ESA cancer concession signals popularity contest for disability benefits

The news that the Government is softening its harsh approach to cancer patients claiming sickness benefits is a welcome relief. Yesterday it announced that the one year time limit for recipients of Employment and Support allowance will only start counting down once the patient has finished all their medical treatments. It has also said that cancer patients can avoid the WCA medical test carried out by Atos as a GP's report will be acceptable proof for the benefits office.

Finally, we think, the Government is being reasonable. It is trusting NHS doctors again to verify the health of their patients and at last recognises that forcing cancer patients to attend DWP job interviews will only slow down their recovery.

Yet perversely this common sense approach to benefits locks the Government into ever more irrational behaviour. As these changes will only apply to cancer patients, other people with just as serious illnesses will still be locked into an unfair system in which they will lose benefit payments after one year even if they are not well enough to return to work - remember the Government's own estimates show that 94% of people who received time limited ESA will not be better after 12 months. The work-focused ESA also forces sick people to seek jobs, attended job centre interviews and even do unlimited work experience while they are still too sick to work.

So yes this change is great news for cancer patients but it stinks to me of a Government running scared that the public is waking up to how punitative and harsh its sickness benefits system is, and is desperate to avoid appalling headlines like this one. Cancer receives widespread media coverage as it can happen to anyone at any time, so come the election such Government negligence could have become a real door-step issue. But ultimately if the Government recognises changes are needed for ESA and the WCA it has a duty to ensure that they are rolled out universally not just for a particular group of people for whom there is greater public sympathy or understanding.

Just as worryingly this shift in policy sets a precedent that those illnesses that have popular support from the public will get a fairer hearing in the huge welfare upheaval than those who suffer from rare or unpopular illnesses (think what a rougher ride those with depression receive from the tabloid press).

Earlier this year Ian Duncan Smith announced that under Personal Independence Payments (the controversial benefit replacing Disability Living Allowance) amputees will be unlikely to receive the top level of mobility support that they currently do under DLA, and warned the public that this would also apply to soldiers.Yet Cameron intervened saying that amputee war veterans will be exempt from the harsh restrictions planned for the mobility component of PIP.

How can Cameron argue that a civilian with a below the knee amputation caused by a road traffic accident is any less disabled than a soldier with the same amputation caused by an IED?

I can see the way the wind is blowing on this issue and I for one don't want a society in which people with illnesses are pitted against each other in some bizarre X-Factor-style media popularity contest as the rest of us judge who is and isn't deserving of fair treatment.

The myth of ‘overcoming’ will damage the legacy of the paralympics

Thanks to the Paralympics disability may suddenly have become mainstream, but while wider society may be openly talking about those who are disabled I still fear it is not listening to what we have to say.

The papers have veered from castigating disabled people as state scroungers to elevating them as a source of inspiration of how to live life properly. It is great that we can use this spotlight on disability to highlight the unfair cuts to benefits that disabled people are currently facing but this focus on welfare shows just how far society has to go until disabled people are seen as part of everyday life. Inevitably the discussion around disability remains centres around issues of economic value because society struggles to understand the value that disabled people contribute elsewhere.

Disabled people, whom these days I count myself amongst after my degenerative illness Cystic Fibrosis has scarred my lungs to such an extent that I now find it very difficult to walk, don’t actually want to be venerated or viewed with suspicion - we just want to be seen as the normal people that we are. Yes we have extra needs that we need help with but we want to contribute to and impact on mainstream culture in the same way that other numerical minorities such as gay people and black people do.

At the opening ceremony, David Cameron said the fact that competing Paralympic athletes “overcome disadvantages” would help “change people’s minds” about disability, but the games alone cannot be expected to widen perceptions, given that they focus on only a tiny niche of those with a disability. Instead I fear it will just impose a different set of able-bodied expectations onto the disabled community.

The discourse around the Paralympics from scrounger to hero unfortunately shifts stereotypes from one of being a drain on taxpayers (always forgetting that many disabled people are also taxpayers) to one in which the disabled must “overcome” their disability to earn respect from society. Yet locked into this very logic of ‘overcoming’ is the assumption that to be able-bodied it better than to be disabled. Edwina Currie’s unfortunate tweet during the opening ceremony that the Italian team were “gorgeous even in wheelchairs” epitomises the concept that disability is something to be looked past, not something that in itself could be attractive.

But ask disabled people if they would prefer to be able-bodied and you won’t get the answer that you expect. Cystic Fibrosis is slowly overwhelming me, yet I can’t say I would rather not have it because everything I have achieved, everyone I love, everything I am, is bound up with my identity as someone who has Cystic Fibrosis. I can find creative ways to accept and navigate my limitations, I can find happiness in doing so, but I can’t ‘overcome’ my illness - it is incurable.

If we want perceptions to change, then society needs to learn from our acceptance of our disabilities: it needs to learn to accept them, too and embrace the added diversity we can bring to communities because of our disabilities not in spite of them.

In a society in which our differences were appreciated and valued, we would be more welcomed by employers, find more thought given to accessible transport, and generate more outrage at benefit cuts that threaten the independence of disabled people. The fantastic Channel 4 Paralympic advert features a lyric by Public Enemy which resonates with me: “Thank you for letting us be ourselves”. The Paralympics may have got the debate started but we have a long way to go until society’s perceptions will truly allow this.

In praise of an accessible paralympics (and amazing volunteers!)

I was lucky enough to go to the London paralympics yesterday (and see the wonderful win by David Weir in the 5000m wheelchair race) and had an amazing time, very much in part because of the thoughtful attitude shown towards those not as able to get around as most.

