His government, he said, was rejuvenating the job market by getting people off benefits and into work: “Everyone should work who can.” It was the “saddest figure in Europe”, he said, that Hungary had the lowest employment rate in the EU.

For the long-term unemployed – a disproportionate number of whom are Roma – this means taking part in the government’s new public work programme. According to Jeno Setét, a Roma activist, between 70% and 80% of Hungary’s Roma population do not work (the rate for the whole population is around 10%). This scheme aims to get 300,000 people into work by 2014 via a sort of community service scheme for which participants are paid less than the national monthly minimum wage (around 80,000 HUF – £214 – for unskilled workers) but slightly more than they would receive in benefits.

Anyone unemployed for 90 days is offered a place on the programme, which administers projects cleaning streets or sewers, cutting down trees or building football stadiums or dams. Refusal to accept a placement will result in all social security benefits being stopped to the refusenik and family. Gyöngyöspata was chosen last year to run a pilot scheme. Unemployed locals – almost exclusively Roma – were deployed to cut down trees in a nearby wood.

For Setét, the public work scheme is a “smokescreen” that will do little to help Roma get “real” jobs and will reinforce their position at the bottom of Hungarian society. “If people on the scheme were paid properly and trained properly, I’d be all for it,” he added. “But they are not. Right now it’s a way of humiliating people and paying them a slave wage.”

While the system of “work for benefits” does not involve the obvious racism present in the Hungarian version, it does not even pay more than benefits and is not even in public services but consists of fake “work experience” schemes for large commercial organisations and also carries the threat of lost benefits. The US version is known to have pushed people into food banks and soup kitchens by withholding benefits in the absence of work; our other fellow-traveller in this is a notoriously racist country in eastern Europe which is becoming an undemocratic pariah state.

This article exposes something I have had personal experience of in the past year, which is proper jobs (usually minimum wage jobs) being replaced by “self-employment opportunities”, in which the worker is paid directly and expected to look after his own taxes and National Insurance contributions, and commonly they are paid less than the minimum wage, which is quite legal as he is not actually an employee but a contractor. The Daily Mirror has been running a campaign, “Gizza Proper Job”, which exposes this behvaiour going on in a number of major companies including one that I’ve worked for (not on this basis), Hermes Parcelnet. Their full index of stories on the subject is here and sectors implicated include nursing, car manufacturing, hairdressing, telesales, doorstep energy selling, scaffolding, car delivery … you name it, it’s there.

I haven’t been on any of these “self-employed” sub-minimum-wage jobs, but I had an agency convert itself into such an enterprise and begin pressuring its employees into going on one of two contracts in which pay was administered not by them, but by a third party, and the worker was expected to pay the contractor’s fees. The drivers at the site where I did most of my work either refused to sign or insisted on being backed out after a week when the promised higher pay did not materialise, but they then started using another contractor and told me it was either self-employment, a managed limited company (which paid my wages as a “director” of that company) or no more work. I approached other agencies and they told me that the limited-company approach offered benefits when the worker was in a long-term placement, but not when they were working on an ad-hoc basis. The management companies (Oriel and PML are two of the biggest names in that particular business) charge a fee either every month or every week, and if you only get one day’s work in a week, you may lose most of it to the management fee.

The ostensible reason my agency did this was to circumvent the new agency worker regulations, which were apparently rushed in over the last summer and most companies were unprepared. Their main provision is that long-term agency workers are entitled to pay equal to that of similarly and directly employed workers, and the agency tried telling me that this would mean my wages being adjusted downwards if I had been getting paid more than the directly-employed workers. In fact, the rules state that agency staff must be paid as much as or more than them. Agency staff are often paid more per hour than regular staff because they do not have any security and may be travelling further (I regularly travelled to Maidstone, and frequently to Worthing, for one of my agency driving jobs), and often find their wages reduced if a “temp-to-perm” job actually becomes permanent. In any case, the organisation I was working for (an ambulance service) was only hiring agency staff to do this particular kind of work, so the issue of adjusting my wages would not have arisen.

