As I’ve said before here, in the context of exporting democracy down the barrel of a gun to Iraq and other places where it has no history, western parliamentary democracy relies on one of two compromises: either one party gets an inflated majority, allowing it to control Parliament and thus legislate more-or-less at will (which is the norm in the UK), or a group of parties get together, make deals, and exclude other parties. This is more-or-less accepted in most western countries. In countries with major religious or ethnic fault-lines, it could be a recipe for civil war. In the vast majority of cases where a major party has to find a partner to form a parliamentary majority, they choose a minor party over the other major one (Germany being a well-known exception, where there have been Grand Coalitions of the Christian and Social Democrats including very recently, although coalitions of one of those two parties with the Free Democrats, a small third party, are more common). In some countries, the balance of power is held by an extremist party, as has been seen in Israel.

Some countries have a constitution to protect citizens from the excesses of politicians. Some (like the UK) don’t. However, these laws always focus on the right to freedom of religion, speech and assembly and against detention beyond what is necessary to uphold law and order. They do not protect against unjust or irrational laws. The USA continued to uphold slavery for decades after its well-known Amendments were passed. Its judges upheld segregation for nearly a century after that was abolished. Its disabled citizens are not granted the right to an independent life, and freedom from effective incarceration or forced sterilisation, by their constitution. It did not bring about the abolition of institutional dumps for disabled children. This was the achievement of disability campaigners, and the worst institutions persisted well into the last quarter of the 20th century, much as they did in the UK which has no written constitution.

For a disabled person, unless he or she is from a very rich family, the right to the same freedom as everyone else is dependent on decent welfare provision, because their ability to work is diminished, either by the limitations of their disability, or their increased vulnerability to medical crises, or their inability to physically enter the buildings where there is work. Whether this comes from some kind of private philanthropy or from tax-funded state provision, the ability of a person, including a child, to stay in their home and receive a decent education requires support. Without it, the strain on a family is often too great: the burden of lifting a heavy disabled child on a sole female caregiver, for example, or the necessity of one wage earner giving up their job, or the financial burden of wheelchairs, extra clothes, equipment, modification of the home and so on. With adequate support, most disability can be managed by the affected person or their family. Without it, people will not be able to stay in their homes, and people will be less likely to take on a disabled partner, and more likely to take “advantage” of genetic tests to screen out disabled children. People are more likely to relinquish their duty of care to disabled relatives (including children) if the support is not there.

I used to be a republican. These days, I am an agnostic about what type of democracy I want the UK, as it currently is, to be. Republics often tell their citizens myths and lies about their origins, and how they established a state of the people and threw off the yoke of the monarchy, or the church, or a foreign invader — it was never about a bunch of slave-driving tobacco farmers who didn’t want to pay their taxes, or a merchant class who wanted power for themselves. In the UK, we tend to wear our patriotism lightly and unless you go into parliament or the Armed Forces, nobody ever asks you to swear allegiance to the Queen. I’ve never been asked to in 35 years. Yet, in many republics, they insist that you do the equivalent, and sing the national anthem, every morning. In some, they even insist that you recite an ethnically-specific slogan, regardless of your actual ethnicity (Turkey, in particular). As a Muslim, I have found that, in terms of day-to-day practice of Islam (including the wearing of religiously-mandated clothing in public places), the UK protects its Muslim citizens’ freedom to a greater extent than the republics on the continent.

Therefore, I support the initiative to petition for a refusal of Royal Assent for this bill, have signed it myself and urge anyone concerned for the welfare of disabled citizens to sign it. While not totally abolishing state support for disabled people’s independence, it will revoke vital supports for categories of disabled people who do not fulfil various tick-box criteria, such as being totally unable to walk (some people can walk a bit, at the risk of causing themselves injury or making themselves more ill). It is not even likely to save public money, as the government have previously admitted. It is not going to be temporary, as the Labour party have not pledged to reverse it if they regain power at the next election, and is not something anyone expected of the Liberal Democrats, who attracted votes until the last election precisely because they were not Tories and were not the pro-war New Labour (for that matter, it was not even in the Conservatives’ manifesto). This coalition’s mandate to govern is not unconditional, as it is the result of a back-room deal that nobody else got a vote on. If the monarchy is one check against this stitch-up, we should not have qualms about trying to use it.

(Please note: please leave a sensible message if you leave one at all. Telling the Queen to get a job or threatening her with the guillotine are not helpful to our cause.)

Susannah was (as far as we can tell, and this is the impression given in the written articles also) trying to support Mike and Tiffany with their son Toby, who at 3 1/2 years old was still in nappies, unable to speak and aggressive in his behaviour. The social workers believed that intervention was urgent as there was only a few months left before the window for remedying these things closed. The boy was being cared for by two obviously inadequate parents who had failed to obtain a bed for him and whose house had dog’s muck on the floor. The father, who obviously had learning difficulties of some kind, was hostile to the social worker from the start, and repeatedly accused her of simply being there to take Toby away, or as he put it, to “wreck” them. There were a number of incidents in which Toby sustained bruises and his parents’ explanations did not convince.