The paralympics has received criticism from some disabled people due to an inability for some wheelchair users to sit with all their family at events and for the need to use a premium rate phone line to book accessible tickets. These problems aren't minor and should have been considered and overcome in the seven years of preparation for the 2012 paralympics, but on this occasion I wanted to take the time to congratulate the organisers for also making available some excellent facilities for disabled people.

I have Cystic Fibrosis (CF) and my lungs are now rubbish enough that I struggle to walk any distance at all. The olympic park is the size of 350 football pitches and I'd been worrying for weeks in advance as to how I was to negotiate such impossible distances without my car. But the facilities available made what would have been a very stressful, exhausting and likely impossible day, AMAZING!!

Amazing accessibility
The moment we walked off the tube at Stratford there was a sign pointing towards a side exit very close by that had minivans available for those with mobility problems to take them into the park itself. Both my husband and Mum were welcomed to accompany me on board even though they don't have any health problems. The vans also accommodated all types of wheelchairs enabling them to be safely secured and for the chair user to also have a seatbelt.

Once we arrived at the park, there were volunteers with wheelchairs to take people the short walk to the Games mobility centre where you could borrow a wheelchair or mobility scooter free of charge (just bring photo ID). With this scooter I experienced the freedom I haven't had for years in that we could go all the way to the end of the park (at least a 30 minute walk one way) without feeling like I was killing myself with the effort - to be honest without it I know we would have just stayed by the stadium as my breathing was pretty bad yesterday.

There was a parking bay for the scooters near our designated entrance to the stadium and a volunteer available to show us to our seats. It was at this point we discovered our seats were very near the top of the arena and that there were no lifts! I really panicked as to make it up all those stairs would have been unbelievably hard for me, if not impossible, but the volunteer showed us to the ticket resolution desk, explained our problem and had our tickets exchanged for seats on the ground floor. To be honest the view was so much better - the first time I've ever experienced a CF upgrade!

Welcoming and wonderful attitudes
Unlike the current trend in the wider society that demands almost complete helplessness before help is given, the facilities offered showed a nuanced understanding of disability. It recognised that some of us have adapted and curtailed our everyday lives to cope with our disability but need extra help outside of our home or when we can't use a car.

But the best bit of the whole day was everyone's attitude to my health. The 'games makers' volunteers were unbelievably helpful and respectful. Without them I wouldn't have had the day out I had. I have CF so its a hidden illness, I look ok on the outside, I'm slim, I don't need oxygen, I have all my limbs and I don't seem too out of breath if I don't move much. But no one questioned whether I was ill, there was not even an eyebrow raised or a look of distrust in anyone's eyes. They accepted I needed help, didn't ask why, and gave it to me openly and with a smile and desire that my family should have as good a day out as everyone else.

I wish, wish, wish I'd ask the name of the young black girl, with the coolest hair cut, who swapped our tickets so I could say a public thank you. But she was a wonder! Then there was a soldier who was manning the body scanners, similar to those at airports, at the park entrance who assured me I'd get the scooter through as "long as you're a good enough driver", and the couple who asked me to beep my horn on my scooter so they could run behind me to get through the crowd. These light-hearted attitudes were so precious to me, as yesterday was the very first time I've had to use a mobility scooter to help with my walking. It could have been a very sad day for me, a marker of how poor my health is at the moment, but it wasn't. No one stared, judged, questioned. I didn't feel left out, in fact I felt more a part of everything as I could go where everyone else could go. I loved my scooter!

This is how society should be - that disabled people can ask for help when needed and that that help is offered by people who want you to be a part of the celebrations.

So there are good lessons to be learnt from the paralympics as well as bad ones and I just wanted to say thank you, thank you, thank you to everyone who made yesterday a wonderful experience.

Our view of the start of the 200m T44 race - Oscar Pistorius vs Alan Oliveira

To rant or not to rant?

I had a really interesting mini debate today with a fellow on twitter who thought my article for the Guardian today was like a 'sleeping pill' and 'lacked real passion'. I think the only way you improve your work is to seek constructive criticism good or bad so I asked him to expand on his point.

He argued that: "If you were writing about your family would you be passionate? Well, we are all family" To start with what a fantastic sentiment - we should write as if every issue we write about affected a family members and our writing would subsequently have strength, passion and conviction.

Except I choose to rant to my husband about the injustices in the world and rein in that fervour when I write on disability issues as I believe that a moderate, balanced tone, backed up with stats and facts, is more likely to get people to question their own convictions.

It is easy to preach to the converted but if we want the Government to change its attitude to the disabled we need the wider public to get on board with the horrendous cuts and negative rhetoric disabled people are facing these days. I think the best way to do that is to come across as the voice of reason, leaving the Government to embarrass themselves with their discriminatory attitudes.

But what do you all think: is it best to rant or not to rant? I'd love to hear from other people who write on these issues.

p.s. Here is an article I wrote for the Independent which is a bit more rant -like - compared to the Guardian piece does this one hit home harder?

Government disability strategy delayed - reasons unknown?

The Government recently confirmed a delay in publishing its disability strategy. Originally due to be published in the Spring, the Office for Disability Issues has now announced that the strategy will be released 'later this year' - and have refused to give an explanation for the delay. But I could make a good guess.

In its consultation document, asking disabled people to contribute ideas to its final strategy, the Government said it was "committed to enabling disabled people to fulfil their potential and have the opportunity to play a full role in their community." However I've written before that this commitment is completely at odds with the reality of the impact of cuts on the ground. Disabled people have been hit hard by cuts and changes to Employment support allowance, housing benefit, independent living funds, imminent introduction of PIP, care services provided by local authorities and tax credits. No wonder Lady Grey-Thompson, speaking to the Guardian in February, said: “I worry that it is going to become the way it was when I was young where you just didn’t see disabled people on the street because they were locked away.”

