It's now officially 'unsustainable' to support disabled people

Been away from my blog for a while and I had every intention when I wrote something again for it not to be about benefits. However the Government then announced its proposed changes to DLA and I felt compelled to write about benefits again! Blame them not me if you feel I've droned on about the subject!

I've had the piece published online at The Guardian so please follow the link to read my latest blog thoughts. Do let me know whether you agree with me or not!

The Government is implicated in creating negative attitudes to disabled

It is the 40 years since the first Disability Act was enacted and to mark the occasion the BBC commissioned a survey into the public's attitude to disabled people. Interestingly 90% of people thought the Government should do more to help disabled people into work. I found this outlook really refreshing as I recently wrote a piece for the Guardian discussing the need for the Government to recognise that disabled employment must be a two-way conversation: disabled people must be willing to work but employers must be willing to hire. Despite the Government refusing to discuss the fact that it is harder for disabled people to find work, it was great that the average person recognises it as a problem.

Where the BBC survey results were less positive, were in its findings that 40% of people think disabled people would "refuse work even when they have been found capable of doing it". This figure rose to over 50% amongst young respondents and those on low incomes.

Clearly there is a negative perception of disabled people in the UK, which can undoubtedly be attributed in part to right-wing media representation of the disabled. The Daily Mail is notorious for this. A recent front page screamed,  "75% of claimants are fit to work", and carried on: "Tough new benefits test weed out the workshy".

You expect this kind of thing from the Daily Mail. But what shocked me is that the 75% figure came from a press release from the Department of Work and Pensions. And the figure is wrong. So it amounts to blatant Government propaganda. 

The Government has reached its 75% figure by adding together the 39% of people found 'fit to work' and the 36% of people who have removed their claim during the assessment process. This 36% figure is problematic as there is much anecdotal evidence that those withdrawing their claims are those suffering from mental illness who found the process too frustrating and had a negative impact upon their health condition. So the truth is that the Government has no idea what happens to these 36% of people, as it doesn't track those who withdraw their claim. Which also means that the Government has no idea why they stop the claims process, although of course the Mail is quick to claim its because they were merely 'trying it on'.

But let's turn our attention to the number of successful appeals against ATOS's 'fit to work' decisions. When you follow the 'Notes to editors' link on the DWP's very own press release it reveals a more in-depth report which shows that every month on average 40% of appeals against ATOS are upheld and the appellant is awarded ESA. On average, one third of claimants found 'fit to work' appealed against their decision and 40% were successful with their appeal. So if you do the math, once the whole process including appeals is complete, the DWP is wrong to say 39% are fit to work. In fact, 34% are found fit to work. So overall, at best 70% of ESA claimants are 'fit to work' although my guess is that this would be lower still if those 36% who dropped out of the process were given the right initial support to continue with their claim.

Let me remind you that the Government has access to this data, I've taken it directly from its own report. Yet although the release quotes Grayling saying he is "determined to get the medical test right" the successful appeals against the test are entirely omitted from his ESA headline statistics. 5% may be a small difference, but it is a difference none-the-less when you think that this current Government is so focused on transparency and providing accurate information to its citizens.

So it is seems that the Government has decided to spin the statistics associated with who is and isn't fit to work. Perhaps it suits its current agenda for the public to think that the majority of ESA claimants are 'scroungers'? Perhaps ministers realise they can only get the public to accept their massive welfare cuts if the public think the money is going to the undeserving. 

And this might explain why, in today's BBC survey, the number of people who think disabled people choose not to work rises amongst those people who are most struggling to get by in life or get a job. So the Government at least seems to be doing well at one thing: pitting one set of welfare cut losers against another.

Dear Government stop paying ATOS £150m a year for being sh*t!

The Government is heaping more and more pressure on themselves to get it right when it comes to disabled benefits.

In the last week the tough measures they are introducing to get people back into work, such as compulsory four weeks of manual labour and losing benefit entirely if jobs are continually turned down, will make life impossible for those who are too ill to work. So the Government absolutely must turn its attention back to the Employment Support Allowance (ESA) to ensure that those who need it are getting it and not having to fall back onto Job Seeker's Allowance (JSA).

The Citizen's Advice Bureau in Scotland has published 'Unfit for Purpose', an analysis of the impact of ESA on its clients. It reports that "Around 1 in 4 fit for work assessments reach a tribunal, with 39% of these appeals being won by the claimant. Where a bureau represents a client, 70% of appeals are won by claimants." Claimants with Parkinson’s Disease, Multiple Sclerosis, terminal cancer, Bi-Polar disorder, heart failure and strokes have all been found fit to work.

The situation will further worsen with the introduction of the one year time limit on contribution-based ESA claimants in the Working Group category. It will become apparent that some people will find their eligibility for ESA will run out while they are still too ill to work. In cases like this they will be hit twice if they move onto JSA and as a result are penalised for turning down work or work placements they are still too ill to take.

So if the Government wishes to get tough on benefit claimants it must also get equally tough on benefit administrators. ATOS, the company behind the much-criticised Working Capability Assessment (which decides who gets ESA and who doesn't), clearly cannot cope with the task they have been given. Their test is failing some of the most seriously ill. And in exchange for a 40% failure rate, where their decision has been found to be incorrect at appeal, they are awarded an astonishing amount of money.

The Department of Work and Pensions revealed that they paid ATOS £150,798,434.69 between April 2009 and April 2010.  £151 million! And in exchange for this money, ATOS is costing the Government further money in hearing appeal after appeal against its decisions.

So dear Government, if one of your suppliers isn't performing well, then get rid of them! If you don't you'll find your harsh JSA measures will unfairly penalise the genuinely ill who were unable to make ATOS understand the complexities of their condition in the 30 minutes in which they were 'assessed'.

NICE loses power to save Government from hostile headlines?

There has been mixed reaction to the news that NICE is losing its power to reject new drugs that it thinks do not show value for money. The change, announced last week, means that NICE (the National Institute for health and Clinical Excellence) will still exist but its power will be much curtailed - it can provide advice but it will no longer control the NHS drugs purse.

Initial reaction is that this might be a good idea. NICE has long been the ogre of the tabloids as there is a real human cost behind every drug that it says the NHS will not fund. Especially as these drugs have been proven by pharmaceutical companies to have some benefit, it's just that NICE thinks the benefit is minimal compared to the price demanded by its manufacturers.

But although NICE might have been sidelined, there is still no more money for the NHS. In fact despite the coalition honouring its promise to give a real-term increase to the NHS purse, the NHS is actually facing a tightening of its budget as it faces future increases of only 0.8% a year compared to a previous average increase of 4% a year.

So NICE's powers might be gone, but the rationing of drugs is still a reality that the NHS must face. Andrew Lansley, the health secretary, has outlined plans for the responsibility for deciding if a drug is of value to be transferred to local PCTs. This responsibility will then ultimately be handed over to GP consortium']s if Lansley NHS reforms are passed.

The abolition of NICE will clearly exacerbate the problem of the postcode lottery - whereby someone living in one borough will access drugs, and often enjoy a longer life expectancy, than someone in another borough. This may well cause nasty tabloid headlines but local restrictions won't cause quite the hostility towards the Government that a nationwide ban has done in the past. Mike Hobday, the head of policy for MacMillan Cancer Support hints that the negative public portrayal of NICE had a hand in its downfall when he said: "NICE has too often misread the public mood in rejecting clinically effective drugs for rare cancers".

And the Government has already hedged its bets when it comes to cancer, the most emotive and political of all health problems, by promising a stand-alone cancer drug fund that patients can apply to if their local NHS won't fund a particular treatment.

Drug rationing is an inevitability of the NHS, as are the hostile headlines it creates, and drug restrictions will continue to be enforced whether NICE controls the purse or 152 local bureaucrats do instead. So the reduction of NICE's powers may well turn out to be a smokes and mirrors exercise to avoid the public recognising the true funding problems the NHS will face over the coming decade.

The proposed changes to ESA will fail those with incurable illnesses

Last week major changes were announced to disability benefits as part of the Coalition's Spending Review. I didn't blog on it immediately as I wanted time to think through their implications.

The Government intends to limit Employment Support Allowance (ESA) to one year for those who are in the Working Group category. This category is for those people that are deemed able to work if they are given the right support to find a job appropriate for their disability or illness. ESA remains unlimited for those disabled people placed in the Support Group category who are deemed too ill to ever return to the work place. So in theory I guess the Government thinks that those in the Support Group are the vulnerable people it has pledged to protect, and those placed in the Working Group category would benefit from the tough love of a time-limited benefit as it would provide them with an incentive to get back into work.