Owen Jones, in his recent book Chavs, had a section on the casualisation of the work market, with a move to hiring agency staff to do regular jobs so that they can be sacked at a moment’s notice if they were no longer needed with no redundancy pay, but this move away from proper employment contracts towards “self-employed” work at below the minimum wage seems to have only just been picked up on - the Mirror reported (on their “Penman and Sommerlad investigate” blog, not in print) last June about the “trade platers” (people who deliver cars on “trade plates” or temporary licence plates) who earn well below the minimum wage and frequently have to hitch-hike from car auction sites which are away from regular public transport (like the one in the middle of nowhere off the A30 west of Camberley). This is something I became aware of in 2007, so it’s not new.

I will certainly be giving my story to the Mirror’s investigation (and naming the agency, which I haven’t done here yet). Luckily, I got out before I could get scammed, but it seems others are too desperate for work and will take anything, however poorly it pays (I’m still living with my parents). It is not the only way employers are currently able to get around the minimum wage (which is only £6.08 per hour currently) — among the others is not paying someone for the time which is taken travelling from job to job for the same employer, as touched on in this article attached to the Panorama on this subject from last October — but it also exposes the worker to the liabilities of tax returns and potential (large) fines if they make a mistake. Those who work in the media may be able to afford that, and they are better educated and have access to networks of other freelancers. Agency drivers don’t. Fake self-employment must be exposed and must be stopped.

The Royal Mail is a heavily unionised organisation; they have stiff competition not only from the Internet, which makes the sending of an awful lot of letters simply unnecessary, but from the courier companies which seem to use an awful lot of casual labour, which frequently includes me. I worked for two of them this past week, in fact, delivering parcels to villages outside Guildford on Monday and Tuesday and offloading parcels from trailers in another big depot early on Friday morning (something I hope I don’t have to do too often). I got the impression, in that last job, that health and safety isn’t taken altogether seriously and frequently found myself dodging flying and falling parcels.

The courier companies rely on drivers with sat-navs, and commonly print address labels themselves rather than letting the customer address their own mail. This particular company prints labels which give a broad post town rather than the actual village the address is in, so an address in Worplesdon or Puttenham (both GU3 postcodes) is frequently given as Guildford, when in fact they are well outside Guildford. My A-to-Z atlas has the actual villages in the index, but not the postcodes, so looking up an address in GU3 is next to impossible as I don’t know what village the place is in. Worse, in rural areas they don’t use the “door number, street name, postcode” system, relying on house names, so we have to put the postcode into the sat-nav which takes us to a particular stretch of road. Well, if the street is a narrow, busy main road, we have to drive at 10mph while looking at the house names (not always prominently or legibly displayed) rather than at the road, and if we don’t see it, there is no place to turn round.

My local knowledge of the villages round Guildford is pretty limited, as I’ve never lived there and haven’t been able to walk the round to know where the houses are, which you do if you’re actually a postman. A courier company will get something through if it’s an easy delivery, preferably in an urban area. If your parcel is addressed to someone in a rural area and goes to a courier company’s depot on a day when the regular driver is off sick, the chances are they will send a driver from well outside the area to look for a needle in a haystack, and several relief drivers may fail to find it, resulting in a delay of several days. If you’ve got a parcel to send, it may well be better to send it by the Royal Mail, as the guy delivering it is much more likely to know where he’s going and won’t be a casual van driver as they don’t get postmen on a day-to-day basis from agencies. (Or at least, it’s not work I’ve ever been offered in ten years of agency work.)

(Image courtesy of FreeFoto.)

We marched down to Parliament Square, up Whitehall, past Trafalgar Square, up Lower Regent Street, down Picadilly and finally entering Hyde Park by the Queen Mother’s Gate and then proceeded to a stage which was fairly close to Speakers’ Corner. We both arrived just after 2pm, although at that time, people were still leaving the Embankment. The march was noisy with a lot of horns blaring, and I remarked that my friends who have ME (often sound-sensitive) would not be able to tolerate the noise; she said that people with autism would have similar problems. I didn’t get many photos taken, because I needed to keep pace with Riven and so could not do my usual thing of taking a step out of the march while I took the photo; you can’t turn and look the other way otherwise you’d get walked over. (I’ll post the pictures I did take on Flickr later, and link them here.)