In its recent report ‘Destination Unknown’, the charity Scope demands that the Government look at the cumulative effect of cuts to multiple benefits and social care rather than assessing the impact of each cut in isolation. Without doing so Scope believes that “it is becoming increasingly difficult for disabled people to participate in everyday family and civic life”.

So I bet the delay is because the Government has no idea how to reconcile inclusion of disabled people in society with its raft of cuts that is making that goal more and more impossible. So lets see what Autumn brings, my bet will be another announcement that the strategy is delayed once again. The Government may be happy to implement the harshest of cuts on the most vulnerable of society, but this Government is focused on good PR and it doesn't have the guts to openly admit that disabled people are no longer of interest or importance to it.

An open letter to the Telegraph: get your DLA facts straight

Dear Daily Telegraph,

You had the scoop of the decade with MPs expenses. You are clearly a paper that employs excellent journalists with great research skills. It is a shame these skills weren't utilised when you interviewed Ian Duncan Smith yesterday about the changes to DLA.

Here are the basic mistakes in your article;
1. The subheader says IDS is going ahead with changes to DLA to "rid the system of abuse and fraud". The Government's own figures show DLA fraud is 0.5% for 2010/11. To start the article as you did just cements the idea in the mind of the public that all disabled people are scroungers and consequently kindles negative attitudes towards disabled people.

2. IDS says the number of claimants have risen by 30%. This isn't true. According to IDS's own department, the claimant case has risen by 16% amongst working-age claimants, to whom these changes will only apply, once population growth has been taken into account.

3. "The rigorous new process being introduced by Mr Duncan Smith could lead to those without limbs, including former soldiers, having their payments reduced as their everyday mobility is not undermined by their prosthetic limbs". If you read the Government's draft qualifying criteria for Personal Independence Payments (that is replacing DLA) you'd have realised this statement is disingenous. It clearly says that even if your everyday mobility is severely limited through amputation, under the new system you'll receive minimal support to help with this. Case study 7 says "Andy is 50. His left leg was crushed and had to be amputated above the knee and his right leg was also injured.The scar on his left stump has not healed very well so he has difficulties with his prosthesis and his right leg is weak. He finds it very tiring if he walks more than 40-50m so he often uses a wheelchair if he is going outdoors. Mobility activities = 10 (standard rate Mobility component)". This means that the Government recognises that Andy cannot walk more than 50metres, that, to use IDS's terminology, his 'everyday mobility' is undermined but will only award him 10 points. This means he will no longer be able to access the motobility scheme which allows him to rent a car to give him the freedom that his body no longer allows him.

4."In the assessment, lots of people weren’t actually seen. They didn’t get a health check or anything like that". To get DLA you are medically assessed by the doctors and hospital workers that see you regularly. They need to provide supporting evidence to the DWP that your disability or illness is as you have described it. The DWP regularly contacts doctors who have provided supporting evidence for extra information before it makes a decision. This is why it is actually very hard to be awarded DLA and why the fraud rate is so low.

5."Something like 70 per cent had lifetime awards, (which) meant that once they got it you never looked at them again". This 70 per cent figure may be true and it is very high, but to suggest that some people should not receive lifetime awards shouldn't automatically mean that no-one receives lifetime awards. Many claimants have degenerative incurable illnesses such as Parkinson's or, like me, Cystic fibrosis, or are permanently paralysed. We can't get better, so if we are found to need help this year then the same will be true in four years time. It is a waste of taxpayer's money to reassess all claimants every few years.

6. You quote IDS as saying "Tony Blair’s government tried to attack DLA, just to restrict it. We’re not doing that". Actually IDS is. The Government declared in its Budget 2010 policy costings document that it intends to save 20% from its DLA budget by changing the way it is allocated - this is the very definition of restricting DLA.

There are other things I do not agree with with this article, but as they are matters of tone not fact you have a right to editorial control over these issues. I appreciate that the Telegraph is right-leaning and therefore broadly supportive of the current Government, but by swallowing every fact uttered by IDS without question, this piece reads as a poor advertorial for the Government's cuts, and not as a strong, piece of quality journalism.

Yours sincerely,

Sharon

p.s. All links go to DWP or Government documents freely available on the web, so you could have easily found such reputable sources yourself.

NHS could be the real problem for the coalition come election time

After last week’s wake-up call at the local elections, the Coalition is under pressure to re-examine how its policies reflect voters’ expectations. While there is much debate about the merits of Lord reform, gay marriage, austerity targets and growth policies, the two parties would do well to turn their attention to recent passing of the Health and Social Care bill.

Yesterday’s decision by the Government to veto the information commissioner’s legal demand to publish the risk register reminds us all what a controversial bill this truly was. The Government is still not keen to reveal to the public the extremities of the risk assessment, although an early version of the register, leaked in March, suggests that the worst case scenario of these reforms would be that “the Bill proceeds, without assurance that the whole system is affordable." The document continues: "There is a risk that costs of the future system cannot be controlled."

No wonder the bill received such widespread criticism in the run-up to it becoming law.  In February this year, eight significant health organisations fully opposed the bill, two opposed it in its current form and three were neutral. On top of that a YouGov survey showed the 65% of NHS staff wanted the bill withdrawn in its entirety.

I repeat these statistics as it shows the uphill battle the Government has to secure good outcomes from such a fiercely unpopular policy.

Since the bill became law there has been on-the-ground confusion on how best to implement its policy’s, a situation not helped by aggressive private companies there were waiting in the wings ready to take advantage of this initial knowledge vacumn. Virgin now controls 18 NHS contracts across 15 counties, and Labour back-bencher Dr Éoin Clarke estimates that £2 billion worth of NHS contracts have now been given to private companies.