On initial thought this seems reasonable. I am a person who, though I've had to grudgingly admit I've become less and less able as the years have gone on, firmly believes in the power of work. I've worked all my life since I was sixteen taking on a Sunday job through my A-levels, and part-time and holiday work during University.  Once in the work place full-time I negotiated a four-day week when five days became too tiring. Later, when even those four days became too much, I retrained as a journalist so I could freelance from home. Eventually just before my 29th birthday I realised my desire to be self-sufficient was finally over, I could no longer manage even a part-time job from home. 

So I'm writing this as a firm believer that disabled people will get more from life working than not working and that my personal ambition to work gave me a reason to be healthy and comply with my lengthy, daily medical regime. But it's also strange to write that I'm glad that, when it comes to claiming benefits, I have an illness that will kill me. I was lucky enough to be able to afford to retrain so that I could work from home since 2007. This meant that when I finally had to stop working my lung function statistics had dropped so low it was impossible to dispute how serious my illness has now become and that my death will be a direct result of having Cystic Fibrosis (unless of course I get run over by a bus!). Because when I finally had to turn to the State and ask for help, that help was there for me.

But the proposed changes to the ESA system will not work for those with long-term ill health and incurable illnesses because it creates a health-lottery, even between people with the same illness, as to who will get life-time financial support on ESA and who will miss out.

Someone who is eligible for ESA will receive the payment either based on his or her National Insurance contributions or, if they haven’t contributed enough NI, on their income if it’s deemed low enough. The change the Government has outlined in the Spending Review is to time limit how long disabled claimants can claim contributions-based ESA. This ESA change is modelled on Job Seeker's Allowance. With that you are allowed six months of contributions-based JSA before being moved onto income-based JSA. This means that if you live with a partner who is in work or if you have savings over £16,000 then you will not receive any JSA at all. This rule has now been applied to ESA claimants in the Work Group, but with claimants allowed a full year of contribution-based ESA.

As more details haven’t yet been published on the criteria used to assess when someone will be eligible for more contributions-based ESA after their first initial year has expired, I can only presume that the rules on whether you’ve made enough National Insurance contributions to qualify for ESA are the same as for JSA. With the latter, the Government looks at the last two tax years of your National Insurance contributions to see if you qualify for contribution-based JSA. You need to have been in work for that period, earning more than £97 a week, and “generally, self-employed contributions will not help you qualify for contribution-based Jobseeker’s Allowance”.

But this change to ESA has created a massive loophole for those with long-term illnesses. I’ll take Cystic Fibrosis (CF) as an example as I know the illness so well. It presents itself with differing severity depending on the patient. Some lucky few can work into their forties, some die in their early twenties. But it’s a fluctuating illness meaning that overall although someone with CF won’t get better they might be very ill for a few months or a year and then go on to experience a more stable pattern of illness. So it's feasible that someone with CF who is in work will have to stop working as their illness has taken a turn for the worse, and be put on ESA in the Working Group category - although their health is bad it may be conceivable they could work again if they are young enough and their lung disease not too severe.

After a year spent on ESA they will be forced back into the work place, where after a few months working they may find their health has worsened again, proving to themselves and their doctors that, if they wish for any stability in their health, then their body is no longer strong enough to maintain a job.

So what happens then? They’ve used up their contributions-based ESA in their initial year of ill health but haven’t been able to work for long enough to build up their NI contributions to be entitled to claim contributions-based ESA again. This means that they effectively miss out on years of ESA payments because they had the wrong severity of illness at the wrong time of their life. So it is feasible you could have two people with CF, both unable to work over a five-year period, but one who can claim £24,960 (based on five years on contribution-based ESA in the Support Group) and one who can only claim £4,732 (based on one year contribution-based ESA in the Working Group). This gap in benefit received would just carry on widening the longer each one lived.

It seems to me that the Government is asking people with incurable illnesses to work themselves to sheer exhaustion, and possible irreversible poor health, before claiming ESA, as it seems contributions-based ESA can’t be claimed twice in a two-year period. So if you do put in a claim for ESA you’ve got to do so in the knowledge that either you’re so ill you’ll be put in the support category immediately or be confident that after a year off you can resume working for a lengthy period of time.

The ongoing furore over the controversial Working Capability Assessment test used to decide eligibility for ESA has proven that the Government cannot understand and respond to the fluctuating nature of serious, incurable illnesses, and this change to ESA just reiterates that.

Unfortunately uncertainty is the ruling factor of an incurable illness. People with such illnesses have to have the strength to get out of bed every day and plan a life with an illness that they know will one day kill them or make them severely disabled - they are just not sure when. These are the very vulnerable people the Government has pledged to protect, but instead they are introducing even greater financial uncertainty into their life and an unfair system that will offer a lifetime's support to some disabled people who have a history of working and yet not to others with exactly the same health-problem.

Just how secure is the ring-fence around NHS funding?

We've all been told since the election that
NHS funds are going to be protected and more often than not we breathe a sigh of relief and conversations move on to think about areas such as defence, policing and justice which are under scrutiny. But should we just accept what we are told about NHS funding?

Looking into the figures more, it looks like belt-tightening is going to hit the NHS significantly. The King's Fund, a think tank focusing on health, has written a great blog post about this very subject, I'm not going to replicate it but just draw out some of its most interesting points.

It argues that in the past the NHS budget has increased by 6 per cent on average, but going forward that looks more likely to be reduced to a 1 per cent increase. In addition, the baseline on which to measure an increase has been reduced. In the 2007 Comprehensive Spending Review, spending for 2010/2011 was projected to be £109.8 billion. By 2009 expected spending for this period was reduced to £105.8 billion. Its always easier to find an 'increase' in funding for 2012, if the last year's funding is £4 billion less than demanded. In short, with these increases, the NHS can only do all that it currently does if there is no extra demand on its services. And that seems highly unlikely.

Ignoring the fact that we are facing an increasingly old and obese population, the real concern for me is the reduction in social care spending. There are suggestions that £400 million of NHS funding could be transferred to social care spending, although we'll have to wait until tomorrow's Spending Review to see if that is confirmed. Not only would that mean that in reality the NHS will lose a chunk of its money, but in addition, the institute for Fiscal Studies expect local authorities to lose 33 per cent of funding by 2014/2015.  It's clear that if social funding is heavily reduced - meaning that elderly people and those with long-term health conditions have community care removed - the pressure on hospitals will be immense, as admissions creep up and patients stay in hospital for longer as care they would normally receive at home is removed.

This is really false economics. In July this year the Nuffield trust said unplanned emergency hospital admissions had increased by 12 per cent since 2004, at a cost of £330 million per year.  Speaking at the time, Nuffield Trust director Dr Jennifer Dixon said: "Reversing this unsustainable rise in emergency admissions must be the number one priority for the NHS - any reform to the health service that does not tackle this will fail." So you can see that a decline in local social care funding will have a direct impact on the NHS, which won't have its funding increased in line with the rising cost of the problem.

And some of the fall-out is already being seen. NHS Warwickshire has delayed IVF treatment until next April to ensure it doesn't overspend its budget. It has also postponed hip, knee and shoulder replacements and cataract operations. It is unacceptable that some Trusts see the best way to balance books as limiting what treatment is available year-round. It basically means that there are good times of the year to fall ill and bad times - and I would hate to be the surgeon trying to work out how best to get through a six month back-log of operations. How convenient that Health secretary Andrew Lansley abolished NHS waiting lists earlier this year.

I appreciate that there is not an endless pot of Government money and that spending reductions have to be found somewhere - but it seems pure political game play to ring-fence the very emotive issue of the NHS, and yet allow such significant cuts to areas that will directly increase the demands on the NHS along with how efficiently its money is spent. Like those people who live in the NHS Warwickshire catchment area, just pray you don't get the wrong type of illness at the wrong time of year, otherwise you could experience first-hand how weakly constructed the Government's NHS ring-fence really is.

NHS should fight back against profiteering drug companies

Antibiotics are beginning to fail. For someone completely dependent on antibiotics every day (3 different types daily and a few administered directly into my veins every couple of months) this worries me.

There are already a few strains of CF bugs that are resistant to most antibiotics - they are the true bogeymen of the CF world, talked about in hushed tones - and the common chest infection that most CF people have, pseudomonas, shows on and off resistance to the usual antibiotics.