Unusually for a march in London, I did not hear that many slogans being shouted; people mostly marched in silence except for the horns, letting the posters and placards do the talking. There were a few witty ones, including one I saw at the start of the march saying “Cameron puts the N into CUTS”, and I saw a group of women by the side of Piccadilly with a banner saying, “Dykes in Black Against War”, which they had crudely amended to say “against cuts”. At Hyde Park itself I saw a lot of people carrying Syrian flags including a huge one which they carried between them, face up, and I also saw a small group of what looked like pro-Qaddafi (or at least, anti-intervention) demonstrators carrying the Green Libyan flag (rather than the old flag used by the rebels). One banner I saw quoted in a tweet by Johann Hari was from a severely disabled woman and said “Cameron, if you want my benefits, you can have my disability”. A group of disabled people and their assistants I saw at the start of the march had T-shirts saying “We known inclusion works”.

I broke from Riven to pray, while she watched the speeches, including one by Ed Miliband which she found underwhelming. When I came back, she told me she was bored listening to the speeches; I suggested we go and have a coffee, which led us to a Starbucks a couple of streets away where she could also plug in her wheelchair to recharge the battery. We had to go via Oxford Street, and found that the street had been closed off and shops were beginning to close in preparation for the “side demonstrations” by the anti-capitalists. We were safe in the Starbucks, we both had a flat white which, unlike their lattes, does actually taste of coffee (and I told her about the time I ordered a flat white in a Slug and Lettuce recently, and they brought me a glass of white wine instead of coffee) and we discussed an awful lot of things to do with her children (she has one with Asperger’s as well as Celyn who has severe cerebral palsy; she uses a wheelchair herself because of MS), my own Asperger’s experience and various aspects of disability politics, before setting off for her hotel (in County Hall, south of the river at Waterloo) by a round-about route through Mayfair, Soho and Chinatown, so as to avoid both Piccadilly and Oxford Street. We got to Regent Street via Conduit Street, and found that a demonstration was being contained just north of there and headed down Conduit Street just after we left, and I later heard that there had been some incidents in New Bond Street which we had to walk down (or rather I did!), so we got through there in the nick of time. I finally left her at her hotel around 4:30pm and headed for east London for a curry.

Throughout the afternoon I kept hearing of incidents of vandalism around various parts of central London, including banks having paint thrown at them (I saw some of the results of that later in the evening) and the windows of shops and banks being smashed; one thing that kept coming up was that the media always reported the vandalism but didn’t say much about the march itself because a peaceful march without any trouble is not news. There is some direct action I have some sympathy for (like occupying the premises of companies that dodge tax while the rest of us suffer tax rises and service cuts), but smashing windows really doesn’t achieve much. That said, the BBC’s top story on its website was the march and not the violent incidents surrounding it, and they printed a selection of pictures of the banners people carried (I particularly like the “crocodile” one). The march I saw had a great atmosphere and was well-attended and calm; I hope the idiots who smashed up buildings didn’t spoil the event for anyone who demonstrated after us.

I am planning to attend the march organised by the Trades Union Congress this coming Saturday (26th March), but I am very uneasy about the plans to organise spin-off events including the shutting-down of a number of shops in the West End and occupations of Hyde Park and Trafalgar Square. In the first case, some people attending want to get through, hear the rally and go home, and do not want to get caught in a police “kettle” intended to contain the disorder manufactured by fringe gangs of lunatics (the sort of groups which often get infiltrated by MI5 or Special Branch anyway). Among those attending are a large number of disabled people who are going to have personal needs to see to fairly soon after finishing the march, and getting penned in for several hours is going to be bad for their health.As for turning Trafalgar Square into Tahrir Square, I’ve been to rallies in Trafalgar Square and remember one particular incident in which George Galloway exhorted the crowd to shout solidarity with the then besieged Fallujah (it was generally believed, rightly or otherwise, that those holding it were al-Qa’ida). The response was not particularly enthusiastic. Anyone familiar with the recent history of the Middle East, particularly the dictatorships outside the Gulf region, knows that the difficulties people are facing in the UK right now do not come close to what prompted the recent protests in Tunisia and Egypt — we are not living in a police state, we have a free press (certainly compared to anything found there), we don’t have “emergency laws” which allow people to be locked up for years for no real reason by military tribunals without any appeal (or just locked up without any trial at all), we are not forbidden from wearing what clothes we like as long as they’re decent (traditional Muslim dress is effectively banned in several Arab countries, particularly for men).