Despite this plethora of contracts there is no evidence that such outsourcing of NHS contracts will deliver better services, increased choice or long-term control of costs. Indeed, the first NHS hospital to be completely privately run, Hinchingbrooke in Cambridgeshire, has recently caused a furore by announcing it intends to make a profit of £60 million in the next decade despite concerns that to do so would mean making 'eyewatering cuts'. On top of this there are ludicrous stories of physiotherapists who aren’t allowed to touch their patients following a new contract agreed by Principia clinical commissioning group (replacing the local Primacy Care Trust) in Rushcliffe, Nottinghamshire.

If a patient is unhappy with the care they are offered they can complain to Healthwatch, but they’d have to wait five months as, despite the fact that the bill is already on the statute books, it doesn’t launch until October this year. Once this organisation does finally get round to opening, it can then pass on complaints to the Care Quality Commission (CQC) which is now responsible for ensuring that private health providers are honouring the quality expected of them. This is the same CQC that has been overseeing private social care providers since 2009 and has twice been humiliated by BBC Panorama revelation's of abuse at care homes that the CQC had already inspected multiple times and declared acceptable. Despite clearly struggling in its current role, the Government expects the CQC to more than double its workload with 30% less staff.  The public may accept private providers profiting from NHS work, but in exchange it will expect the service it receives to be better than what is currently on offer and it is clear that the systems in place to manage this are already found wanting before they get off the starting block.

It isn’t even clear that in the current rush to implement these reforms the basic principles of free market capitalism are honoured, a principle that is the bedrock behind the spending decentralisation of this Tory-led Government. Despite health secretary Lansley’s much vaunted initiative of giving GPs the budget and power to buy services for its patients, it is alleged one local commissioning group in West Sussex weren’t told about a new contract award to Virgin healthcare until after it was signed off.  The commissioning board were therefore not able to consider the merit of the bid in comparison to other interested parties – a clear failure of the health bill’s objective of tendering-out NHS work to help achieve better value for money for the taxpayer.

After such a turbulent month the Government most probably couldn’t bear the horrendous headlines that would result if it revealed what risks it is truly taking with our beloved NHS. But whether made public or not, those risks outlined by the risk register still remain. No doubt the Government is hedging its bets that the new Health Bill would have bedded in by the time an election is called in 2015, and any initial concerns by the public would have been proved false. Three years is also enough time for the NHS as we know it to have unravelled, for charges for non-urgent surgery or treatment to be mooted, for waiting lists to grow, for private companies to make large profits while limiting the contact patients have with doctors. And the first few months of policy implementation don't embue one with confidence that the NHS is in safe hands.

So Cameron and Clegg be warned: the battle to push the health bill through parliament could prove miniscule compared to the battle on voters’ doorsteps in 2015 to convince them that you can be trusted with the NHS.

My predictions for the future disintegration of the NHS

Yesterday the health and social care bill was made law. So what are my predictions for the future of our beloved NHS? 

• In the short-term there will be a vacumn of authority as the old system devolves power to GPs who are learning on the job. I predict there will be a flurry of contracts awarded to private companies to take control of local commissioning and health services as GPs struggle with the enormity of the challenge imposed upon them

• In the medium-term integration between departments and hospitals will begin to splinter as hospitals concentrate on pulling punters into their doors in order to 'win' funding from GPs. (For example from my own experience Chelsea & Westminster hospital send their doctors to Brompton hospital to enable joint consultation for CF patients who also have liver disease. I can imagine such arrangements ending due to funding complications.)  

Waiting lists will rise as services try to stick to budgets by rationing care and maximising the number of private patients they treat. The bill allows up to 49% of work at NHS hospitals to be given over to private patients.

More and more obese people and smokers will find themselves denied services as GPs find any excuse to limit care in order to meet spiralling costs. 

National scandals will arise in which private health companies are accussed of patient neglect and care as they cut services in order to make a profit. This has already happened under Bupa.  

• In the longer-term, we'll all get used to paying for some NHS services. I can easily imagine paying for evening and weekend doctors appointments as it'll be billed that you are buying the convenience of the time, not the service. 

It'll become routine to take private healthcare if you can afford it.

• In the very long-term the NHS will become a safety net only for those who have no private healthcare, and people will expect only the most basic care for it. 

As such the life expectancy gap between the rich and poor will continue to widen.

The health and social care bill is the worst thing this Government has done while in power, and Cameron and Clegg will be hated for it by future generations far more than Thatcher ever was for her deindustrialisation drive and war on the miners.

Today the NHS is dying. Cameron & Clegg will never be forgiven.

So let's mark this date in our calendars and tell our grandchildren. The NHS - that wonderful institution created after a war in which every family came to experience first-hand what it was to suffer and to lose loved ones -  is officially dying. Today, the Health and Social care bill became law.

• It allows private providers to cherry pick what services it provides leaving NHS to pick up the problem patients which don't present an easy profit (the Lib Dems have claimed they have amended the bill to prevent this happening but their amendment only demands that providers are transparent when they do cherry pick).
• It forces hospitals to compete against each other for funding meaning that they are at threat of unplanned closure if they don't get enough patients. It also promotes competition rather than integration of care which is what is needed to help better manage the prevention of long-term conditions such as diabetes and liver disease, two illnesses that are rising exponentially and are a massive drain on NHS resources.
• It allows up to 49% of work at NHS hospitals to be given over to private patients effectively doubling the waiting list for those people who can't afford private health insurance.
• The risk register, that the Government refused to release despite repeated demands to do so from the Information Commission, was leaked yesterday. It is thought to be an early draft but it clearly warns that the Bill could make the NHS unaffordable: "[A risk that ] design work proceeds without the confirmation of cost envelopes for each organisation which means that the future system design is signed off, and the Bill proceeds, without assurance that the whole system is affordable. One example of area where system could be more costly is if GP Consortia makes use of private sector organisations/staff which adds costs to the overall system". The document continues:: "[A risk that] Future efficiencies cannot be managed and driven through the system effectively, because there is no organisation to plan and manage holistic efficiency programmes. So there is a risk that costs of the future system cannot be controlled."