But even I, someone who is more interested in antibiotic resistance than the average member of the population, was shocked to read recently that there have only been two new classes of antibiotics invented in the LAST THIRTY YEARS.

We should all be worried - infections are a bit like freedom fighters, they've got nothing to lose, everything to win and are highly proficient at adapting and resisting any of the tactics we use to try and kill them. And to be frank we've barely varied our tactics since 1980.

David Brennan, Chief Exec of big drug company Astra Zeneca has called upon the public sector to work with it to help find a way to solve the problem of antibiotic resistance. This is because drug companies see little value to their shareholders in spending money creating new antibiotics because the speed at which infections become resistant to them does not make it a worthwhile investment, regardless of the human benefit.

A spokesman for Astra Zeneca was quoted as saying: ""If we think [a treatment is] not commercially viable, we can give it to somebody in the public sector who is willing to spend money to develop it."

But to me this statement seems very one-sided. Drug companies make vast profits from the NHS - just look at the controversy surrounding GlaxoSmithKline's 10 per cent profit increase on the back of the swine flu panic. Plus their patent protection on drugs allows them to keep the cost of purchase high for a substantial period of time before they are legally obliged to divulge drug ingredients to allow cheaper, non-brand versions of the drug to be created.

A commercial approach to medicine works if profit proves an effective driver to creating new treatments. But if a focus on profit also means that vital drug treatments do not receive investment then to me something is clearly wrong with the system.

It has bothered me for some time that the NHS doesn't seem to use its huge buying power to exert demands upon drug companies. It must be one of the biggest, if not the biggest unified drug purchaser in the world, and it seems crazy that pharmaceutical companies are selling drugs to our Government at a vast profit but then also telling the Government to spend its own money creating cures for diseases that are unattractive to pharmaceutical shareholders.

I wonder what Astra Zeneca's reaction would be if the NHS said it would only buy its leading antibiotics for the whole of the UK population if they invested a proportion of the resulting profit in creating new antibiotics? Negotiation and bartering are the key to any purchasing agreement and at the moment it seems the Government is held to ransom over the threat of allowing its citizens to develop untreatable infections, when it should actually be using its huge monetary resources to ensure it holds the advantage over drug companies.

If we are forced to take a commercial approach to drug treatments, then the Government should quickly learn that two can play that game.

Chris Grayling and his mysterious employment figures

The Government is always keen for school children to improve their basic numeracy skills but don't seem so great at working out sums themselves.

Here's an interesting conundrum.

Speaking at the Tory party conference, Work and Pensions Minister, Chris Grayling said he hoped that about half of those claiming incapacity benefit can be helped back into work. That means from a total of 2.5 million currently claiming incapacity benefit, he is hoping about 1.25million people will be moved back into work.

The Office for Budget Responsibility (OBR) is expecting 2 million jobs to be created in the next five years. This figure is already considered to be highly optimistic. In comparison, after the recession of 1980/81 it took seven years to create 2 million jobs. Following the 1991/1992 recession it took nine and a half years to create 2 million jobs. And  the average annual GDP growth rate after these previous recessions was 3.6% and 3.2% respectively, which is significantly higher than the current 2.5% GDP growth rate the OBR has predicted.

But for argument's sake, let's say that the OBR is right in its predictions - it still means that Mr Grayling expects those who have been claiming incapacity benefit to acquire 62.5% of these newly created jobs.

I've tried to find some figures on an employer's attitude to taking on disabled people or the long-term ill, but do let me know if you're aware of any more recent studies. In a 2004 study that looked at 1000 small business owners, 45% said they thought it would be 'quite difficult/very difficult' to employ a disabled person. I appreciate it's hard to extrapolate this research out into the wider employment market, but if this attitude was found to be genuinely indicative of the overall employer attitude across the nation, that would mean that of the potential 2 million new jobs the Government hopes will be created, the disabled or those on incapacity benefit would be considered for about 55 % of these positions - or 1.1million of the new jobs. In short, that means someone on incapacity benefit would have to be appointed for every single job available from employers who have a positive attitude towards employing the long-term ill - and there would still be 150,000 jobs too few.

To me it seems very unlikely that someone who has been off sick for a significant period of time, or is disabled with special work-place requirements or has a history of mental health issues will find themselves at the top of the pile when it comes to finding work.

So, Mr Grayling, where did you get your figure from? If I've done my sums wrong then please do correct me.

Or did you actually mean, you expect 1.25million people to be moved from Incapacity benefit onto Job Seeker's Allowance and left alone to figure out how best to get work, without any of the specialist support that the new Employment Support Allowance promises the ill or disabled?

Lessons from the Government: Get rid of people that don't agree with you

I haven't written all week and I'm dead tired. On some new drug that means you pretty much can't sleep even though you want to. Yeah, legal version of speed I guess. So I've mostly been a zombie this week.

Anyhow I haven't posted all week which is a bad habit to sleep into, wow, that was a Freudian slip, I meant fall into. Obviously my fingers are now dreaming of sleep.

Another bad habit is always finding things to bitch about - so please do send me suggestions for positive health stories so I can try to balance the scales a little. But until that point I'm just going to post a list of the 177 quangos that the Government is considering axing.

The ones that are directly relevant to this blog are:

Disability Employment Advisory Committee
Disability Living/Attendance Allowance Advisory Board
Disabled Persons' Transport Advisory Committee

Independent Living Fund

Gene Therapy Advisory Committee

I've linked to what each one does.  The first two listed give independent advice to the Government on how best to help disabled people back into work and eligibility for Disability Living Allowance.

The Government has been getting plenty of stick over the medical test used to assess eligibility for Employment Support Allowance, basically telling people to go back to work when they clearly aren't well enough to do so. And in its emergency budget earlier this year the Government announced measures to reassess all DLA claimants from 2013, a measure that disablity groups are already expressing concern about.

So I must say I'm very impressed with the tactics behind this latest 'money saving' venture. I wish I could just make people disappear who don't agree with something I've said. Unfortunately I'm not the Government, so I can't use cost-cutting excuses as a reason to disband committees that might have something to say about its continual policy attacks on the disabled community. I'ts really rather ingenious on the part of this wonderful Government.

And that's all folks. I think I need to S L E E P.

A progressive government: Schizophrenic man who has just spent 6 months in mental institute told to find work

I heard of this story yesterday via Twitter (yes I am a convert) and I thought it worth sharing - mainly because it only happened this week and it shows that the much-derided medical test for ESA is affecting real, vulnerable people now - it's not just a dry political argument with which to bandy insults at Prime Minister's Question Time.

A man with Schizophrenia has just been taken off Employment Support Allowance (ESA) and put onto Job Seeker's Allowance. Earlier this year he was discharged from a mental institution where he had spent the previous six months. He is now living in residential accommodation, which in itself shows he is not yet healthy enough to live a fully independent lifestyle. He has also not worked for 10 years.

The real shock behind this story is the way in which this change has happened. He was asked to attend a medical test which is administered by a company called ATOS, who have the contract from the Government's Work and Pension department. A person has to score over 15 points to be deemed eligible for some form of ESA. This man scored 0. Yes, you read that correctly, ZERO. As he has a clear diagnosis of a severe mental illness this score tells me either that ATOS doesn't recognise the debilitating nature of a mental illness or its test criteria are entirely inadequate for unearthing the effects of mental illness on a person's capacity to work.

Either way the man has been moved from ESA straight onto JSA - he has not even been moved to the lower rate of ESA which would mean he would have been given greater support on how to go about preparing himself for work and identifying which employers are accepting of a long history of mental ill-health and unemployment. How is a job centre employee with basic training on how to get the average Joe back into work going to know how to deal with a schizophrenic not yet capable of fully independent living?

I'm beginning to warm to the Work and Pensions minister Ian Duncan Smith, he seems to be intriguingly genuine in his desire to reform our benefits system so that, in his words, people don't get left behind. And clearly the man of our story has been left to languish for ten years on incapacity benefit. But it's obvious the current welfare reduction drive is more focused on reducing the cost of welfare than exercising any common sense or, dare I say it, empathy towards those with long-term ill health.

Rumours are going round Twitter that Ian Duncan Smith has threatened to resign 12 times since taking office due to consistent, unyielding clashes with the Treasury. With stories such as this schizophrenic man surfacing, it seems clear that the battle is far from over between government members who just wish to reduce the cost of welfare and those who wish to reform welfare to help those who are on it achieve a better life.