Yes, bad things are happening. It’s worth demonstrating to protect the mobility allowance for disabled people, and to save community centres that provide activities for local elderly and disabled people from being closed. But if a group of people decide to provide these services out of their own pockets, are they going to have their doors kicked in by the secret police, their computers and equipment seized, and the organisers carted off to jail? No, they won’t. People have been locked up in some countries for things which would not be considered out of the ordinary here, because the state recognises that this is dissident activities (such as organising screenings of Gandhi). These conditions don’t exist in this country, and nor do the stifling corruption present in both Tunisia and Egypt under the régimes that recently fell, so talking about Tahrir Square just smacks of overblown revolutionary rhetoric. To anyone who’s experienced a really repressive political atmosphere, it’s offensive.

As for closing shops in Oxford Street, these people could do this any time, but choosing the day of a big demonstration simply detracts from the power of the demonstration and makes life difficult for anyone who wants to get on with their business (perhaps after the demo). I’ve been uneasy about this kind of activity since my sister had a narrow escape from a McDonalds which was attacked by a mob of “anti-capitalists” a few years ago in London. They have had years to build up a head of steam for their revolution but only manage brief and pointless bursts of violence. Some might say demonstrating achieves nothing, but that kind of activity will achieve one thing — curtailing other people’s right to protest, while leaving the system they claim to despise intact.

David Cameron gave a speech today in which he claimed that, while reducing the budget deficit was his duty, his so-called Big Society was his “passion” and that one part of this would be a “Big Society bank” to fund charitable projects. However, charity representatives are saying that his government’s spending cuts are forcing the reduction of existing voluntary activities, with charities making some workers redundant. The new “bank” will use £100m from dormant bank accounts and £200m from the Project Merlin deal to “support working capital projects approved by the government”.

What isn’t being discussed here is the matter of infrastructure. Voluntary means two things: work being done for nothing, and work being funded by people’s donations rather than from taxes. Given that the government is raising taxes, particularly VAT and fuel, while cutting public spending, which is likely to mean people being made redundant, the amount of money charities will be able to raise from people (other than the already very wealthy) is going to be more limited, and this will be more true for small, local projects.

As there will be more people out of work, there are likely to be more people available for voluntary activities. However, if the government cuts grants to local councils, and local councils can raise less money because there are fewer workers, the infrastructure the voluntary work relies on is not going to be there. Here in Kingston, for example, the council proposes to “cut £250,000 from its care budget by targeting services it has no legal duty to run”, which will mean closing four centres which provide services to the elderly and disabled, including two here in New Malden. If the council no longer provides these services, perhaps it will be left to volunteers or a charity — but where are they going to operate if the buildings have been sold off to property developers, as has been proposed for the centre here in New Malden? Once these buildings are sold and very likely demolished, they will not be coming back.

I’ve worked out of one of these centres, driving mentally disabled adults from their homes and care homes to that building and out to various leisure activities around south-west London. Now, work may be free, but vehicles aren’t (unless donated) and maintenance isn’t, and fuel certainly isn’t in the present climate, something the government is making worse by staging three duty increases in a few months at a time when the price of fuel has climbed to a record high, after a poor Christmas retail period when the country is just struggling to come out of a recession.

In short, voluntary work costs money, and if the government wants to take money out of our pockets and the general economy then there will be a whole lot less of it. It looks to me like nothing more than an empty slogan, intended to soften us up to the fact that we will have to pay the state more yet expect less of it, particularly if we very much need the services it provides.

Image source: ICTeachers.

The fact is that the regulation by which someone can have their benefits stopped for turning down work has existed since the JSA was introduced in 1996. Claimants (or “customers” as they call us at the Job Centre) are expected to fill in a little log book telling the consultant (I think that’s what they’re called) what they’ve done to look for work the past fortnight, and they are supposed to make three approaches a week. The problem is that you don’t always find suitable work, but there is nothing to stop you just not applying, or not telling the Job Centre you applied, or applying for jobs you know you couldn’t do or don’t fit the requirements for, or deliberately underperforming at the interview, and there’s no need even to do that if you really don’t have the experience or know-how they want. The chance of getting offered a job and losing your benefits by turning it down are actually very slim. How they plan to tighten up on this, I have no idea. The consultants already find us jobs out of their database, but it’s up to us to apply for them as they do not have the time to sit over us as we apply.