So what are my predictions?  

• In the short-term there will be a vacumn of authority as the old system devolves power to GPs who are learning on the job. I predict there will be a flurry of contracts awarded to private companies to take control of local commissioning and health services as GPs struggle with the enormity of the challenge imposed upon them

• In the medium-term integration between departments and hospitals will begin to splinter as hospitals concentrate on pulling punters into their doors in order to 'win' funding from GPs. (For example from my own experience Chelsea & Westminster hospital send their doctors to Brompton hospital to enable joint consultation for CF patients who also have liver disease. I can imagine such arrangements ending due to funding complications.)  

Waiting lists will rise as services try to stick to budgets by rationing care

More and more obese people and smokers will find themselves denied services as GPs find any excuse to limit care in order to meet spiralling costs. 

National scandals will arise in which private health companies are accussed of patient neglect and care as they cut services in order to make a profit. This has already happened under Bupa.  

• In the longer-term, we'll all get used to paying for some NHS services. I can easily imagine paying for evening and weekend doctors appointments as it'll be billed that you are buying the convenience of the time, not the service. 

It'll become routine to take private healthcare if you can afford it.

• In the very long-term the NHS will become a safety net only for those who have no private healthcare, and people will expect only the most basic care for it. 

As such the life expectancy gap between the rich and poor will continue to widen.

So as I say, mark this date in your diary. The health and social care bill is the worst thing this Government has done while in power, and Cameron and Clegg will be hated for it by future generations far more than Thatcher ever was for her deindustrialisation drive and war on the miners.

Budget 2012: the disabled marginalised yet again

Yesterday's budget contained a kick in the teeth for disabled people, quickly followed by a punch in the face.

The Chancellor's retreat on child benefit, moving the threshold for ineligibility from those earning over £43,000 to those earning over £60,000, was a bare-faced example of the Government looking after its own voters. When the planned benefit cut was announced last year there were howls of outrage amongst higher rate earners, and the Tories, mindful an election has to be fought in perhaps two years time, decided to try and save their own skins.

How is this relevant to disabled people?

When the recent Welfare reform Bill passed through the House of Lords, three defeats were enacted on the Government as the Lords chose to make changes that they believed would safe-guard some of the most sick and disabled in the country. One of those changes was to extend the length of time that people on contributory-based Employment Support Allowance could claim the benefit. The Government proposed that those people place in the Working Capability Group of ESA (so claimants who are too ill to work but should be able to in the future) could only claim the benefit for a year. The Lords voted to extend this to two years to ensure that people had enough time to get better before being forced into work. Macmillan cancer support for example argued that annually 7.000 cancer patients, routinely placed in the Working group of ESA, take longer than 12 months to recover.

Although the Lords followed due democratic process to enact these changes, they have not come into force. The Government used 'financial privilege' to block these amendments. In short, MPs cried "Sorry, no money!" and did so in a way that has seen no precedent.

But suddenly come budget day, the Government discovered a stash of cash to save the child benefit of higher rate tax-payers, those who are doing ok in life, and yet still no money to extend ESA for those who are too sick to work through no fault of their own. More worryingly for democracy, the Government places greater value on the opinion of its voters then on the democratic process of a Bill being passed into law.

The second fear hidden in the budget was Osborne's casual mention that Ian Duncan Smith would have to find a further £10 billion of welfare cuts on top of the £18 billion already slashed from these bills. The biggest slice of welfare is spent on old age - with today's vicious headlines about a granny tax I can't see the Government making any further cuts to pensioners. Child benefit cuts now seem completely off the table, a decision that Ian Duncan Smith may come to resent Osborne for as he frantically tries to cut £10 billion.

So where can more cuts be found? Housing benefit perhaps, childcare credits even, but a clear forerunner would be disability benefits. Disability Living Allowance is already scheduled to be scrapped next year, and replaced by Personal Independence Payments (PIP). In the Government's last spending review it arbitrarily decided to cut recipients of PIP by 20%, before it had even decided the criteria for eligibility or assessed the needs of a single disabled person.

What's the betting that in the next spending review the Government decides to save 25% or even 30% from the PIP bill? I for one am very worried.

What practical changes to Atos's WCA would you recommend to the Government?

The 'Responsible Reform' Spartacus report revealed the power of social media in helping to raise awareness to the cuts faced by disabled people in the UK. It got the House of Lords to listen to disabled people. If it wasn't for a the Government utilising the Commons 'financial privilege' in a way that has seen no precedent, significant changes would have been made to the Welfare Bill that would have protected disabled people from some of its worst 'reforms'.

So thinking about this success, and following on from the brilliant article written by Amelia Gentleman in the Guardian earlier this week, I thought it would be great to capture people's experiences of Atos's Working Capability Assessment (WCA) to pull together recommendations for the Government to help make the process fairer.

As much as many people reading this will say the WCA shouldn't exist, my main focus is to work within the system that has been imposed on us (and which no political party has recommended repealing) to think of practical changes that the Government could implement immediately and at no cost. Listed below are my initial thoughts. Please do comment and add your thoughts too.