I can only hope that the schizophrenic man in question appeals the decision so that at the very least he is awarded lower rate ESA and given proper support in finding work. If not, he clearly has very little chance of ever gaining employment and will be left to live in even greater poverty than before. That's a 'progressive' government for you.

Will toddlers on anti-psychotic drugs be the future for the new NHS?

Great article I read last week in the New York Times about the increasingly prevalent use of psychotic drugs to treat toddlers. Yes you read that right. An 18 month old was put on an anti-psychotic drug for throwing temper tantrums. And this isn't an isolated case.

Admittedly, this is America, where the use of mental health drugs on children is much more widely practicised, and it's easy to read this piece and say 'Thank God that's not our country'. BUT what really struck me in this piece, and which should act as a harbinger for the UK, is that those who are poorer in the US are more likely to be put straight onto a mental health drug rather than time be taken to provide talking therapies or more in-depth diagnoses.

And as our country's politicians are considering changes to the NHS that could see the creation of a two-tier health system - one level of service for those who can pay and another level for those who cannot - such stories as this should act as both a case study and a warning.

Last December a US research team found that those kids on Medicaid, the health cover provided by the US state for families on low incomes, were four times more likely to be given antipsychotic medication than children who were privately insured. The reasons given by the researchers for this disparity were partly because Medicaid often pays less for counselling than private insurers do and because the waiting time to see a psychiatrist who accepted Medicaid patients was so long that medication felt like a better option.

Turning back to the UK and the great charity Rethink found that only 1 in 6 mental health patients received all the treatments recommended by NICE, with over half of people with schizophrenia or bipolar disorder NOT receiving psychological therapies (such as talking to someone) as recommended.

It seems the UK already has a problem providing access to non-medication treatment for mental health issues, and I'd hate to see this worsen due to cost implications and waiting lists. But for a government that wishes to hand over funds to GPs and effectively privatise hospitals allowing them to seek income from the NHS or from private patients at a ratio they chose (creating long waiting lists for NHS patients and budget-conscious GPs who may feel compelled to prescribe the cheapest option) I just can't see how those who are poorer in society will have a chance to choose their mental health treatments.

In the future, I'd hate to read about UK toddlers heavily medicated on anti-psychotic drugs but I wouldn't be surprised at all.

How belief in good luck brings us good luck

So if August was measured in terms of bad luck than I think I'd be up there for some kind of award (a few giant buckets of gin and tonic would be a suitable prize if anyone wants to send it my way). I don't need to tell you what's been going wrong, mainly because its September 1st and I've decided that August is the month of bad luck and September the month of good luck.

But as my boyfriend points out this concept of good luck and bad luck makes no sense to someone, who like me, purports to be rational. So it got me thinking whether our concepts of fate, luck and the belief that life can't always stay bad is an inbuilt coping mechanism we deploy in bad times to create our own light at the end of the tunnel?

A recent psychological survey found that superstition improved performance across four key areas: memory, sporting tasks, intelligence test and motor dexterity. For example 41 students were told to bring a lucky charm with them and performed a memory task either with the lucky charm to hand or when it had been removed from the room.  Those with their lucky charm performed better at the memory task than those without it.

So I suppose it shows that if we believe we can do something than we are more likely to be able to achieve it. And 'luck' seems to be our way of externalising our own self-belief, allowing those with less confidence to still achieve their dreams. Perhaps, conversely, it also means that bad luck does not 'belong' to us either, and therefore is something we can 'shake off' and move on from.

So lets see if September does bring me better luck. I suppose the belief that something has to change for me, that such bad luck can't continue, is actually my own way of not giving up, of not falling into a mire of doubt and inactivity.

Anyhow, I might write more on this at another date and tie it back into health issues and the NHS. But for now I'll sign off as I'm off to hospital (hopefully just as a day patient) to start some intravenous antibiotics tomorrow (ivs) and fancy getting an early night. 

Have you been consulted over the proposed changes to YOUR NHS?

I promised to write regular updates on the planned changes to the NHS so here we are.

Unison announced this week that it's planning legal action against the Government's plans to give a vast chunk of the NHS budget to GPs (abolishing PCTs) and effectively privatise hospitals by turning them into businesses that compete for money from GPs and can treat an unlimited number of private patients.

The coverage unions get from the media is undoubtedly overwhelmingly negative, as the age in which they were championed has been replaced by a society modelled on individual rather than community spirit. But it's this very shift in how our society thinks about itself that makes unions so vital as their strikes and legal actions, act as a worthy balance against Government plans that are often focused on profits over community.

Unison believes that the Government's consultation about its NHS white paper, which it is legally obliged to undertake, is unlawful. This is because Department of Health has already indicated that its plans are non-negotiable making its consultation irrelevant and unable to effect change. The Guardian reports that the day after the white paper was released in July: "Sir David Nicholson, the NHS chief executive, wrote to NHS executives telling them to start work on the reforms "immediately".

What I didn't realise is that the NHS has a constitution of which the State's own website says: "No Government will be able to change the Constitution, without the full involvement of staff, patients and the public,"

Having read through the constitution, it does seem unbelievable that such sweeping changes can just be unilaterally imposed, especially as the more radical suggestions were not even mentioned in either the Tory or the Lib Dem election manifestos.

As an example, one of it's patient rights it outlined is: "The right to expect your local NHS to assess the health requirements of the local community and to commission and put in place the services to meet those needs". It goes on to say that this is the "responsibility of your local PCT". However as the Government plans to abolish PCTs it is clear that this right will be altered, at least in terms of who will be responsible for implementing it.

Moreover as of April 1st 2010, there was a new patient right which outlined that each NHS patient must be able to see a consultant within 18 weeks from referral by his or her GP. This right has already been abolished when Health Secretary Andrew Lansley announced in July that waiting times were being axed as they were too bureaucratic.

So bravo to Unison for highlighting our right to question these NHS changes. If this radical white paper is the best way forward for our national NHS then why not explain the changes and the benefits and let doctors, nurses and the public have proper involvement in whether they should be implemented?

Has anyone yet been consulted over these changes? Have you seen a single poster, email, or TV appeal asking for your opinions? Fingers crossed this legal challenge slows down the implementation process so that we all have a chance to think about and campaign for an NHS that we all want, not just one that works the best for the Treasury coffers.

How to make your voice heard about benefits

Just found a great disability charity (www.lcdisability.org) that also campaigns for disabled people and found out some great info - the government is inviting individual responses and experiences to: the Work Capability Assessment used to determine if someone is eligible for ESA; amendments to ESA in general and ideas for overall changes to the benefits system.

I've posted more info and links below. It might take a bit of time but we live in a democracy and should take every available opportunity to make our opinions heard, especially in such austere times.

Please pass on to anyone currently in receipt of ESA or any disabled benefits at all - and anyone, disabled or not, can provide ideas about the benefits system.

I'll post my response on my blog once I've sent my ideas and opinions.

WCA
For the first five years of ESA the Government has to hold an independent review of the test used (the Work Capability Assessment). They have appointed Professor Malcolm Harrington to carry out this year’s review. He is asking for people to share their experiences of the current test for ESA. You can find out more and respond by visiting www.dwp.gov.uk/docs/work-cap-ass-call-for-evidence.pdf . The deadline for responding is 10th September 2010.

ESA in general
To introduce proposed changes to the test for ESA (the Work Capability Assessment) the Government needs to introduce a new Statutory Instrument (this is a type of legislation). The Social Security Advisory Committee looks at any new Statutory Instrument related to benefits and they are holding a consultation on the proposed changes to the test for ESA. If you want to read more and respond to the proposed changes please visit www.ssac.org.uk/press/press23.asp . The deadline for responding is 10th September 2010.

Benefits overall
The Government are currently looking at changing the benefits system and are currently asking people for their ideas on what they think the benefits system should look like. If you want to find out more and submit your own ideas then please visit www.dwp.gov.uk/consultations/2010/21st-century-welfare . The deadline for responding is 1st October 2010.

Behind the media furore lies the real cost of disability benefit fraud

It's a bad time to be disabled.

The populist way to solve the massive UK deficit, in large part due to multiple bank bail-outs, is to reduce the welfare budget. And attention has turned itself time and again to the cost of supporting disabled people with the media often misrepresenting or even falsely presenting the facts.