The reason I’m out of work is because the job market collapsed in 2008. This has been a problem for a lot of people, and for someone like me who spent the past 8 years driving vans and small trucks, moving into any other work is going to be difficult because jobs are scarce in other sectors too, and they all want (and can demand, as there are no shortage of applicants) people with experience, which does not mean me. Speaking to people at my old agency yesterday, I was told that numerous firms at the industrial park where I used to work a lot (Park Royal in north-west London) have closed or moved out (because Park Royal is sprawling yet congested) and they told me they had seen numerous commercial premises in the town where they are based (Staines) which have become empty. This doesn’t mean I don’t look for work, or don’t want to work. What I end up doing is spending as much time as I can bear, searching job banks and finding jobs I’m perfectly capable of doing, but I don’t have the professional experience of doing.

If you remain on benefits for a certain length of time, they put you on their “New Deal” programme, which means going to two full-time training sessions which need not be in a convenient location (in my case, Croydon). There’s a two-week and a thirteen-week programme, in that order, and I’m near the end of the two-week programme right now. It’s not great. The first week consisted of a lot of workshops which consisted of a lot of motivational patter and group role-playing. They told us that there would be a “job fair”, but that consisted of standing around a table covered in print-outs of jobs I could have found simply by searching the job banks. Today, they brought in an employment agency, but did not tell us until it actually started that they were only looking to recruit people to work in a betting shop. Much of the rest of the time is spent sitting in front of computers searching the same job banks I was searching at home (incidentally, using a version of Internet Explorer which is incompatible with a lot of online application forms). Admittedly, I have actually applied for a couple of jobs I might not have done had I stayed at home, and secured an interview (for an actual job, not an agency), but there’s a limit to the amount of time you can search the same job banks for the same jobs. I’m not sure I needed two weeks to do this.

The “community service” is an even bigger joke. This is work. People should be hired and paid to do this, not made to do it to get the same money (which is roughly a day’s pay per week) they would otherwise have got for doing nothing. This is also likely to be the same work that might otherwise be done by people sentenced to community “payback”, as they now call it, for committing crimes, so why has being out of work become morally equivalent to spraying graffiti or other anti-social behaviour? Because the assumption is that people don’t want to work, not that there are no jobs available (particularly if an entire town’s industry has been destroyed by the government, without any replacement).

There are, sometimes, disincentives to take work — for example, if an agency offers me one day’s work, the money is mostly offset against my JSA money, which means I gained very little from going out to work if it’s just one day in a week (unless there’s a lot of overtime). If I get two days in a week and there’s overtime (i.e. more than 16 hours over the two days, which is often the case in driving work), my claim is stopped and I have to go through the rigmarole of getting it started up again. But the biggest disincentive is simply the high cost of living and, particularly, housing, caused by the sell-off of the public housing stock which was built at tax payers’ expense without replacement, the explosion of the buy-to-let industry in which private landlords rent out houses and flats they don’t fully own at a higher rate than their mortgage repayments, and the Blair era property boom (read: massive house price inflation), which means that housing alone will take up a huge percentage of someone’s pay if their pay is not that high.

This leads to recurrent headlines about families receiving colossal benefit payments, and even if they are true, they do not equate to a family living high on the hog in a posh area of London; that is simply the cost of housing a family in London. The coalition’s solution to this is to cap benefits so that they will no longer be paying to house benefit claimants in “desirable” areas, which were, of course, not all that “desirable” a generation or so ago. According to Tory poster boy Shaun Bailey, people don’t have the right to live in the areas where they grew up, and that “it is unfair that middle-income couples find themselves commuting from the capital’s outer reaches because of high housing costs while the poor have their rents in prime locations guaranteed”. Well, actually, many of them moved to those outer areas because they were leafy, offered spacious housing and were themselves desirable, not because of high housing costs in inner London — far from it; much of inner London was rough in the 1970s. The places they plan to ship benefit claimants out to are not even in London but are in run-down resorts on the South Coast and in Essex, and one wonders how these people will get to low-paid jobs in London, as commuting costs will be far higher than what they may pay now (which may actually be nothing, as they may live within walking or cycling distance of their jobs). There is really cheap housing in some places, but they are places where jobs have been destroyed and which are full of undesirables. Why should perfectly respectable families be forced to live in slums, to save the middle-classes and the rich (many of whom benefited from tax-funded state services such as health and education themselves) a bit of tax money?