1. DWP should give doctors' reports equal weight as Atos's WCA medical test
Although Atos conduct the 'independent' medical test it is the DWP who have the final decision about who does and doesn't receive ESA. It is widely felt amongst the disabled community that in reality the DWP are just rubber stamping the decision made by Atos's medical test, at it is the company's system of awarding points to a claimant's illness that decides if someone reaches the threshold of eligibility. A simple change would be to give equal weight to the reports given to the DWP by the claimant's own doctors and to the report provided by Atos. Where there is a clear discrepancy in the perceived ability of a claimant the DWP could step in early to demand more informationn from both parties, hopefully reducing the number of mistakes made and the huge cost to the Government of managing appeals against DWP's ESA decisions.

2. Stop the continual cycle of re-testing
One of the shocking problems within the ESA system, is that once a claimant has waited up to nine months to have his or her case heard at the court of appeal and finally been awarded ESA, they can be recalled for another medical within months of the appeal being heard. This second medical then strips the claimant of ESA forcing them back into the stressful and lengthy appeal process. This makes no sense to either the claimant who is struggling to regain their health or to the tax payer which is paying £50 million a year for this appeals merry-go-round. At each appeal hearing, each claimant should be given a date before which they cannot be called back for another medical and the DWP must be made to honour this date. I suggest a year before retests but opinions are welcome on this.

3. Impose financial penalties on Atos for incorrect decisions
A Commons select committee report last year highlighted that Atos may be driven by a profit motive to, in their words, "get the assessments done, but not necessarily to get the assessments right". The Government should treat Atos like any other private contractor and impose financial penalties for incorrect decisions. Clearly a margin of error may be acceptable but decisions in which a claimant has been awarded 0 points by Atos to then be awarded 15 points on appeal cannot be justified. It isn't in the taxpayers interest to fund an appeal process worth £50 million a year while letting Atos retain all of its £100 million annual fee.


Please do let me know what you think - it would be great to work together as a social media community to create key recommendations from those who have been through the WCA process to try and make a difference to those who have to endure it in the future.

C4 programme 'The Undateables' - Good or bad idea?

I saw today that Channel 4 are launching a new programme called 'The Undateables'. It basically sends people with a disability or impairment to a dating agency and tries to help them find love. Is this a good idea?

The blurb is already pretty unfortunate.

It says that the programme will follow "a range of people whose ability to form relationships is affected by an impairment or challenging condition - such as being deaf, or having Tourette's". I'm not deaf nor do I have tourettes but I wouldn't have thought either of those conditions has an impact on a person's 'ability to form a relationship' as that complicated emotional stuff about commitment and falling in love doesn't have much to do with whether you can hear clearly or not. 

I do have Cystic Fibrosis. I know that lots of CF people do worry about whether or not they will find someone to settle down with as it does take a very special person to say 'yes please' to all the crap that CF entails (including not reaching pensioner age or, for me, having kids (although some CF people do have children). But I'd just like to add the other side of the coin: that having a serious illness makes you genuinely understand the brevity of our life on earth and that means that some of us don't want to put up with shit relationships just so we can say we are attached. I'm pretty sure I once dated someone who was attracted to 'ill' people as it made him feel more like a man. I've also dated people who have emotional problems of their own that my crap lungs seemed like a small 'problem' in comparison. I didn't want to stay with either of them just because they were 'willing' to date me.

Anyhow, I think for teenagers growing up with an illness dating is a bad enough worry without walking round town and coming across posters hailing you and 'your sort' the new undateables.

What does everyone else think? Is this programme a good idea or an absolutely crap one?

p.s. I'd just like to add I'm married to the most amazing man in the whole world so for anyone reading this and thinking their health might prevent them meeting their love, then believe me IT DOESN'T!

The Government’s disability strategy out of touch with the reality of cuts

The Government is in the final week of its consultation asking disabled people to help develop its disability strategy. Maria Miller, minister for disabled people, has said that: “The Government is committed to enabling disabled people to fulfil their potential and have the opportunity to play a full role in their community”. But in reality it is clear that the Government lacks any cohesive policy that will enable this to happen.

In the last three years 31 people have died while awaiting appeals against Employment and Support Allowance (ESA) medicals that had found them fit to work. At their most vulnerable, the sick and disabled were left worrying to the day they died about how they and their family would cope financially while their illness was slowly killing them. Society should be in uproar that people in dire need turned to the state for help and were failed by it, but instead media and Government debate focuses on disabled ‘scroungers’, further isolating the disabled from their communities.

Yet while it could be argued in the case of ESA that Government incompetence is forcing disabled people into hardship, the same cannot be said for Personal Independence Payments (PIP), the new benefit that is replacing Disability Living Allowance (DLA). Under PIP eligibility rules, even if you cannot walk more than 50 metres and need a wheelchair to get about for any longer distances, a disabled person still won’t be eligible for higher rate mobility – which in short means they will most likely lose access to a car through the motability scheme and the freedom such a vehicle gives them that their body cannot.

By cold-hearted design, these ‘independence payments’ will in fact take independence away from severely disabled people and force them to remain in their homes. No wonder Lady Grey-Thompson, speaking to the Guardian last month, said: “I worry that it is going to become the way it was when I was young where you just didn’t see disabled people on the street because they were locked away.”

These aren’t the only cuts aimed at disabled people. The Department of Work and Pensions’ own analysis into the housing benefit reforms states that 450,000 disabled people will face cuts to their allowance under new rules. 78,000 disabled people who use legal aid to appeal against decisions to deny them benefit will lose this support under Ken Clarke’s reforms. The Independent Living Fund (ILF) has been entirely closed to new claimants and by 2015 payments to the 21,000 severely disabled people it helps will cease. Tax credits to help with the extra costs of raising a disabled child will be cut from a maximum of £54 a week to £27 a week under Ian Duncan Smith’s Universal Credit changes – cuts that the Children’s Society says will see some families with disabled offspring £1,400 worse off a year. According to a Government Select Committee on Health, nearly two thirds of local authorities in England have reduced their disabled and adult social care budgets. As such councils have drastically altered their criteria for providing care to disabled adults, leaving many people unable to wash and dress themselves properly isolated in their own filth as they are not disabled enough to qualify for care.