Tiffany was pregnant with another child, and during her pregnancy was hospitalised; the couple agreed that Toby should go into foster care as they did not think he could deal with looking after the boy on his own, but he pulled out at the last minute. The social workers went to court and succeeded in getting him taken into care. After the second baby was born (and promptly removed), Tiffany threw Mike out after a fight, and although the social workers were willing to work with Tiffany to keep her and her two children together, she decides to give them up for adoption.

Some might say that Tiffany made that decision because she felt beaten down by the constant pressure, but having watched the programme, it appeared that she was enjoying the new-found freedom caused by Mike not being there — she said that she had been controlled by others all her life, and was finally able to be herself. Her depression was also being treated for the first time. It’s possible that she wanted all trace of Mike out of her life, and that included his children. The programme ended by saying her children would be adopted separately due to Toby’s special needs, that Tiffany would not see them again as children, and that Mike had made no further contact.

I read a review of the programme on the Telegraph’s website (the picture of Tiffany is more flattering than anything you see of her in the programme), and one of the commenters (who signed himself “That Guy”) asked “Come on social workers, and their apologists, tell us why the children can’t see their natural mother, who didn’t intentionally harm them, during their childhood?”. The answer is that this is beyond the social workers’ control: it is how the adoption system works and always has done, because it dates back to a time when adoption was a means of getting rid of illegitimate children by pretending that they were really someone else’s. In other countries, a type of open adoption exists where the birth parents still have some degree of access, but that is not true here. There are other options available, such as special guardianship (where children are looked after by specially cleared family members or friends), but that probably was not an option for Tiffany anyway.

What astounded me was the refusal of some commenters to accept that Mike’s (in particular) obvious learning difficulties and inability to see or discuss things rationally were a major obstacle to getting Toby’s developmental needs seen to. One of the commenters compared Toby’s surroundings to his own upbringing in a small, crowded house in the 1950s, as if basic and poor was the same thing as filthy and unsanitary (I am sure they didn’t allow people or dogs to defecate on their floor). During a contact visit, he barely spoke to his son, preferring to absorb himself in playing with the children’s toys separately from Toby (however, the presence of the social worker looking at them and taking notes cannot have helped). He looked child-like, apart from his beard, and acted the part (he also revealed that he had lost a number of children to miscarriage and stillbirth, which may reflect a genetic disorder of some kind). It’s possible that his problems were not all of his own making, but it’s also true that he was in no fit state to raise Toby, much less to attempt to remedy his pressing developmental needs.

It is not the first time I have seen someone on the internet brazenly deny the obvious failings of a parent in such a documentary. Last December, the BBC broadcast a Panorama programme about the difficulties of getting older children adopted out of care, and a recurring feature was mothers with learning difficulties or low intelligence who had made repeated bad life choices which put their children in danger. The mothers’ learning issues were sometimes plainly obvious from the way they spoke, and yet Christopher Booker, in his column on the Telegraph website, said that these issues were “scarcely evident when she was allowed half an hour’s ‘contact’ and they all rushed into her arms”. Yet they were plainly obvious to me, and no doubt to the social workers as well. I’ve written about Christopher Booker briefly here in the past, but for those not familiar with his writings, as well as complaining endlessly about children being seized from loving families and held hostage by a secretive, unaccountable family court system that always sides with the social workers, also insists that global warming is a myth and that asbestos is nowhere near as dangerous as is commonly believed. George Monbiot addressed the failings of his writings on these two aspects here and here, but does not really address the fact that Booker is obsessed with the financial cost of everything — he published a book called The Real Global Warming Disaster, which purports to expose “how in the 1980s a handful of scientists came to believe that mankind faced catastrophe from runaway global warming, and how today this has persuaded politicians to land us with what promises to be the biggest bill in history”. It’s always the money: when social services are protecting kids (or wrongfully removing them), it’s money; when we are trying to reduce the amount of fossil fuels we burn, it’s money; when we strip out asbestos, it’s money. In his earlier book, Scared to Death (co-written with Richard North), he mentioned a number of the child protection scandals of the 1980s and in all but one of them, he mentioned the cost to the taxpayer. Never mind the fact that social workers avoid taking children into care, and prefer family members to care for children wherever possible, precisely because foster care (let alone institutional care, where it is even available) is expensive.