The one section of society which has taken to the streets in large numbers is, of course, students — missing the odd lecture isn’t a big risk for them like missing a day’s work is for someone in a job. My sympathy for them is not that great. I was one of the last groups of students to miss paying tuition fees and even then, there were a lot of students who seemed more interested in the “social side” of university life than in their actual studies. I actually attended the NUS conference which scrapped the organisation’s demand for a return to pre-Thatcher grant arrangements, back when the NUS was under the control of the Labour student group. There was a lot of underhanded behaviour by some of the Labour officers, particularly at local and regional levels, but the old policy just was not realistic, as the old maintenance grants that were frozen under Thatcher paid for a much smaller group of undergraduates than there is today at a time when university was hard to get into and a degree was not a necessity for a lot of the jobs in which it is today. We cannot afford to keep a huge percentage of our youth out of work for three years; we need to find ways of reducing this burden and getting more out to work at 18 or even younger, and increasing opportunities for people to go back into education when they have more inclination than they had in their teens. The situation of young people remaining largely dependent on their parents and in full-time education until the age of 21 is unsustainable, and not only for economic reasons.

The Centre for Policy Studies (which is, as I understand it, a traditionally Tory-aligned think tank) has published a report by Cristina Odone putting the case against legalising assisted suicide and euthanasia, mostly on grounds that it would put elderly and disabled people in a very vulnerable position at a time when economic difficulties are leading to care budgets being cut drastically and we have an ageing population. Odone is a former editor of the Catholic Herald (1991-95) and former deputy editor of the New Statesman (1998-2004), has published two previous reports for the CPS and is the brother of Lorenzo Odone, the severely disabled boy who featured in the film, Lorenzo’s Oil (1992). Two of my friends (who have M.E., the same illness as Lynn Gilderdale who is mentioned often in this report) agreed that “religion should be left out of the euthanasia debate”, and this report does not argue on the basis of faith but of the possible consequences. The full report (as a PDF) can be found here.

One of the two friends said she couldn’t read the full report, so I’ll give a summary of it here:

• Legalisation of euthanasia would lead to pressure for it, particularly on elderly people whose care needs are a burden on relatives (or the state), and reduce their legacy. In the words of Baroness (Mary) Warnock: “Pensioners in mental decline are ‘wasting people’s lives’ because of the care they require and should be allowed to opt for euthanasia even if they are not in pain” (p.17 of PDF). Elderly people may feel morally obliged to choose euthanasia because they are a “waste of money”, requiring expensive care when that money could be used to fund a grandchild’s education, for example.
• In the Netherlands, where euthanasia has been legal since 2001, a private organisation has issued an opt-out card to prohibit any medical action intended to end their life, such is the fear of involuntary euthanasia. Campaigners there have sought to have it legalised for anybody over 70 with an “end-of-life pill” available at all pharmacies. In Oregon, euthanasia has been offered to people with treatable diseases because the ill people lack health insurance and euthanasia is much cheaper than the treatment they require.
• In light of Starmer’s recommendations on prosecution for assisting suicide, “the present law provides safeguards for the vulnerable and compassion for those who, in extremis and moved by the purest motives, help someone whose suffering has become unbearable carry out a settled wish to die.”
• Countries where euthanasia is already legal have drastically inferior standards of palliative care to the UK’s — none in the case of Oregon in the USA and the Netherlands, and very primitive in the case of Belgium. Physicians in Oregon are surprised that euthanasia is being considered in the UK, for this reason. Britain has been a pioneer in palliative care, spending £1.4m on hospice care daily, and the field has been a recognised clinical specialism since the 1980s. Death is usually not as horrific as people expect, with the right care, and stories about terrible endings from certain diseases (e.g. motor neurone disease) often refer to rare, extreme cases.
• Most doctors (two thirds) oppose legalised euthanasia, and it is likely that patients will become suspicious of any doctor who has been associated with it. In many cases, those with life-threatening illnesses also have depression which is treatable. Someone worn down by a debilitating illness (and troubled by symptoms like incontinence) may become more susceptible to “hints” that their not being there might perhaps be better for everyone.
• If Terry Pratchett’s idea of a tribunal consisting of “wise”, “upstanding” over-45s to regulate euthanasia comes into effect, it would consist of members of the educated élite making judgements on behalf of socially marginalised people, yet if conditions such as depression could go unnoticed by doctors, it is more unlikely to go unnoticed by a group of untrained “wise” people.
• Even when people make living wills (advance decisions) dictating that they would want to die in a given situation, when the situation arises, they may actually change their mind, as happened to Richard Rudd in Cambridge, who was paralysed in a motorbike accident having issued such a decision, but indicated (using only eye blinks) that he wanted to live when it actually happened.
• There is a chapter on recommendations titled “Towards a Dignified Death”, in which she recommends equipping care homes to deal with sick and dying residents rather than rushing them to hospital, improving access to respite care, and letting people know about the possibility of Advanced Care Planning (ACP), “in which health professionals discuss with patients how best to plan for their end-of-life care (including the individual’s concerns and their understanding about their illness and prognosis)”.