These cuts will severely curtail disabled people’s ability to “fulfil their potential”. PIP will actually remove independence from disabled people, the scrapping of ILF will see disabled people condemned to care homes, decisions to limit ESA to one year, leaving 7000 cancer patients without any financial support while they are still too unwell to work, will only help in moving disabled people into poverty, not into the workplace. Cuts to legal aid will take away their voice, housing benefit remove them from often supportive communities and homes that are specially adapted for their needs. Harsh reductions in social care budgets will see people stuck in hospital for longer periods of time as they cannot be discharged into communities because they lack provision for their basic care. Disabled people were already twice as likely to be living in poverty than others before these cuts were imposed: no wonder disabled people up and down the country are scared stiff of these ‘reforms’.

The Government’s consultation document, entitled ‘Fulfilling potential’, makes specific mention of “tackling discrimination” towards disabled people and “promoting positive attitudes”. Yet charities have directly linked a rise in disabled abuse with the increasing rhetoric from Government ministers that disabled people are scrounging off society. 

So bad has the Government’s attitude become that disability groups are now questioning whether they can continue to work with it on shaping further welfare reforms.

By the end of this parliament, if all these cuts are implemented, far from disabled people fulfilling their potential, the Coalition would instead have successfully reversed twenty years of advances made in helping the disabled play a valued and active part in society. Shame on all MPs if that is their intention. And if it isn’t, then the Government must wake up to the impact of these cuts, ban negative ministerial rhetoric linking the disabled with ‘scroungers’ and honour its supposed desire to develop policies that give back respect and support to some of the most vulnerable people in society.

Reason #3 why the NHS bill should be dropped

We live in a democracy and the way this Bill has been handled is thoroughly undemocratic.

The Government is sitting on a risk register of its NHS reforms and refuses to publish it until after the Lords have debated the bill. The Government has logged an appeal against a decision by the Information Commissioner that this document must be in the public domain. The lengthy appeal process means the information will only be released after the Bill becomes law. How can anyone debate the merits of a huge change in the NHS without all the information to hand? Unsurprisingly there is an early day motion signed by 75 MPs and counting demanding that this information be released. According to a Labour Party member, the risk analysis warns that the reformed NHS will become unaffordable due to a huge 'surge' in costs. No wonder Lansley is adament no one should read it.



Just as concerning, the reforms are already being enacted across the country before the Bill has even passed. I've posted on this before, but in short the Bill looks to give GP commissioning powers and open up the NHS to'any willing provider' (although this has recently been amended to 'any qualified provider'). Health Secretary Lansley believes that 97% of the country is now already covered by GP commissioning and current Primary Care Trusts are tendering out health contracts to 'alternative providers' (i.e. private companies). This has all happened while the Bill was officially 'paused' by David Cameron. It is unacceptable that any elected Government enacts controversial reforms without the approval of an elected parliament. There is also the glaring fact that these reforms do not have an electoral mandate as they did not figure in either Liberal Democrats or Tory party election manifestos.

The Coalition is twisting the processes of democracy to suit its own ends - I would hate the Health Bill to set a dangerous precedent.

Reason #2 why the NHS bill should be dropped: Winterbourne scandal

Today three staff from Winterbourne care home appeared in court to admit abuse of their patients. The case came to light after a shocking Panorama documentary expose of appalling abuse at the care home.

The care home had previously been inspected three times by the Care Quality Commission and deemed to provide acceptable care - even more shockingly it failed to act on three emails it received from a highly qualified nurse who used to work at the home warning of the abuse at the unit. The CQC clearly failed in this instance and allowed Winterbourne's vulnerable patients suffering to continue.

Why is this relevant to the NHS?

The CQC will have its powers widened under the NHS bill, giving it "sole responsibility for registration against essential standards of quality and safety" of private providers looking to deliver NHS care. In short this means the CQC will check whether private companies provide decent and safe care and treatment. Last year the CQC cut its inspections by 70%. It has just 900 inspectors to cover 18,000 care homes, 8,000 GP practices, 400 NHS hospital trusts, 9,000 dental practices and, in addition, every future new NHS provider.

Given what happened at Winterbourne, it is clear that the CQC is already struggling to cope in its role, do you trust them to ensure that private providers are really up to scratch?

Reason #1 why the NHS bill should be dropped

Under the NHS bill currently being debated in the House of Lords, provisions have been made that allow all NHS hospitals to allocate 49% of their beds to private patients. Which means waiting lists will automatically double in length and us lot who are already over-stretched paying bills and can't afford private healthcare, will be at the back of the queue.

Makes a mockery of Lansley's recent demands that hospitals get their waiting lists under control!

I'll post reason a day that the NHS bill is a disaster while it is being debated in the House of Lords.

DLA reform should be PAUSED until TWO key issues resolved

Following on from last week's dramatic defeat in the House of Lords of three proposed welfare reform changes, the debate has now moved on to the reform of DLA. The Lords will be voting tonight on the plans, including an amendment by Baroness Grey-Thompson, of paralympic fame, that there would have to be a pilot before a new medical assessment of DLA is brought in. You can also read more about this at Sue Marsh's great blog. However, for the sake of the taxpayer and disabled people across the nation, DLA reform should be paused until two key issues are resolved.
 1. Do not scrap DLA until the Government can clearly demonstrate that its desire to cut 20% from the budget will not leave genuinely sick people in need
Government statistics show the fraud of DLA is 0.5%, yet in its 'Budget 2010 policy costings document" the Government unveiled its intention to cut the number of those in receipt of DLA by 20% despite the fact it is yet to outline any eligibility criteria for PIP. This obviously raises serious concerns that genuinely ill people will be denied benefit solely to meet a pre-decided budget and that 'eligibility' for PIP will be driven by costs not by need. As Sue Marsh highlights in her blog, the current tabled legislation has so few details in it, which are meant to be decided by MPs under secondary legislation at a later date, that we do not know how these reforms will affect our lives, despite the fact it is being introduced NEXT YEAR.