In a recent Telegraph article about the intended government use of credit agency Experian to weed out fraudulent benefit claimants, the paper stated: "The agencies will get a “bounty” payment for each fraudster they identify under government plans to cut the £5.2billion annual fraud bill". Except that this figure is not correct.

When publishing data on benefit monies, the Government bundles erroneous payments and fraudulent payments into one headline figure. In fact, last year the cost of fraud  was £1.5 billion compared to payments made due to error of £3.7 billion. So why the media misrepresentation?

The Sun similarly misreported benefits statistics on Monday. In its campaign against benefit scroungers (surely a campaign against overtly risky banking practices would save this country more money in the long-run) it highlighted the fact that almost 900,000 people have claimed incapacity benefits for over a decade. It went on to say: "A scheme introduced in 2008 by the previous government has so far found three-quarters of those claiming incapacity benefit were able to work". The scheme it alludes to is the Employment Support Allowance medical test that has been heavily criticised by disabled charities, doctors and even the Government for passing too many claimants as fit to work when they are clearly not - one extreme example was telling a man with terminal lung cancer to go back to work when he only had five months left to live.

The Government itself  is surprised at the volume of people declared fit to work by the new ESA medical test and has asked for an urgent review. Labour was previously expecting to cut the incapacity benefit recipients by 20% but instead this new test is so inflexible and basic that more than 60 per cent are being declared fit to work - three times the initial estimate.


The Sun reported none of the controversy surrounding this new test, clearly using the statistics to persuade the average reader that most long-term sick are faking it. Moreover, the paper talks about the cost to the taxpayer but makes no allowance for the fact that many disabled people who find themselves on long-term benefits have worked at some point during their life and contributed taxes like everyone else.

In fact government figures published by the House of Commons Work and Pensions committee suggest that benefit fraud has REDUCED since 2001 from 2.2 per cent to 0.8 per cent between 2008-2009 (the most recent year for which statistics are available). This fraud figure represents housing benefit, Disability Living Allowance, pension credit and carers' and attendance allowance. It does not include data for fraudulent claims for ESA, incapacity benefit, Job Seeker's or Income Support as the Government had not been able to provide statistics for publication! Extrapolating out from this statistic it is fair to say that out of 889,000 long-term disability claimants only 7,192 are tricking the system. Or to put it another way of the estimated £460 million spent each year on incapacity benefit for the 889,000 long-term sick, only £3,600,000 was misspent. I bet you'll never find that statistic printed in The Sun.

The harsh truth isn't that the long-term sick are scrounging benefits but that there are actually many serious illnesses that are incurable and highly debilitating. Medical advances often mean it's possible to keep someone alive but not keep them well enough to allow them to work.

So hiding behind all this anger at disabled benefits is this: Does society want to pay out money to support disabled people whom it clearly sees as no benefit to society as they are unable to pay taxes? Perhaps it's easier for a Government to complain about people tricking the system than to admit that it no longer wishes to pick up the bill for caring for the sick?

Mind/body dualism at heart of lack of sympathy for mental illness

I read a really great story today about a new MRI brain scan that seems able to accurately diagnose Autism Spectrum Disorder, which covers illnesses such as severe autism right through to Asperger's syndrome. It's been all over the news so you can read the details in depth yourself, but what great news it is!
A new way of diagnosing any illness is great but even more so for a mental illness. Having a hidden illness myself I know what it's like for people not to think I'm genuinely disabled or in need of help. I rarely ever get offered a seat on a bus even if I'm panting and gasping for breath.

But it's so much worse for those who have a mental illness. Right through Western philosophy, from Descartes infamous, "I think therefore I am", we as humans have tended to think of our brain and the way we think as separate from our body. This dualism is right at the heart of why we find it so hard to understand and sympathise with mental illness. "I can't work many hours because my lungs don't work" is much easier to empathise with than, "I find work difficult because I find social interaction impossible." I can't make my lungs work harder but it seems impossible to argue that you can't think differently.

So this news, that there are clear differences in the brain scans of those with autism and those without, gives society a chance to stop and rethink how they view mental illness. ASD is the result, at least in part, of a physical problem in just another one of the body's organs, the brain.

And for those who suffer from ASD they can have a better understanding of their condition and can start to find tools to cope with situations they find hard. Rather than feel stupid or a social outcast they can view themselves as just someone else in society who has a disability and can start to work to overcome the limitations it presents.

Drug companies rubbing their hands with glee at the 'discovery' of three new mental illnesses?

This week the American Psychiatric Association (APA) announced the updated fifth edition of their Diagnostic and Statistical Manual of Mental Disorders (DSM) and it appears they have identified three new illnesses: "mixed anxiety depression, psychosis risk syndrome and temper dysregulation disorder."

My only experience with mental illness is as follows: I was having a pretty shit day because I couldn't breath. I think feeling miserable about that is a pretty bog-standard normal reaction. I happened to be going to the doctors to update my prescription list and he said I looked rather down and did I think I was depressed and started asking me if I ever felt low or cried for no reason. Which made me cry.

So there he is thinking I'm depressed when actually I was only crying because I found the whole situation confusing and I was scared that maybe I was depressed and hadn't noticed it, which confused me even more. Anyway I turned down his suggestion of some mild anti-depressants but it completely shocked me at the ease that these drugs can be obtained. I mean, Jesus, girls cry all the time, it's just our way of venting frustration.

So of the new illnesses outlined in the APAs' manual lets just think about psychosis risk syndrome. By the psychiatric association's own admission this isn't even an illness. Its basically saying to someone they're at risk of developing a mental illness because they're experiencing abrupt personality changes. And from experience, someone telling you you might be mentally ill is incredibly stressful, and truly makes you question your sanity. There is a great article outlining the effects of over-diagnosis here.

So what's the point of the APA's manual? Well give this some thought:
"The US Senate Finance Committee has investigated at least 16 APA psychiatrists over their undisclosed financial ties to drug companies, including the APA’s own President, Alan Schatzberg who has stepped down as principal investigator of a National Institute of Health (NIH) funded study after months of Congressional scrutiny into his ties to the drug he was studying.  He was found to have actually initiated the patent application of the drug he was studying to “treat psychotic depression.” You can read more about this here.

Another investigation published in April last year by people working for three major US universities, including Harvard medical school, found :
"Ninety percent of the authors of 3 major clinical practice guidelines in psychiatry had financial ties to companies that manufacture drugs which were explicitly or implicitly identified in the guidelines as recommended therapies for the respective mental illnesses. None of the financial associations of the authors were disclosed in the clinical practice guidelines."

Drug companies make shed loads from selling drugs. In 2007 it was estimated that drug company GlaxoSmithKline made £1 billion per year in profit from anti-depressant Seroxat. According to Forbes, at its peak, drug company Eli Lilly made $3 billion dolllar profits from Prozac in 2000 (profits fell subsequently when it lost its patent protection).

So the more illnesses that can be discovered, the more drugs can be invented to cure it. And more over, as the drop in profit from Prozac shows, there is a continual need for new drugs to be created as a drug company's patent only lasts a prescribed period of time before it must give up its secrets to a generic drug maker.

No wonder there is a concern over the conflict of interest between APA members and drug companies.

And although it's a US manual the DSM is used worldwide as a basis for diagnosis, research and medical education. I'm not saying that your local GP has a conspiracy going with GSK but a recent study by Rethink reveals that over two-thirds of GP's don't feel equipped to take responsibility for mental health - perhaps indicating they might rely on the APA's mental health 'bible' more than they should?

Patients are being offered antidressants or other drugs for mental illness when they're normally at they're lowest ebb, and most likely to doubt their own opinions, especially when they conflict with those of a doctor. But don't feel that drugs are your only option. Ask about therapy, counselling, the documented benefits of exercise in helping mental illness. Rest and exercise may create zero profit for a drug company but they can be fantastically valuable to a patient.

Getting people healthy - the carrot or the stick?

Many years ago, a guy I'd been dating for a couple of weeks called me up feeling really down and after much cajoling eventually told me he felt he was getting fat and it was making him miserable. Ever the one to try and be helpful, I told him that as I had to get up every morning at about 7am to do an hour-long medical regime, why didn't I give him a daily wake-up call so he could go for an hour's run every morning and he'd soon lose the weight?

That was the last phone call we ever had together. It turns out tough love wasn't what he was looking for.

