work out that the way he takes the mickey out of the disabled really isn't funny!

This is my post for Blogging Against Disablism Day 2012. Follow the link to the Goldfish's always excellent blog for lots more blog posts on the general topic of disablism.

Monday, 30 April 2012

Disability choons

Today, the time restrictions on contributory ESA come into force. I could have blogged about that. But I thought instead I'd stay in my happy place, and give you some music that could (almost) have been written for us disabled people!

I Can't Stand Up For Falling Down - Elvis Costello

Head Over Heels - Tears For Fears (suggested by ValleysBloke)

Trip Stumble and Fall - Stephen Bruton

Wheel's on Fire - Julie Driscoll

Dizzy - Vic Reeves and the Wonderstuff

Pins and Needles - Billy Talent (suggested by @spa280y)

Comfortably Numb - Pink Floyd (suggested by @SarahRansley)

Spasticus Autisticus - Ian Dury and the Blockheads


I'd Rather Go Blind - Etta James (suggested by @katebielby)

Darkness Descends - Laura Marling (suggested by @ValleysBloke)

Crazy - Gnarls Barclay (suggested by @KateBielby)

Borderline - Madonna (suggested by @living_as_if)

Led Zeppelin - Black Dog (suggested by @ValleysBloke)

Can't Get You Out Of My Head - Kylie Minogue (suggested by @spa280y)

But whatever life and the DWP throw at us, we've got to think like Chumbawumba, in I Get Knocked Down (But I Get Up Again) (suggested by @spa280y)