NHS reform - there is another way

Slowly the public is beginning to understand the massive implications of the NHS white paper the Government released in July last year. With the Health and Social bill published today even the right-wing press, more in tune with the Government's thinking, are nervous about endorsing the plans whole-heartedly. This is a clear indication of how risky the plans are - no one is quite sure the outcome of this massive shake-up, although everyone is agreed that it will be the biggest change faced by the NHS since its creation in 1948.

During their election campaign the Tories promised no more top-down NHS reorganising, and in a bid to justify this policy u-turn David Cameron claimed this week that "we can't afford not to modernise". However, I believe that considerable reforms can still be made without jeopardising the entire structure of the NHS, especially when it is undergoing a period of austerity on a previously unheard scale.

Last year I spoke to Cumbrian GPs for a piece for the Guardian. Cumbria has been slowly devolving commissioning power from Primary Care Trusts to GPs, with GPs responsible for the vast majority of the money since April 2010. And I found that in Cumbria it is working well. GPs have focused on providing local care for their patients. They now treat more patients in their home by developing a network of mobile nurses; they have allowed routine blood tests and minor operations to be done in GP surgeries; they have worked on improving how patients manage long-term illnesses to help cut hospital emergency admissions.

I didn't expect to be so impressed by 'clinician-led' commissioning but I was. It improved patient treatment and it made best use of the budget that was available. The Cumbrian GPs were strong advocates for their patients and when this fervour was combined with budget management it naturally resulted in GPs thinking more wisely about how best to spend their money.

But Cumbria's experience has not yet involved private companies. They are effectively running their businesses as not-for-profit community interest companies. As such the spending decisions were genuinely managed by GPs and not enforced upon them by private companies such as United Health, which a Houslow GP consortium has brought in to manage its patient referrals. In response to concerns raised during the NHS white paper consultation phase, it is very telling that health secretary Andrew Lansley amended his proposals so that the person with overall responsibility for a GP consortium's budget need not be a GP. In fact, a cynic might say that the reason GPs are being forced to take on commissioning so quickly, (in less than half the time Cumbria has spent introducing the change) is so that they will be forced to turn to private companies for help, allowing the Government to make such companies the 'enemy' if its proposals don't work out so well.

Perhaps most crucially Cumbria has not begun to tackle the issue of competition that the Government is so keen to impose on the NHS - it wishes to open up patient care to 'any willing provider'. In fact, from what I saw, there was even less competition in Cumbria because it placed a large focus on improving the care pathways between primary care (GPs) and secondary care (hospitals). For example, GPs are helping to man A&E wards and they are using new computer software to gain an overall view of patient care. This helps them ensure hospital patients are admitted for as long as they need before having their care transferred to their home in the local community. As such, GPs are forging closer relationships with local hospitals, which in my mind precludes competition from private providers. It is working for patients (I spoke to one man who avoided a three month hospital stay by receiving daily intravenous antibiotics in his home from visiting nurses) and it is saving money - the budget for hospital emergency admissions has been cut by 6% in 2009 to reflect its 6% fall in caseloads.

But when I specifically asked one doctor about introducing competition, a doctor who describes himself as "evangelical" about clinician-led commissioning, he agreed it was the aspect of the proposed reforms that he'd be most likely to challenge the Government on. He also commented that now waiting lists have been brought down to 18 weeks or less there is not such need for competition. It is interesting, then, that the Government started talking about introducing competition into the NHS around the same time that it scrapped waiting list targets for hospitals.

Perhaps media confusion surrounds the Coalition's proposals because one half of the reforms that focuses on GP commissioning and seems innovative, and if allowed to evolve over a longer period of time than currently demanded by Lansley (which will allow GPs the time and space to consider options other than enlisting private management companies), may well provide the best bang for the buck in the NHS. But the other half of reforms that focuses on competition is incredibly worrying. The Mirror today highlighted how many Tory donors have direct links with the private healthcare market. The Guardian yesterday spoke about the key clause in the reforms that allows private healthcare companies to undercut market-rate tariffs. This is sheer folly. A giant healthcare company can afford to write off huge losses while waiting for NHS hospitals to go under through lack of funding, before raising its prices once it has won itself a dominant position in the market.