So this week the nation read with horror about the country's fattest woman eating herself to death. It was so vaudeville grotesque that it embedded itself in the nation's consciousness.  A woman so desperate for cake she died for it?

The woman in question had had a stomach staple operation but still couldn't quit eating fatty food, persuading relatives to smuggle in fish and chips to her hospital bed. So how should society persuade people to take charge of their own health?

A previous blog said that perhaps we're all relying too much on medicine as a quick fix, hoping it will get us better instead of investing in a time-consuming lifestyle change. This is more evident than most with diet habits. Stomach stapling, crash diets, slimming pills are vastly popular despite it being pretty well known across society that to lose weight you need to eat less and exercise more. But my phone call with my ex shows that people just don't want to hear that.

Despite loads of CF mothers complaining that their teenagers are rebelling against doing their meds, I never did. It never crossed my mind. So what made me do two hours of medicine a day without complaining? Well, my parents didn't set it out like it was something I could choose. I go to school, I do my meds, I hang out with my brother. Like everything else, it was just something I did.

Plus in exchange for taking responsibility for my medicine I got to go out and enjoy the fruits of my labour - I got to party (within reason) at house parties, pubs and clubs. So some carrot and some stick. And an understanding that if I wanted to feel healthy I had to put in some work to achieve it.

Some boroughs suggest paying people to lose weight but I'm totally against it. If someone can't envisage the improvement feeling healthier would do to their lives then I can't imagine that just paying someone £10 a week will persuade them to make a permanent life-change to keep the weight off.

But should society go further? Deny operations to those that haven't committed to losing weight, quitting smoking or stopping drinking? So that when money is spent, it makes a difference? The NHS is clearly strapped for cash so perhaps tough love is one way to solve the problem - but will the nation be prepared to listen?

Would you hire a disabled person? Honestly?

So how many people have filled in job application forms and come across questions about your health such as: "How many days have you been sick? How does this reflect your usual level of sickness?" and then the sentence "An offer of appointment will be subject to completion of a health questionnaire."

Under the 1995 Disability Discrimination Act (DDA) it's illegal to discrimate against candidates on the basis of a disability. But why would any company ask such questions if it doesn't have the intention of weeding out the physically weaker amongst it's candidates?

The DDA act has a major loophole that massively works against a disabled person. You're meant to disclose a disability BEFORE you are given a job offer, in theory so that the company knows it can make reasonable adjustments to your condition. If you don't do so then you risk adjustments not being made to suit your disability, or worse, being accussed of misleading your employer about your abilities. But how would you ever know that the employer balked at the thought of hiring someone disabled and turned you down for the position purely because of your illness? Disabled people have to make the decision whether to declare or not to declare. Personally if your illness isn't obvious I recommend keeping quiet. If it is obvious, directly raise the issue in your job interview, even if your employer does not, and make your case for why it won't affect your work.


Recent government proposals have focused on getting people off incapacity benefits and back into work. Ian Duncan Smith talks passionately about not letting people "languish" on incapacity benefit, and wants to work with them to help improve their job prospects.

But let's just acknowledge the white elephant in the room surrounding these proposals. Improving a disabled person's attitude to work is just half of it. Employers also need to change their attitude to disabled people.

A survey carried out in June 2009 for the Institution of Occupational Safety and Health (IOSH) found that 73% of employers would not hire people on Incapacity Benefit (now Employment and Support Allowance) or older people.

Every business needs to make a profit and I suppose an uneducated employer believes that someone with a disability will take more time off sick, complete less work and be overall less productive.

Well as someone who worked very hard for years while living with CF the reality is different:

• I took less time off work for run of the mill illnesses as I didn't want to seem like I was always being ill. 
• Since I was little I've been subject to a very strict medical regime, which when translated to a work environment meant I was incredibly well organised and worked very efficiently.
• I was good at problem solving as I've often had to find ingenious ways to manage my health while out and about (think sitting in a police riot van to use my electric nebuliser when I couldn't find a plug anywhere else) - lateral thinking that is easy transferable and beneficial to a working environment. 
• And crises at work get solved because I've gone through worse things in life - a cool, level head can normally find a way to solve even the biggest cock-ups

Overall many disabled people have an attitude and life skills which bring diversity and strength to a work force. But unless perceptions radically change amongst employers disabled people will continue to face insurmountable barriers when trying to get back into work - work which is hard enough for anyone to find during these weak economic times.

If the government really wants to reduce what it spends on disabled people it must find a way to open the eyes of employers so they become willing to see past their fears and instead recognise the positive aspects an illness can bring.

Can a homemade moussaka make you better?

I was at a hospital appointment yesterday and things seem to be balancing out for me. Last year I was so used to going to hospital and being told that I needed another course of intravenous antibiotics that I'm still surprised when I'm sent home without them. I always pack my bag with my nebuliser, toothbrush and some underwear just in case as I normally go back to my parents for some TLC when I start these drugs- they're so strong they make me feel like shit initially.

So its good to hear that seven months after cutting back on work, although my lungs aren't really working any better at least they aren't constantly getting infected meaning I'm less reliant on hardcore medicine.

There was a great article in the Guardian over the weekend about how best to cope with depression. It's such a common malaise in society, with studies suggesting 20% of the UK's population deal with depression at some point in their life. Yet the rising predilection for prescribing antidepressants doesn't seem to be helping - with only a 50% success rate, and a 25% relapse rate for those that drugs do help.

So my recent hospital appointment and this article got my thinking that perhaps we're all too reliant on medicine alone to get us better, looking for a quick fix when actually we might need a life change.

In the olden days, when there were fewer medical advances, rest, good food and social connections were what pulled many people through. Earlier in the year my mum mentioned to a work colleague that I was pretty ill and the next day a wonderful Greek grandma came to the office looking for her. It was the mother of my mum's boss - dropping off a home-made moussaka to help me get better! I cannot tell you how touched I was.

We're all so busy nowadays, pulled between social commitments, often travelling long distances to meet friends, knowing few people in our streets, technologies that mean we're never quite 'turned off' from the world. We rarely give ourselves time to just rest, recuperate and piece ourselves back together.

I'm on so much medicine at the moment, and believe you me I would never stop taking any of it, but I've learnt the hard way that if you don't recognise your own physical limitations then medicine alone won't do the trick. Illness does inconvenience our lives but the more we build in rest, sunshine and friends the more likely we are to get better more quickly, or, in my case, stay healthier for longer.

NHS funding overhaul will create conflict of interest between public health and private enterprise

Ok so it's taken me a couple of days to respond to Monday's news that the NHS is in for a dramatic shake-up (blame it on the weather, the heatwave wiped me out completely - it's weird to think of myself in the 'vulnerable' group when it comes to things like that).
 
But anyway while we were all busy eating lollies and loving the recent weather, the Government was preparing to launch a white paper called 'Liberating the NHS' that plans to radically alter the way the NHS is funded. It wants to give £80 BILLION directly to GPs to decide how best to spend it on patients, scrapping Patient Care Trusts (PCT) along with it.


I'm not a big fan of PCTs, they have a habit of implementing localised policy that goes against the decisions of NICE, the body governing what drugs and treatment should be available to patients nationwide. Last November I was told by my PCT that I was no longer allowed to be given a nebulised antibiotic called Colomycin as according to old medical guidelines it should only be given in a hospital environment. Except I, along with countless other people with lung conditions, have been taking it at home for two decades. So clearly this sudden decision was one based on saving money.

My GP called the PCT to protest: "Sharon needs easy access to her medicines to be able to concentrate on resting and staying well, not worrying about receiving the drugs she needs". Despite this call, the PCT still said no. (I still get this drug, via hospital, so the NHS has saved no money, the patient has merely been inconvenienced.)

So given that scenario the new plans in principle are an interesting idea. GPs know their patients well and can best decide what treatment they need. However the truth of the matter is that the NHS is still cash-strapped and always will be so my concern is that GPs will instead be faced with a conflict of interest - a patient needs a drug he knows he cannot afford to prescribe. What happens in that scenario? He keeps quiet and offers a cheaper alternative that he knows is less likely to do the job?

The new plans also include a patient being able to choose where to visit a GP, meaning they no longer need to live in their GP's catchment area. But in practice will this be allowed to work in reverse? Perhaps GPs will balance the books by limiting the number of 'expensive' patients they look after, and it's exactly these patients who will be too ill or too busy with time-intensive medical regimes to be able to travel far. It's long been documented how people struggle to find an NHS dentist, will the same soon be said of GPs?