I’m often sympathetic to people who have had their children taken by social services, and I’m well aware that they make mistakes and that they are often not fixed as quickly as they should be (although often, the social workers are acting on instruction from doctors who fail to spot conditions like brittle-bone disease and assume a baby’s injuries are inflicted by their parents). However, when I see such ridiculous nonsense posted as comments on articles on this subject from people who are blind to obvious danger to children, my sympathy for them just drops like a stone. If anything, it’s rather a shame that poor Toby wasn’t found, and rescued from his miserable surroundings, much earlier.

I’ve heard suggestions that Steve must have learning difficulties of his own, otherwise he would not, and should not, have been allowed to marry or have a sexual relationship with Trish because she would be deemed a “vulnerable adult”. Having seen the interviews with him, I do not know where anyone gets this impression — he has a job in IT and seems well aware of the challenges facing the family and his own responsibility in caring for a wife who cannot work. Trish was very frightened of having her baby taken away and was shown asking the midwives if she’d be allowed to keep the baby (a girl named Elizabeth); they told her that there was no reason why she shouldn’t. She was worried about this after reading about this happening to another woman with learning difficulties in the paper (this may have been Kerry Robertson/McDougall). In the event, according to a post by Steve on the show’s Facebook page, the midwives did inform social services (as was their duty), but further inquiries revealed that they were satisfied that Trish was competent, or at least well-supported, and were not interested.

As for the question of Steve and Trish’s marriage, nobody can tell how severely mentally impaired Trish is simply by seeing her on TV. It could have been prevented at the outset had anyone who worked with them thought Trish could not make valid vows, and they would hardly have been allowed IVF (several times) if she would have been considered an inevitably unfit mother. It’s possible that she may be more intelligent than her speech (she clearly has some difficulty with speech due to her injury) indicates, and despite her problems with short-term memory (hence the pictures showing her how to prepare the baby’s bottle), she did eventually learn how to do this without them. She suffered a head injury at 13, and had doubtless learned a fair bit about the world by that time, so it is not the same as someone who had been impaired all their life. She also has some insight into her condition, as we see when she talks of the frustration of not being able to remember things, and on another occasion says she hopes her child has her husband’s brain and not hers, otherwise she would feel very sorry for them (she also remembers how the accident happened).

Those of us who’ve seen them on TV do not know much about Trish’s history other than what they have told us, so we do not know if she progressed at school or took exams at all, or what she has managed to do with her time since the accident or since her marriage. We do know that it was Trish who made the first move in their relationship and Steve admits that she is more confident than he is and does the talking when they are out. Clearly, her cognitive impairment was not judged to be so severe that anyone saw fit to prevent their marriage, and possibly it is not as severe as her behaviour (at a very emotional time for both of them) might suggest. Who are we to judge?

There really are far, far too many people sponging off the taxpayer right now with their fake or exaggerated disabilities and they’re one of the reasons we’re in the financial mess we’re in. … Every time the disability lobby squeals for more another few jobs are lost, another few basis points are lost from GDP growth. But these people don’t care; they know better than that: the government owns a magic money tree and its ability to distribute the fruits thereof is boundless.

The notion of ME being ‘fashionable’ goes back a long way — at least to 1992, when a paediatrician outside Tunbridge Wells diagnosed a sick and frightened 14-year-old girl named Lynn Gilderdale (left) with it and told her that she had a fashionable illness. As I think I’ve proven on here over and again, ME is not a “fake disability” which “makes you a bit peaky”, it’s a serious illness that can lead to very severe physical disability, ongoing sickness and severe pain. There is too much evidence of physical pathologies, including demonstrable damage to the central nervous system and other systems in the body, to entertain any theory about it being psychological either in origin or in continuation. If you develop severe ME, as about a quarter of sufferers do (like the already mentioned Miss Gilderdale), you might not be able to use your special parking space as you might well be bedridden. You might have to settle for a bedpan rather than a nice big disabled loo. You might not even be able to speak, which for the rest of us would be a good thing if it happened to him (as well as Ricky Gervais, Frankie Boyle and all the other miserable excuses for comedians who make a living mocking disabled people). Most of them would be only too happy to work (or to get an education, or to do the things the rest of us call fun). As someone I know who has severe ME said in reaction to Liddle’s rant, “if Rod Liddle really wants ME, he can have mine”.

The statistics have already been well argued over, and the fraud rate of DLA, by the government’s own statistics, is 0.5%, and the statistics referred to in Liddle’s piece (that 80% of those claiming Incapacity Benefit (78%, actually, as reported in the Mail) — or rather, Employment and Support Allowance as it is now called) are fit for work most likely refers to those found fit for work by ATOS’s test, and many of their decisions are overturned on appeal, so the real figure is probably much less than 80% or even 78%. ATOS has been known to fail people who are undergoing chemotherapy or are otherwise manifestly unfit by using a tick-box assessment, as this investigation showed. The Mail’s report at least acknowledges the criticisms of high appeal success rates and of seriously unwell people being wrongly refused; Liddle simply repeats the rounded-up 80% figure as fact.