The Health and Social care Bill is released today. Spend some time reading newspaper reports about its content and ask yourself if this is what you want for your NHS. In my opinion, the best way forward is to follow Cumbria's lead. Involve GPs in commissioning, but at a pace that works for them; improve care pathways between primary and secondary care, devolving more treatment to local areas if possible; phase out PCTs, replacing them with GP consortia that have a better understanding of patients and treatment options; maintain Strategic Health Authorities so that GPs are still guided by the state and not private companies who have their shareholders interest at heart.

The NHS white paper released last year was called 'Liberating the NHS' - I can't help but think that what this really means is that the proposals liberate the Government from having to manage the NHS at all.

Innovative community care can be marvellous - but instead we're going backwards

I'm rather appalled that it's been a month since I last posted. I guess having Cystic Fibrosis, planning for Christmas, New Year, my Mum's birthday and my 30th birthday have all taken their toll. Truth be told I'm shattered and writing this while wrapped in a duvet eating the remains of a Christmas cake.

As interesting as my tiredness is, it does have a point to this blog. I have a small device under my skin through which I can administer intravenous antibiotics when I need them. The device needs flushing every six weeks and I've just got off the phone from the outreach team at Brompton hospital to book in a nurse to come to my home next week to flush it. This means I don't have to trek to hospital and expose myself to bugs on the ward. Instead I can rest, stay in the warmth and try to get myself stronger while still getting the treatment I need.

Outreach nurses are fantastically important to the way ill and disabled people can maintain their independence and cope with their illness without filling up hospital beds unnecessarily.

During research for a Guardian article, I recently spoke to a patient in Cumbria who was over the moon about the treatment he'd received from a team of outreach nurses. 78-year-old Mr Clancy needed a lengthy treatment of intravenous antibiotics that he could not administer himself, to cure a severe, but one-off, infection. The infection was so advanced that he was very weak and felt unable to commute to hospital every day. His local GP arranged for him to have a nurse visit him every morning in his own home for three months. He firmly believes that if it wasn't for this service he would have spent 90 days in hospital. In 2002, the cost of a hospital bed was estimated to be €228 per day. Clearly this figure is out of date and would no doubt be higher almost a decade on, but even using this figure Mr Clancy's three month stay would have cost €20,520, or £17,444. And that figure excludes his actual treatment.

It makes economic sense to improve care in the community as hospital admission is one of the most expensive aspects of the NHS. Local care reduces the risk to patients from costly hospital-based infections, it improves their spirits by ensuring they can get better in their environment surrounded by loved ones and it means that hospitals can focus on treating acutely ill patients.

It is therefore really disappointing to me, as someone who has really benefited from community nurse care, that community care, far from being used to help innovate and improve services, appears to be going backward.

Yesterday's Guardian headline story revealed that, in a survey of over 500 doctors, 50% now feel 'bed-blocking' is worse than this time last year, while 40% feel it hasn't improved. Bed-blocking is a term used for patients who are well enough to leave hospital but can't be discharged as there is not sufficient community support to continue their care at home. Often this isn't even innovative support, such as having traditionally hospital-based treatment administered at home, but is basic adult social services support, such as help with personal hygiene and cooking. Just two stories around this week show that Hull council is looking to scrap its adult residential care entirely and Kingston in Surrey is planning to put up the cost to recipients of its adult social care.

The Government has given the NHS a budget rise of 0.1% a year in order to honour its commitment to the electorate of protecting the NHS budget. But simultaneously local councils are facing cuts of up to 8.9% to their budgets. Consequently many, as the examples above show, are looking to their care bill to see where savings can be made. Cutting local social care will directly impact how much the NHS has to spend on each hospital patient. On top of this the NHS is being forced to find £20 billion of efficiency savings by 2014. I can't see how it can even begin to achieve this if hospitals find it increasingly difficult to discharge patients into local care because of cuts to council budgets.

I've first hand experience of the great things that can be achieved if there is greater care in the community, so it's such a disappointment to see that even the basics of community care are now under threat. The Government will not make any NHS efficiency savings whatsoever if it doesn't start to hear the alarm bells ringing up and down the country around the issue of local social services.

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

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

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

The Government is implicated in creating negative attitudes to disabled

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

NICE loses power to save Government from hostile headlines?

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

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

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

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

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

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

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

The proposed changes to ESA will fail those with incurable illnesses

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

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

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

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

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

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

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

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

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

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

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

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

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