The Government has said hospitals will be encouraged to move outside the NHS to become a "vibrant" industry of social enterprises. Effectively meaning they will need to 'pitch' for money from GPs and that their cap on how much private work they can do will be removed.

The idea is that hospitals will have to become very good at care to ensure they survive, as otherwise GPs won't refer their patients there. But instead they could feasibly cut their prices to lure in patients - meaning those hospitals that achieve less good results could ensure survival by offering services to GPs at prices that reflect this lower quality, in a similar way that lower-rated Universities can offer cheaper tuition fees to attract less well-off students. In addition, waiting lists for NHS patients could soar as hospitals prioritise private patients, who will be unlimited in number. Notably, the health secretary Andrew Lansley already abolished hospital waiting lists.

And there will be no "bail-outs" if a hospital overspends and goes bust. This is completely unacceptable. Social services are provided in a local area to provide access to the care that local people need. If a hospital is failing it should be helped to improve not just be allowed to fail and close down with no thought for the needs of the local community.

And what about patients like me? I never see my GP except for prescription renewals and a common cold. Instead I visit my hospital doctors at least once a month, they decide on my care plan and drug regime and tell the GP what I need. I have no idea how this scenario will be dealt with when GPs are meant to commission hospitals, not the other way round. But it adds to the overall concern towards the Government's plan: it's untested, unpiloted and is meant to be implemented in just 24 months time.

This blog raises a lot of questions I don't know the answer to, but I'm not sure if the Government does either.

Beautiful summer days are all too fleeting for some...

It's a really warm night and it's late. It's meant to be 30 degrees tomorrow and it reminds me of a summer in my early teenage years when the grass was burnt yellow during the whole school holidays, pricking the soles of your feet if you walked barefoot.

Long days of afternoon headaches brought on from drinking beers in the park with good mates, itching skin from too much sunshine with only a cloying smell to prove you bothered with suntan lotion at all.

Summer full of possibilities.

And yet at the back of your mind, as you pack your days full of heat, rarely indoors outside of work hours, you know it'll end. The English summer is so fleeting, days darken, the breeze picks up, the sandals go to the back of the wardrobe.

It's National Transplant week this week. There are currently about 8,000 people waiting on the transplant list. Three people die each day as they couldn't wait any longer.

For the rest, who are waiting for the phone to ring and literally fighting to stay alive so they are still here to answer it, they may have just one final, dark winter stretching ahead of them. Possibilities gone.

Its not nice to think about being an organ donor, it might mean contemplating your own mortality for the first time. But believe me, from someone who's future will at some point depend on a transplant, you couldn't give a better gift.

You can sign up here. It doesn't take long. If its something you've always intended to do but never got round to it, then do it now. Or tomorrow at work instead of making a cup of tea. But make sure you do it.

"Things I once thought unbelievable in my life..."

Listening to 6 Music as I start to write about a new test that may be able to accurately predict the onset of a woman's menopause and suddenly PJ Harvey's voice pulls my attention to her lyrics: "Things I once thought unbelievable in my life have all taken place...."

But rather than it make me think about the benefits of this new medical innovation, it turned my thoughts to the limitations of it.

Iranian doctors believe that by measuring levels of a hormone called Anti-Mullerian Hormone (AMH), they can accurately predict within 4 months when a woman may go through menopause, offering women better control over their fertility and giving them a more informed choice of when to start a family.

As menopause alone is not the only factor limiting a woman's fertility (according to one expert, fertility begins to drop from the age of 28, and by 30 one in three embryos will be genetically flawed), I really can't see the benefits of this test. If anything it just provides a false sense of security, when in fact life is anything but predictable.

When I was growing up in the eighties, there was a lot of talk about finding a genetic cure for CF. Well its now 2010 and there still isn't one. In fact, there isn't a single cure for any genetic illness to date. Thankfully even in my early teens I never pinned my hopes on a cure. I just knew I had to live the life I had available to me in the best way I knew how. This was nevertheless more problematic than it might seem. The life expectancy of CF has never been something to be happy about, but even knowing it is limited doesn't actually mean much as some CF patients die very young while some make it to a pretty decent age and even have children. The variability is massive.

So you end up trying to straddle two life philosophies simultaneously - living life for the moment as well as planning for an unpredictable future. So do you jack in the job you hate to go travelling since life is too short to waste on being miserable? Or stick it out in the hope that it leads to a better job in a year's time which would provide more long-lasting happiness than a two-month jaunt around Thailand? I don't know the answers, just that you always somehow find a solution to the new challenges life throws at you.

So back to the issue of fertility. It's a precious thing, and it becomes even more precious as you get older. Innumerous medical tests can't actually come close to predicting the unexpected nature of life. Meeting the right person, getting pregnant from a one-night stand, losing a stable income, getting a great new job, losing a parent and a future loving grandparent, getting cancer, IVF that works, IVF that fails. All this stuff of life is just as important as how many eggs you have left. Perhaps having a baby should be more about what you'd need to sacrifice at any given moment to have a child and whether that sacrifice is worth it for you in comparison to a potential future without children. (And, as an aside, surely society would be better off investing in flexible working patterns and innovative child care solutions to reduce the sacrifice a woman must make when it comes to employment prospects, rather than focus on ever-new ways to extend a woman's fertility beyond its natural peak?).

Even as someone so dependent on medicine to stay alive, for me science alone has never been able to deal with the real difficulties of living. And it brings me back to PJ Harvey's lyric: information and imagination alone won't let you create a future. The real life-affirming question is: "What do you choose?"

Dying man deemed fit to work - an omen for incapacity benefit cuts?

A couple of years ago I went on a date with a guy who declared over dinner that:
"As long as you've got both legs there is no reason why anyone can't run the marathon".
Before we'd even chosen dessert, I realised this wasn't the man for me - he wasn't really going to 'get' the whole Cystic Fibrosis thing.

Yesterday the Government announced further measures against disability benefits, looking to cut back on those who receive Incapacity benefit, or the Employment Support Allowance (ESA) that has replaced it, and move them back into work. My concern is that those who reassess claimants may well turn out to be like my 'Marathon man' date - and just not get the huge impact hidden illnesses have on a person's everyday capacity to function. Lord knows, I never thought there would come a day when I looked at a single flight of stairs with such trepidation, but what is easy for the well person can literally feel like a mountain to climb for the ill.


The Citizens advice bureau released a report in March this year, outlining their concerns surrounding the ESA Work Capability Assessment that assesses what work new claimants of ESA can actually do. It found that a man with Parkinson's who couldn't stand for more than ten minutes, slurred his speech and has significant short-term memory loss was deemed able to work.  A man who had incurable stomach and bowel cancer had been found fit to work as he'd mentioned in his medical that he does try to go for a short walk once a day. He successfully appealed the decision, but he should never have had to go through the stress of needing to do so in the first place.

Both these cases deal with 'hidden' disabilities, where the claimant has all their limbs and can move around, albeit with incredible discomfort. I've talked before about the ESA form in a previous blog, but its over-simplistic form and the short WCA medical assessment seem to place too much focus on whether someone's body can mechanically move, not asking questions on the time involved in medical routines (3-4 hours a day for me), extreme fatigue and pace of deterioration that's at the crux of most 'hidden' illnesses.

David Harker, Chief Executive at Citizens Advice said: "The current test to determine eligibility for ESA isn’t working. Seriously ill and disabled people are being severely let down by the crude approach of the Work Capability Assessment. A much more sophisticated approach is needed, that not only looks at a person’s ability to undertake a certain task on the day of the test, but considers supporting medical evidence and other aspects, such as the variability of a person’s condition and the external barriers they face in finding work."

A report by the Depart of Work and Pensions, found that over a two month period, 68 per cent of new claimants for ESA were found fit to work. Such a high percentage makes me fear that ESA is a benefit that the UK government (past and present) is increasingly loath to support.

Talking about the need to reduce Icapacity benefit in the drive to cut the UK's deficit, George Osbourne said: "It's a choice we all face. It is not a choice we can duck". I'd like to add nor should it be a choice between saving money and forcing seriously ill people back to work due to ill-thought through assessments.

Finding hope through painting

In November last year I had a rubbish week. The paper I wrote a weekly column for finally gave up the struggle to survive and closed down. That same week I was admitted to hospital with another lung infection. It was my third admission that year and would mean that in total for 2009 I'd spent a month and a half in hospital.