2. Halt any introduction of PIP medical assessments until the financial and emotional catastrophe surrounding the similar medical for ESA is sorted out
The Government wishes to introduce a medical assessment for all recepients of PIP, despite the fact that a similar assessment process for Employment Support Allowance is currently in a huge mess. Society should be in uproar that 31 people have DIED while awaiting appeals against ESA medicals that found them fit to work.
40% of decisions to deny ESA are overturned at the appeal stage. Appeals have so far cost the taxpayer £80 million and the contract with private company Atos to manage these medicals is worth £801 million over ten years. Atos is yet to have any financial penalities imposed upon it for inaccurate reports resulting from the medicals it has conducted.

That's me done, hospital appointment later and typically the day I need to leave the house my lungs are behaving terribly. Fingers' crossed the vote in the House of Lords helps bring back common sense and support & respect for disabled people across the country.

For the taxpayer’s sake, halt the introduction of disability benefit PIP

In response to every criticism of the Government’s austerity drive, the Coalition insists there is no alternative to the cuts and yesterday morning was no different. Speaking on the Today programme, Work and pensions minister Chris Grayling again argued that it was in the taxpayer’s interest for the Government to press ahead with disability welfare cuts despite last night’s dramatic defeat in the House of Lords of three proposed welfare reform changes. Yet as the debate shifts to other aspects of the welfare bill, it can be argued that key elements of the proposed reforms in fact short change the taxpayer.

The Government is intent on scrapping DLA and replacing it with Personal Independence Payments (PIP), despite the fact that only 7% of organisations that took part in a recent DLA consultation were fully in support of this change. The reasons given by the Government for abandoning DLA struggle to stand up under scrutiny, as this week’s excellent Responsible Reforms report by disabled campaigners highlight, but what is clear is that the Government has estimated it will cost £675 million to scrap DLA and introduce PIP.

In addition, despite fierce opposition from disabled people and, at 0.5%, DLA having the lowest fraud rate of all Government benefits, the Government is still intent on introducing a medical test for all potential recipients of PIP. It is suggested it would operate along the lines of the Working Capability Assessment (WCA) administered by private company Atos healthcare for those currently applying for Employment Support Allowance. Frankly, this assessment isn’t currently fit for purpose. 40% of decisions that people are ‘fit to work’ are overturned at the appeal stage, and these original decisions are very heavily based on the findings of the WCA. Atos has not yet been given any financial penalty for any inaccurate report it has produced despite the fact that the hefty appeals process for ESA has cost the taxpayer a staggering £80 million to date. On top of this, the Government is already paying Atos £801 million over a ten year period and one can only presume the contract will increase in size were Atos to be asked to also undertake the medical assessments for PIP eligibility.

In its ‘Budget 2010 policy costings’ document, the Government highlighted a desire to cut DLA payments by 20%. Currently annual DLA payments amount to £12.6 billion, so a 20 per cent saving on this figure would come in at £2.52 billion annually. The up-front PIP implementation costs plus a medical assessment contract similar in size to Atos and any subsequent appeals expenses would eat up half of these savings.

In an age where we are continually told that every penny counts, the Government must justify these costs, including whether it is in the taxpayers interest that 100% of DLA recipients will be forced to attend a medical, even those that have an incurable, end-stage illness. Wednesday's successful House of Lord’s amendment to the welfare bill to exclude cancer patients from being subject to the one year ESA time limit, and therefore implying a medical test for such patients would be redundant, suggest there isn’t the public appetite to impose stressful health tests on the seriously ill who are trying to claim benefits in their hour of need.

The Government also has an obligation to the taxpayer to ensure its money is sensibly spent. The medical tests for PIP eligibility are set to begin in 2013, despite the fact that the latest Harrington report, which examined the practical implementation of the WCA medical test, states it will take at least three years to see if its recommendations have improved the accuracy of the medical test in identifying real need.  Until the Government manages to get WCA appeal rates under control, there is little point adding another hefty bill to the taxpayer’s purse to extend the number of ill people required to undergo similar assessments. Indeed the Government should be obliged to go further and ensure the taxpayer is getting value for money from existing medical assessment contracts by forcing financial penalties on those companies making repeated mistakes for which the taxpayer is currently picking up the bill to rectify.

Don’t get me wrong, I’m not in favour of an arbitrary 20% cut in DLA and I’ve written before voicing my concerns that people who need genuine Government help will be deemed ineligible in order to meet a pre-decided budget cut. But it seems to me that the Government is simply scrapping DLA only to replace it with a similar benefit at great cost to the taxpayer to avoid the PR fall out of being seen to take money away from the long-term sick. In an age of austerity there cannot surely be any spare cash to help the Government save face.

If the Coalition wishes to reform or cut DLA then it should have the courage to makes its case in a fair and democratic manner and make changes within the current benefit. It should not hide its agenda behind a name change or ‘independent’ medical assessments. The introduction of PIP should be recognised as a waste of money which cannot demonstrate any clear benefit to the taxpayer. It should be halted now, before it too becomes a disastrous, administrative nightmare like ESA is now proving to be.