Liddle concludes by claiming that “the people fraudulently claiming sickness benefits are doing a disservice to those who really deserve it: The people who really become disabled or ill. It has become easier to claim these benefits, partly as a consequence of the disablement (sic) charities who, out of their own self-interest, insist that an ever-greater proportion of the population is disabled”. First, over-emphasising the issue of fraud, for example by misrepresenting the number of people turned down by a government test (regardless of future appeal results) as the number of people fraudulently claiming the benefit, is an easy way to make sure that many of those who do really deserve it will not get it, because it will make disability more difficult to prove but this does not necessarily mean it is not there. Second, people tend to think that “real” disabilities are the very visible ones everyone knows about: blindness, paralysis and cerebral palsy, for example. Other conditions may not affect someone getting to the test on their own, but might result in them being unable to do pretty much anything for the rest of the week, or they might still hinder that person working (or finding employment) in a way the test might not allow for. These include employers’ prejudices, for example, particularly if the disability affects someone’s appearance or manner of speaking.

James Delingpole’s article puts the “disability lobby” among a number of causes which allow for taxpayers’ money to be siphoned off to “hard-left organisations like Friends Of The Earth and the New Economics Foundation” so that they “can campaign for more encroachment in our lives by the overweening state”. My own observation of the disability campaign is that it is non-partisan, and while its current campaign is against attacks on disability benefits by a Conservative-led government, it responded warmly when the mayor of London, Boris Johnson, supported their position (as with senior Tories in the House of Lords more recently). The campaign is about empowering disabled people to live independent lives as much as possible, not funding large charities to care for them on an institutional basis, as some of them once did. None of those I’ve worked with are charity bosses on “fat cat” salaries; they are severely disabled people who have worked very hard without remuneration, often at great risk to their own health (as the picture accompanying this paragraph demonstrates; it is of Sue Marsh, a co-author of the recent Spartacus Report, who was hospitalised with complications of her Crohn’s disease late last month).

He also quotes a figure which traces back to the Family Resources Survey, namely that 11 million people in the UK — “that’s a quarter of the adult population” — qualified as disabled. However, this figure was for the whole population and included those of pensionable age; the figure for the working age population was half that. The problem is that these figures do not estimate those who are entitled to claim benefits, let alone those who actually do — they include anyone who has anything that could be termed a disability. For example, 1.5 million people reported incontinence, which does not always occur alongside other physical disability and need not impair someone’s ability to work. (You can see the DWP’s breakdown of these statistics in this PDF, and you might notice the substantial “Other” section in “Disability prevalence disaggregated by impairment” — this would include sight impairments, for example.)

It is, in any case, not “fake disabled” people who have “crippled the economy”, but bankers and others in the financial sector who bankrupted several large banks with their irresponsible lending practices, and the rich and large corporations who find ways of getting out of paying their taxes while expecting the rest of us to pay for at least some of their healthcare and other public services. The small number of “fake disabled” are an unfortunate consequence of making sure that real disabled people are not forced into beggary, indignity and early deaths; we need some means of detecting them but not at the expense of making sure those who need the support, get it. As for ME being fashionable, I’ll believe that when I see a woman in lilac pyjamas with a nasogastric tube and dark glasses being carried on a stretcher down a catwalk in Milan. Until then, that’s just a bad joke.

What stuck out for me was the bit where Maria Miller revealed that she did not expect the level of public spending currently required by Disability Living Allowance to be reduced by the purported 20% in the next four years; they instead intend to maintain it at last year’s levels, i.e. to check the growth of the cost of supporting disabled people, not to drastically reduce it. Given that many people have looked at the new criteria and found that they will no longer be eligible, despite considerable mobility needs: for example, Lisa Egan, who has Osteogenesis Imperfecta (which makes it easy for her to injure herself by doing normal things like walking) and uses a wheelchair, found that under the draft proposals, she would not be eligible for the new benefit at all because she can “mobilise” using a wheelchair. As many people with disabilities use their DLA to actually buy a wheelchair (as well as adapt their home), this would presumably exclude paraplegics as well (not quadriplegics, as they would need assistance in washing, cooking and so on).

A change to the entitlement criteria that excludes a number of very obviously physically disabled people, yet would not greatly reduce the cost to the taxpayer, reflects a scheme which is really intended to do two things. The first is to play to the tabloid gallery by contrasting “deserving” recipients (such as blind people, as in the example Lisa mentions) with undeserving ones, such as alcoholics who might need supervision to make sure they do not choke on their own vomit; but it might also weed out a number of people with hidden disabilities that are not tabloid-friendly, and might elicit hostility from ignorant people if they use a disabled parking bay.