Following conversation with doctors on what I could do to try and get better, it was agreed I'd give up work, at least for a while, to see if lots of rest and no stress would help where medicine was failing.

By January, I had lost all track of time. I literally had nothing to get up for in the morning and the whole week started to untether itself - each day had no more purpose than the next. Getting used to being out of work, especially as I didn't know if it would be a permanent state of affairs, was incredibly tough. I'd worked in some form or another since I was 16, and a lot of my personality was focused around independence and feeling a sense of achievement through my job.

It took months to adjust my values so I could still feel like a useful member of society.

And one of the things that really helped was enrolling in an art course. It was a ten week 'creative painting for beginners' class held every Wednesday for two hours in London Bridge. Suddenly Wednesday began to exist as a concept in my week again. And I found I really enjoyed it.

This week was the last session of the course. I'm happier, stronger and interestingly enough my lung function has improved for the first time in 18 months. Of course I can't attribute all of this to an art class, but I did notice that 'Arts on prescription' schemes have been runnning in various counties in the UK, such as Devon and Nottingham, since the mid-noughties. Open to those who are living with long-term illness, depression and eating disorders the aim is to increase self-esteem and reduce visits to doctors through involving patients in art.

Its hard for schemes like these to prove their worth through statistics, but from my own anecdotal experience, giving an ill person something to feel positive about, when most of the news from doctors can feel overwhelmingly negative, can truly perform miracles - reaffirming that life can still be good.

And here's a picture of my painting, its not quite finished but I'm looking forward to hanging it on my wall as a reminder that things can get better.

Budget reaction - disabled benefits overhaul must recognise the unpredicability of serious illness

I'm sure we're all paying attention to the budget, listening out for the sections that will directly affect our lives and those of our families. For those ill enough to be in need of benefits, there may well have been a sense of trepidation ahead of what some of the media is calling the 'Bloodbath Budget'.

So I turn my initial reaction to Disability Living Allowance, a benefit for those with significant disabilities to help them with the extra costs of living and care that their health requires. Chancellor George Osbourne has just announced that by 2013 all those in receipt of DLA will need a medical assessment to determine their continued need for such a benefit.

This sounds positive in some regards. Osbourne claims that the introduction of a medical assessment will make the process of claiming simpler - the current forms to claim disabled benefits are hard to understand and do not show an understanding of how long-term illnesses can affect someone's life. For example the new Employers Support Allowance, replacing Incapacity Benefit, has many tick boxes about whether you can stand up, raise your arm and walk. It fails to ask a single question about the time it takes every day to do medicine, how much extra rest an ill person needs, and the fact that someone's health can dramatically vary from day to day, meaning fixed working hours might be untenable. It is such a complicated form it puts the more vulnerable members of society at risk: those who struggle to read; who don't know how to access the support of charities to help understand the form; who aren't used to writing lengthy arguments at the end of the form to support their claim.

But a word of warning to a Government that wants to introduce medical assessments to long-term illnesses - living with uncertainty is something disabled people learn to do from a young age, and my guess is that MP's will soon learn that an illness is very hard to comprehend in a half hour assessment by a doctor that doesn't know the patient.

For those with degenerative illnesses like CF, diabetes, MS and Parkinson's there is no clear timeline of how long your health can continue to hold out, and your health varies massively from day to day, let alone month to month. For someone with CF, an over-simple doctor's assessment in winter rather than summer could result in a different decision to award DLA. Plus continuing to work might literally put some sufferers in an early grave, when being allowed to 'retire' could dramatically improve a disabled person's quality, and could extend it by years.

So MPs, in advance of 2013 please talk in depth to the disabled and medical community first to get a true understanding of long-term illnesses and how they affect day-to-day life and life expectancy. Ensure that the medical assessors have a deep knowledge of the condition they are assessing (perhaps ask doctors from one specialised medical centre to assess patients from another) and keep in mind that everyone should have a right to protect their long-term health.

If an overhaul of the disabled benefits system weeds out the minority of claimants who are unfairly claiming DLA then it can only be a good thing - as long as it doesn't jeopardise a single claim from someone who truly needs help.

Local variances in diabetes treatment challenges the use of 'National' in NHS

A recent national diabetes audit examining differences in patient care across the UK has revealed that almost 60 per cent of those with diabetes are NOT receiving effective care - despite the fact that 90 per cent of diabetic patients are now meeting healthcare teams at least once a year. Of nine recommended care processes that each diabetic patient should be offered, routine urine tests to detect early stage kidney failure is still the least used test - over a third of patients were NOT offered one. Statistics might seem dry but the fact that there has been a 20 per cent increase since 2003 of diabetics needing kidney dialysis or transplant demonstrates how serious these patient care 'oversights' can be.

These variances in health care across the UK are simply unacceptable. If there is a routine list of tests that should be done on diabetic patients, then a GP should simply print it off and tick them off as he or shes goes along. It doesn't have to be any more complicated than that.

It's interesting to note that the data was compiled by statistics offered by Patient Care Trusts (PCT). For those of you who don't know, a PCT is a local body operating within or across a few boroughs that decide how its local 'money pot' should be spent. I've had enough dealings with my PCT to think of a more appropriate four letter word to represent the 'C' in the acronym. No doubt I'll mention the PCT again in my blog, but in my opinion they have more power then they should have and make random monetary decisions about treatment which is never based on what is best for a patient. And often their money saving initiatives are short sighted: it's more economical to keep a patients diabetes under control then deal with the costly consequences such as dialysis and complicated operations.

So, if you have diabetes or any long term illness then do your research. Get in touch with the charity that represents your illness, talk to other patients on health forums and go to your GP armed with facts. If it was me I'd print out the nine key tests that I need, ask for them to be done and insist on a referral to a hospital specialist team if my GP wasn't able to do them.

Until changes are made in the NHS to provide truly universal care, then knowledge really is power when it comes to managing your long-term health.

Differing death rates should just remind us we're all human

Throughout Malcolm Gladwell's 2008 book Outliers, he repeatedly mentions the 10,000 hours rule. Namely that if you want to be a success at something you need to practice that discipline for about 10,000 hours before you can call yourself an expert. A rule that makes us realise that today's Guardian story, about how death rates from the same routine operation differ across the UK, should really be common sense.

Taking data from surgeons working in 116 hospital trusts, it has found that the smaller the hospital the higher the mortality rate from planned operations. It focuses its story on planned vascular surgery for abdominal aortic aneurysm, otherwise known as an AAA operation, and found that death rates from this surgery vary from under 2 per cent in some hospitals to over 10 per cent in 10 of the hospitals surveyed.

You can read more about it on the Guardian's site, but one interesting quote from the piece is: "Some leading surgeons believe that for best results, a hospital needs to carry out at least 50 AAA operations a year. Yet very many hospitals across the UK see less than 20 cases a year. Dartford and Gravesham had just five in three years." It’s logical that if a hospital team has had more practice at something than they are likely to better at it. Perhaps the only reason we are shocked is because it shows that our life is literally in the hands of a surgeon - and we hate to think that surgeons, just like all other people working in different, less life-dependent industries, will be good at some things and not so good at others.

My family learnt this lesson well when I was only two years old. I had to have an operation on my leg. The operation date arrived, my parents took me to hospital and listened to the surgeon as he discussed what he was going to do to make my leg work properly again. After listening to him using phrases such as 'We might make it worse', 'Not sure if I can really do much to improve things' my parents decided he wasn't going to 'have a go' at my legs. They packed my stuff and walked out of the hospital with me, just a few hours before my operation was due. Thank God because the great surgeon who did eventually make my legs work again did so in a completely different manner to what the rubbish surgeon had suggested!

So what should be done? Firstly, do have respect for your hospital team, but if you're not convinced by a procedure or a hospital you are allowed to say - it is your body, you have to live with the results.

Secondly, the Guardian article suggested closing down smaller hospitals, but perhaps another route could be ‘shared care’ - something I again have experience of. When I was a teenager growing up with Cystic Fibrosis I regularly attended a clinic at my local Kingston hospital but I went for a biannual consultation at the world-renowned Brompton Hospital in London. I literally got the best of both worlds - a great local team that was conveniently located and knew me really well combined with new ideas and the latest research suggestions from Brompton hospital. In short, each hospital got to do what they were best at. Perhaps a more flexible hospital system of ‘shared care’ might make operations more uniformly safe across the UK while safeguarding local hospitals that we rely so much upon?