The point about how dangerous it is to discuss euthanasia and assisted suicide at a time when the economy is collapsing, and the likely result is a drastic reduction in care spending (despite pre-election promises of a National Care Service) which would put respite care beyond the reach of the average carer (one example given in this article from the Guardian yesterday) and exacerbate the sense of burden on both sides, and reduce the availability of suitable long-term care and the likelihood that a vulnerable, sick person might be able to find care that they would want to accept, which might be at home or in a care home of some kind (it is assumed that they would want to live at home, but some might not want to if their family situation is not suitable). The name of Lynn Gilderdale is mentioned in this report, and one factor that was mentioned in press reports of her mother’s trial was Lynn’s fear of having to move into a nursing home, having suffered terrible abuse in one hospital and poor care in several others.

It is unlikely that, by 2008, the availability of decent nursing care in the absence of her mother would have made any difference to Lynn’s decision (there is, actually, a fine hospital called Burrswood near to where Lynn lived which has a good reputation for caring for severe M.E. patients). The issue should be how people are prevented from getting to the point where Lynn was in 2007-8, which was not only that she had one of the worst ever cases of one of the most debilitating and painful illnesses known to mankind, but also that she had suffered one traumatic experience at the hands of doctors and nurses after another and, judging by some of the comments she posted on various LiveJournal forums and blogs, remembered them all too vividly and had little to distract her from both those and her intense pain, sickness and other symptoms. However, the fact that she had all this to contend with was because doctors refused to believe that her illness was real and that her symptoms were real, or that she really couldn’t breathe when she said she couldn’t (because they’d messed up her Hickman line replacement and filled her lungs with blood, as it happens), and the abusive treatment she received in hospital initially may well have contributed to her illness becoming as severe as it was, and remaining that dire for so long (one thinks of three women in particular that are well-known to the M.E. community who went down with severe M.E. around the same time as Lynn, and although they are all still severely affected, none of them have symptoms as extreme and exist in circumstances as restricted as Lynn’s).

In short, we might have fewer sick people considering this course of action if medical staff treated patients better and could expect to be brought to book for abusive or dismissive treatment of their patients. However, we must also make sure that the sick and severely disabled are not simply left alone in their pain. I remember reading of Hilary Lister, now best known for sailing solo round Britain in a breath-controlled boat but, until 2003 (when, incidentally, she was the same age as Lynn Gilderdale was in 2008), spent most of her time sitting on the sofa, unable to move and in severe pain, and seriously considering euthanasia. If it had not been for the suggestion of going to a nearby disabled sailing club (something which would not have helped Lynn Gilderdale), we might now mention Clifford Lister, her husband, in the same breath as Kay Gilderdale, and it raises the question of why someone in her position would simply be left home alone for most of each day. It has been reported that some of the quadriplegics who have committed suicide (sometimes by starvation) or had their ventilators turned off over the years have done so because of having to sit around in a “home” (or even their own home) all day, every day instead of having something to do besides think of their pain, or distressing symptoms, or what they have lost. This needs people, and money.