The second is simply another opportunity for the British corporate welfare state that has been operating at least the whole of the Blair/Brown government and probably before. In this particular case, public money is going to be redistributed from those who need it — those with disabilities who would use it to enable themselves to go to work, to live in their own homes and generally stay independent and out of a care home — to corporate bigwigs and their (mostly able-bodied) lackeys. To employ (whether directly or through a large contractor) people to carry out repeated assessments on obviously disabled people, let alone those with mental illnesses who may find that the stress worsens their condition (and thus their burden on the NHS), is not exactly a worthwhile reapportionment of public money. The increased burden on the public purse in other areas does not appear to have been considered, such as the likelihood of hospital bed-blocking by disabled people who cannot be discharged as they have no suitable accommodation, as commonly happens today with the elderly.

This debate has also revealed the typically cowardly mentality of the Labour Party, which has refused to commit itself to reintroducing DLA if they regain power at the next election. Their excuse is that they cannot predict what the economy will allow by that time, but we all know that the real reason is their timidity in the face of the Tory press at any election time. There has been a series of articles berating the current Labour leadership for capitulating too easily to the Tories’ agenda in the name of seeking “credibility”, such as this one by Mehdi Hasan in the New Statesman which also argues that Labour should use its own terms of reference rather than appeal to Tory sentiments by using Tory imagery. The centre-left group Compass has released a pamphlet attacking “white flag Labour”, in which economist Howard Reed attacks the “tame surrender to the misguided economic policies currently wreaking havoc on the UK’s economic and social fabric”.

The white flag has, of course, been the rightful symbol of New Labour since the mid-1990s, as they invariably show timidity towards the Tory press but also towards foreign (particularly American) aggression, involving the UK in their wars and signing humiliating extradition treaties which offer British citizens no protection. It is difficult to see how they can gain any credibility with progressive voters while they maintain this position; they are more likely to inspire apathy, even among their core vote and especially those who abandoned them for the Lib Dems as they saw Labour as essentially the red Tories: a war-mongering, tabloid-appeasing party. With the predicted collapse of the Lib Dems at the next election, apathy about Labour can only help one of the major parties. They need to get themselves a backbone, pretty quickly.

You can read the transcript on this blog here or you can download it in PDF format here.

I saw two developments which sadly got more significance attached to them than they deserved, in my opinion. One was that the Daily Mail published an article on their RightMinds blog by Sonia Poulton, which was wholly supportive of the report. Many of those on Twitter thought this was a leader column by the Mail itself, or an article which had been published or was going to be; in fact, RightMinds is their version of the Guardian’s Comment is Free site and very little of what appears there also appears in the paper. I looked through the paper today and did not find that article. The same was true of the Mail’s coverage of Boris Johnson’s declaration against the DLA reforms: it wasn’t news enough for the Mail to put it in the paper.

The second was the statement by Dr Clare Gerada, the chair of the Royal College of GPs, on Twitter which was reproduced on Sue Marsh’s blog here. Gerada is married to Prof Simon Wessely, and some have pointed out he has links to various insurance companies and to the DWP itself and may have been involved in drawing up these reforms in the first place. Another concern is that Wessely’s theories are instrumental in fostering disbelief among doctors in certain chronic illnesses, notably ME (myalgic encephalomyelitis), and if it is impossible to get a diagnosis of anything other than a minor psychological problem or “Joe/Josie Bloggs syndrome”, getting DLA will be extremely difficult even if these reforms do not pass. For that matter, other conditions have led to presumptions that the patient is mentally ill despite pathology that can be identified by someone who knows what they are doing (this happened to Kaliya Franklin, one of the major authors of this report). It is not sufficient to support people’s theoretical rights to benefits; doctors themselves need to stop disbelieving clearly ill patients and fobbing them off with psychobabble and referring them for treatments that are proven to be ineffective or harmful.

My main reason for writing this, though, is to explain why disability benefits are not something we can just do away with by saying “the cupboard is bare” or “we can’t afford it”. While Disability Living Allowance was brought in in the early 1990s (the government are saying it is based on an “outdated” understanding of disability, being as it is 15 years old!), the need for such benefits arose as more people with disabilities physical and intellectual and those with mental illnesses were released from long-stay institutions into the community in the 1980s. DLA helps keep people independent, allowing them to live a dignified life in their homes, or with their families, allowing to earn a living (and pay taxes), and to contribute to society in one way or another. It means we do not have to maintain institutions for most of them, which means we save on catering and cleaning, and heating vast buildings, and hiring large numbers of orderlies and nurses. People (or close family members or friends) will clean their own homes, and cook their own food, at their own expense, probably better than a contractor will as they are not trying to drive down costs. Not being in a medical environment (with others who are prone to infections) means less risk of infection, which saves the NHS money. And so on.

