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?