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.