Perhaps many people are not aware of the old institutions, maybe because they were often out in the country in secluded grounds, so the only people who really knew about them were those who worked there, or who visited relatives there. Many of the present government are of a younger generation and even they entered politics when the institutions were mostly closed or closing. Many people remember the shenanigans of “care in the community” in the 1990s, which became a euphemism for “not all there” (it’s something we used to say to each other when working at Woolworth’s in the mid-1990s, whenever we had just served a weird customer), but they forget why the places they had come from were shut down (because they kept people out of society for too long, for no good reason). If you have ever been to a poorer country than the UK, you may well have seen a lot of people begging, many of them with limbs missing or deformed. That doesn’t happen in the UK, because people with disabilities get the benefits they need to work, or at least survive without begging.

So, next time you hear a Tory (or Lib Dem) politician tell you “there is no alternative”, remember that there in fact is — wholesale re-institutionalisation. Only, the buildings have been either demolished or sold off, and building new ones will cost an awful lot of money. Caring for people with disabilities or the chronically ill in nursing homes or long-stay hospitals costs more than supporting them to live at home, and is less satisfactory for them as it imposes an institutional lifestyle, even if it does not lead to outright abuse (which it sometimes does). There is, in fact, no way to reduce the disability budget without imposing a lot of extra bureaucracy, a huge institutional care burden, or a lot of suffering (and manifestations such as public beggary) which would prove politically intolerable.

This report tells part of the ongoing story of Ayn van Dyk, who was seized from her home, which she shared with her father and two brothers, after briefly going missing. She has severe autism although academically, she was (at least before being traumatically taken into care from school) close to her age group. The local authorities do not claim that Ayn was in danger from her father, Derek Hoare, but simply that her care was too much for him to manage along with two other children, one of them also autistic. They are still living with him. (Their parents split up some years ago, and she still sees all of the children, and has visited Ayn in care - the article explains why her father has not.)

That Ayn is still in care after all this time is simply inexcusable given that there is no issue of Ayn being in any danger from anyone else in her family. The delay seems to be partly due to Derek Hoare’s refusal to see Ayn while in foster care, which stems from the belief that for him to see her and then leave will cause her distress and harm their long-term relationship. It is also, however, a matter of the authority rushing into a wrong decision and then failing to rectify it promptly. This should surely have been sorted out round a table in July.

This demonstrates why openness is vital in such proceedings: the secrecy which is normal in cases involving children in the UK better helps protect the authorities from embarrassment than children from abuse or danger. It also gives ammunition to columnists like Christopher Booker (who has a low-tax, small-state agenda), who complain endlessly of being unable to report heinous abuses by social workers while — supposedly — happy children from stable families (active in the local Tory party or field sports set) are taken into care and put up for adoption on spurious grounds at (all-important) major cost to the taxpayer. At least the social services in British Columbia will not be able to run and hide as Ayn’s story is well-known around the world.

This morning several news sources reported that a study had been published by BMJ Open (the open-access section of the British Medical Journal’s website) which reported that around 1% of children (that is, 28 out of a sample of 2,855) were missing more than 20% of school over a six-week period due to what they called CFS/ME (Chronic Fatigue Syndrome / Myalgic Encephalomyelitis — interestingly, they do not call it Encephalopathy). Reports included this one from the BBC, this one from the Daily Mail (which gets points for featuring a genuinely sick-looking child, not a model pretending to be a bit tired), this one from the Telegraph, this one from the local Bath Chronicle and this one from the Guardian. The Guardian’s has a case study and the BBC’s report has an interview with Mary-Jane Willows of AYME, and a teenage girl sufferer.

It is, of course, not news that ME is a major cause of absence from schools: a study conducted by Jane Colby (now of the Tymes Trust) and Dr Betty Dowsett, a neurologist who is a major (now sadly retired) expert on ME, reported that the single biggest cause of long-term sickness absence in secondary schools was indeed ME (note: although they use the term ME/CFS in the article, both authors are known for their strong interest in enteroviral ME, not generalised CFS). They estimate the prevalence of the illness as being 70/100,000 among pupils (that is 0.07%) and 500/100,000 among staff (0.5%) — far less than the 1% being alleged in the recent Bath report. Mary-Jane Willows suggested in the BBC’s report that even that figure is likely to be a minimum. Of course, so much of the bad research on “ME/CFS” in recent years has used definitions of the illness which inflate the number of sufferers — usually by a factor of about five. To suggest that 1% of the total adolescent population has ME is simply staggering.

