Waiting-list Watch - part 1

In June 2010 health secretary Andrew Lansley scrapped NHS waiting list targets. He argued they created too much paper work and he wanted the NHS measured on "patient outcomes' instead of arbitrary targets. Unsurprisingly with the targets gone, waiting lists are now creeping up. Lansley is wrong to think patients will only judge the NHS on outcomes, they will judge it on the whole process from start to finish. How long you wait to see a doctor, receive a diagnosis and start treatment are intrinsic to what patients think about the NHS.

Trade magazine, Pulse, announced today that waiting lists have increased, on average, by a quarter already. 
For example:

• The proportion of admitted patients who did not receive treatment within 18 weeks has risen by a fifth – from 6.7% to 8% – with 23,826 missing out.
• The number of people waiting more than the previous target of six weeks for diagnostic tests rose by more than 90% compared with the same period last year.

In short, ill patients are being told to wait longer to receive treatment or to even know what is wrong with them.

All statistics are based on the Department of Health data. I'll continue to blog on waiting time targets, as it is my guess they will continue to rise and rise as the NHS struggles to make £20 billion of efficiency savings by 2014 with just a 0.1% annual increase to their budget in the same period.

Lansley may want to remember that NHS patients are also voters. His decision to scrap targets, which at the time received little coverage, may well come back to haunt him in four years time.

Introducing 'Where's the Benefit?' blog

I've just started contributing to a blog which is focused on highlighting cuts and changes to disabled benefits. Here is a link to my first post.

Going forward, I'll post most of my benefit related blogs on Where's the Benefit? and refocus this blog on all issues to do with the NHS, whether that be treatment, funding, reforms of personal experiences.

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'.