Odone titles chapter 2 of the report “Death as a Consumer Choice”, and includes several of the best known cases of assisted suicide over the years: Douglas Sinclair (whose friends were arrested for taking him to Switzerland), Daniel James, Lynn Gilderdale, and Edward Downes and his wife Joan. I don’t believe for a minute that it’s always regarded as such by those who consider or enter into assisted suicide; it’s often a decision that is agonised over, as was clearly the case for Lynn and Kay Gilderdale. On the other hand, there are those with degenerative conditions like MS and motor neurone disease who seem to have had their fingers on the “quit buttons” almost from the first signs of trouble, as one can see from the interviews with Debbie Purdy and Chris Woodhead in the Panorama programme featuring Kay Gilderdale that was broadcast by the BBC this past February. Worse, when the courts found in her favour, she was filmed celebrating, splashing open bottles of champagne, something I found chilling. It reminded me of something I’d read about a pro-abortion protest in Australia many years ago:

Many professional looking and smartly dressed women stood on the smooth grass. They cheered together for speakers who said abortion was just a women’s health issue, entirely up to a woman and her doctor, needed to prevent backyard jobs, something that politicians should not have any role in. “Who has any right to tell a woman what to do?”

A pro-life friend watched the protest whilst sitting on the grass under the oaks. She told me that the protesters cheered over one woman’s abortion story. This woman had a child, then two abortions, and then another child. The sound of women cheering over abortion horrified me. It is one thing to believe abortion should be a choice available for women in difficult circumstances. It is another to cheer about it.

The case of Daniel James, who had a C6/7 spinal cord injury, besides being a good example of someone with a possibly treatable depression, was an example of someone who was just coming to terms with a permanent disability was helped on his way, rather than helped to come to terms with his situation, by misguided loved ones. People may well not want to carry on when reaching a critical juncture in their lives (18 months to two years is the point at which one’s level of function after a spinal cord injury stops improving), but may change their minds some time afterwards. The same may be true of someone living with a long-term sickness or disability who suffers an emotional upset, which may or may not be related to their condition but which, at least for a time, radically changes their view on life and whether it is worth continuing, which they may reconsider a few weeks or months down the line.

Objections by religious people to legalising euthanasia or assisted suicide are often dismissed, both by the “chattering classes” derided in this report, and sometimes by advocates for some severely ill people, as the last stand of heartless fanatics and zealots. There are very compelling reasons to resist the drive towards legitimising euthanasia, given that the “next step” as shown in some places is legalising it for people much less infirm than those who, it is thought, might want to avail themselves of it now. I have even seen a letter in the Times from an old lady who stated that she was quite happy in her current abode, a nursing home, and had no wish to die, but if euthanasia were legal, she would consider herself obliged to take it up as her 19 descendents need the legacy currently being used to pay the nursing home bills. It should be remembered that in this country, we have not jailed people for assisting the suicides of very ill people who are unable to do it themselves for a long time, as long as it was actually suicide — people were getting probation in the 1980s, today they are often not prosecuted at all — so it is not as if our laws on the subject are draconian. We should not let a minority of emotionally resonant cases blind us to the possible consequences of opening up the doors any further.

I was in the Charing Cross branch of the chain today. I went in only briefly, because the main reason I used to go there — the extensive selection of magazines — has gone, and most of the books have been sold off cheap, albeit not cheap enough to buy when you’re on the dole. I noticed a sign, in much smaller print than the “50% off” signs, that said that books from two major publishers, namely Hodder Headline and Little Brown, which both include a number of major imprints, were excluded from the sale for some obscure reason.

However, I also noticed that the lift was conveniently “out of order”. It was inaccessible in Kingston yesterday, with makeshift barriers in front of the door, although the stairs were still in use. (In the case of Borders Kingston, the wooden stairs are literally ancient, worn and in some cases wobbly; I wonder how they have remained in use as they are not all that safe.) I took out my Android and tweeted this fact to the world. My quadriplegic friend Kimberley tweeted back, “I think that’s ‘normal’ for a lot of companies anyway”. However, it seems a cruel irony, given that a lot of disabled people don’t have much money as they find it much less easy than the rest of us to get work, that when there are bargains to be had, they are excluded when they don’t need to be.

A £40 Virgin Wines voucher!

Suffice to say, I won’t be joining. How is a company that’s already in administration have the resources to hand out freebies to “loyal” customers who’d been back a few times because they’d had sweeteners? Don’t they have debts to pay?