Significantly, the Telegraph found a psychiatrist (Matthew Hotopf), a professor of psychological medicine (Peter White) and a professor of Cognitive behavioural Psychotherapy (Trudie Chalder) to comment on this report, yet nobody involved in biomedical research into ME or who treats ME from a purely physical or neurological standpoint. The report claims that there is “some evidence that particular treatments (graded exercise therapy and cognitive–behavioural therapy) are moderately effective in children, while the recently reported PACE trial provided strong evidence that these treatments are moderately effective in adults”; the BBC quotes the report’s claim that of 23 who were diagnosed with “CFS/ME” through a school clinic, 19 chose to have treatment (CBT or GET) and all saw a substantial improvement. However, there were actually 28 cases identified in the recent study, and it is not suggested that these 23 were part of the Bath sample. Why some of them did not continue using the “CFS” service is not made clear: perhaps they found it made their condition worse.

Some will welcome any publicity for ME that says “yes, ME is a big public health concern after all”, but this contribution is from a group which favours psychological approaches to ME and talk and exercise as a cure. The psychiatrist quoted by the Telegraph, Prof Hotopf, mentioned depression as one of the major causes of fatigue; it is, in fact, one of the conditions that can result in a misdiagnosis of CFS. When the PACE trial was published last year, they did not include the severely affected and the resulting publicity entirely ommitted them from consideration, despite the plethora of reports that GET has in fact made some patients’ conditions worse, sometimes permanently. It underlines the importance of defining ME properly so that treatments such as GET which may benefit some fatigue patients are not tried on people it can seriously harm. It is important that this distinction is clarified in response to this study and the publicity surrounding it.

Yesterday I finally got to see Voices from the Shadows, a documentary about severe ME produced and directed by the same people that produced the book, Lost Voices, (reviewed here) which told stories by a number of people with ME (mostly severe ME). This film, although including pictures that appeared in Lost Voices, concentrated on five people, all but one well-known to the ME community: Lynn Gilderdale, Naomi Whittingham, Linda Crowhurst and Sophia Mirza, as well as a young girl referred to only as “B”, who fell ill aged eight and is still severely affected at age 15. This is the last of four showings of the film, which previously showed in Norwich, at the Mill Valley film festival and at the IACFS/ME conference in September; the mother-and-son team behind it are currently looking at an American distribution prospect before considering a DVD or download release. (Other reviews: CFS Patient Advocate, Jenny K Rowbory’s dad, It’s Only ME …, Thoughts About ME.)

The film is principally about the abuse of ME patients, children and adults, in the medical and social services sectors; it is not a bio-pic of any particular sufferer, nor is it really about what it is like to have ME. Although a video appeal by Giles Meehan for the proposed ME research centre in Norwich was played before the film, the film itself did not cover the issue of research, or the lack of funding for it, or the question of which type of virus causes ME, or how ME came to be seen as a psychological rather than a physical illness. The emphasis was firmly on the mistreatment, the lack of availability of appropriate treatment, the devastating effects of graded exercise, the struggles (not always successful) to keep suffering relatives out of the hands of professionals who would impose it on them, and otherwise treat them harshly. The story of Sophia Mirza’s ME is wholly bound up with her sectioning and subsequent relapse and death and so it was included in her part of the story; by contrast, Lynn Gilderdale’s death was not described, which is no bad thing as the story has been told time and again in almost every media interview with her mother.

Having read three of the five sufferers’ stories elsewhere, I generally knew what was coming, so the film was not as hard-hitting for me as it might have been for others, and particularly for those with little or no familiarity with this subject. The exceptions were the section on Naomi, part of whose story is told in Lost Voices but the story of her treatment in hospital is not in the book; there was video footage in this film of her attempting the graded exercises, with the nurse telling her at one point that it would be as easy to walk to the chair at the other end of the table as to retreat to the one she had got up from — I kept wanting to say “don’t do it, Naomi!” — and the audio recording of Sophia Mirza’s attempts to put off being sectioned after police and social workers had broken her door down in 2003. She was heard trying to persuade them that she had in fact improved over six months (since her mother had been threatened that she would be sectioned if she did not get better) and pleading to be taken to an ME clinic instead, whereupon she was told that she had already had two opportunities to go to such a place.

The film described the devastating effects of graded exercise on several of the patients, as well as the negative influence of psychiatrists; Kay Gilderdale was shown saying that all their dealings with them were destructive, and they nearly killed Lynn. Naomi and her mother were both extensively interviewed (she was the only patient who could be interviewed), and they both recounted the terrible treatment she had received while in hospital, and the hostility she had encountered from nurses who worked their way down the ward, greeting the other children with smiles but “the mask slipped” when they got to her. There was footage, and her own description, of her life now; much of it spent either sitting and looking out of the window, which sometimes she loves doing but at other times makes her sad as it reminds her of what she is missing, or lying in bed, her bedroom darkened. This section of the film is really valuable, as someone is able to give a coherent description of what it is like to have severe ME for a long time, and it was very powerful.

Linda Crowhurst was too ill to be interviewed, but some video footage was shown of her saying she was in agony, desperate to use the loo but unable to be touched (and therefore moved) as it would cause her so much pain. Greg Crowhurst, her husband, described the extreme difficulty of finding anyone who believed in her illness enough to treat it; one psychologist told her she was simply “afraid of standing”. Professor Malcolm Hooper emphasised that ME was a physical illness with much in common with MS, not a psychiatric condition; Dr Nigel Speight, a paediatrician with a long history of dealing with children with ME, noted that doctors sometimes refer children with ME back to their GPs, or prescribe GET and become increasingly hostile to the children as the treatment produces the opposite of the intended effect. The story of “B”, who is fifteen and whose family still fear further intervention from social services, was told by a male voice-over who was not related to her; the story was illustrated by stills of her empty room changing with the time of day. She was taken from her family and put on a locked ward after her family resisted attempts to force her onto graded exercises; she eventually became bedridden (as she still was, at the time the film was made) and for a while lost the ability to speak. The family managed to extricate her from the care system by involving the Young ME Sufferers’ Trust, which had access to the experts who could demonstrate that her ME was a physical illness and could not be helped with the graded exercises being imposed on her.

In short, this was a very powerful documentary on this most pressing aspect of the ME situation. When I reviewed Kay Gilderdale’s book in April, I wrote:

What this is not is any kind of investigation as to how widespread the kinds of abuses Lynn suffered were, or are, and such a book is sorely needed and Lynn’s story would no doubt feature heavily in it. There have been countless stories since of people with ME, including severe ME, suffering because of the disbelief of doctors who insisted that their illness was being ‘encouraged’ or was the result of abuse, leading to children being removed from their families or threatened with such action.

While this documentary names no names in terms of who is responsible for the abuse (as, for example, a Panorama documentary in 1999 did) and does not mention the role of people like Simon Wessely, Peter White et al, or even what parts of the country the sufferers came from it does show that the abuse is widespread and has carried on long after it should have been obvious that the treatments they had been using did not work, and long after the scandals of the 1990s were exposed. One would hope that more people in the UK can see it, and particularly that it can be made available to those in the nursing and medical professions, and particularly students and those at a junior level as their minds are the most open to influence (there are quite a few junior doctors and GPs who have never heard of ME). I believe it needs a British audience much more than it needs an American one: the cases discussed are all of British people who lived in the UK and were treated in British hospitals. Much the same may happen in the USA, but the documentary does not show that (and does not mention anything of the history of “chronic fatigue syndrome” in the States) and we do not need Americans self-righteously pointing fingers as if this were typical of British healthcare, or “how the Brits treat the sick”, when a large percentage of Americans simply cannot afford healthcare of any sort, a state of affairs that is unlikely to change soon.

After the film, there was a discussion involving Dr Speight, Declan Carroll of the Irish ME Trust, and a Labour councillor on Camden Council (no more senior politician was available). The councillor talked a lot about disability in general, and I recall him saying that the council was doing nothing about ME, but called for “stupid legislation” such as the Disability Discrimination Act to be abolished and replaced with laws with more substance. As for Dr Speight, I most clearly remember his answer to one of my questions, namely why doctors and social workers were so vicious to patients with severe ME. He replied that the profession had changed considerably in the last 30 years ago, being much more open to patients’ opinions than it had been; in the past, doctors were paternalistic, convinced they knew best, and sometimes apt to lie to patients about their condition. However, ME remains one area where doctors still feel they can bully patients. He also mentioned that social workers deal often with very hostile families on council estates, some of whom set the dog on them, so when they are expected to deal with a quiet and pleasant middle-class family with a bed-bound daughter, they get a sense of power that they had been unable to access when dealing with their usual “clients”, and exercise it freely.

At the moment, there is no further opportunity to see this film; people in the ME community who were unable to get to either of the two screenings are clamouring for a DVD release, but the producers say they are “waiting to hear from an international distribution company”. I should add, though, that people with ME are not the best audience for this, and children with ME (let alone severe ME) should not be shown, as the producers have already advised — it will cause them an awful lot of distress. I should add that friends of people whose stories are featured in the film are unlikely to learn anything new from it that their friends haven’t already told them. Particularly in the light of the dreadful coverage of the “death threat” accusations last summer, those in the media should see this for their own education. It demonstrates amply who are the victims in this whole affair, and who, unlike their accusers, do not have the luxury of being able to flee to the alleged safety of Iraq or Afghanistan. They should be able to feel safe where they are: their homes, their beds, and when necessary, their local hospital. In the light of recent events elsewhere in the world, it has become the mark of a despotic regime that people are not safe in hospital — this is, in fact the case for some of our own sickest and most vulnerable people. It is not worthy of a civilised, advanced country like ours.