Thursday 24 November 2011

Cameron’s attack on ‘sicknote culture’ could spectacularly backfire

Speaking today to the Daily Mail about sickness benefits, David Cameron couldn’t have been more right when he said the “whole system is in a mess”. But his new proposals are likely to make things worse.

Cameron is keen to “press ahead” with stripping GPs of the ability to sign people off work for more than four weeks. After this period an independent assessor will be needed to verify if that person needs to be off sick. Considering this is the same Government that wants to give control of the majority of the NHS budget to GPs, its faith in local doctors seems surprisingly contradictory.  With the Government still embroiled in arguments with clinicians over its planned NHS reforms, the Government could find there is little appetite for these new proposals with either GPs or the electorate - indeed an Ipsos Mori survey in June this year showed that nearly nine in ten respondents trust their doctors to tell the truth.

What is clear is that, if implemented, these changes will add another expensive layer of bureaucracy onto a benefits system this is already struggling to cope.

Atos Healthcare is the independent assessor contracted by the Government to carry out the Working Capability Assessment (WCA) that the vast majority of applicants for Employment Support Allowance (ESA) must undergo. Frankly, the assessment isn’t working. 40% of decisions that people are ‘fit to work’ are overturned at the appeal stage, and these original decisions are very heavily based on the findings of the WCA. It is not solely ‘borderline’ cases that are eliciting appeals. In June evidence was submitted to a parliamentary select committee that highlighted the case of Mr C who died in the five months between his medical assessment, in which he was declared fit to work, and his appeal hearing. In February this year Scotland’s Evening Times reported the deaths from chronic illnesses of two men who were waiting for appeals to be heard against their recent loss of Incapacity Benefits. I could go on.

The Government already pays Atos £801 million over a ten year period yet, despite many ministerial promises of improvement, it’s clear that the Government has a long way to go until it gets to grips with how to assess how someone’s illness affects their ability to work. Until it manages to get WCA appeal rates under control, there is little point adding another hefty bill to the taxpayer’s purse to extend the number of ill people required to undergo independent assessments.

Cameron says that GPs “resent being asked to sign sicknotes” yet I can’t imagine any GP embracing a system that might tell patients to go back to work against their own doctors’ advice. And what will happen to those patients who are told they are fit to work when they aren’t? Will their pay be stopped while they appeal the decision? Will they face being sacked for ‘lying’ to their employer?

I can only presume that in these tough economic times, in which many people are struggling with the steep rise in the cost of living, Cameron believes that cracking down on “sickness fraud” will be a vote winner amongst the electorate. Yet that argument only holds when the wider public holds an ‘us’ and ‘them’ view – when we believe that it would never be ‘us’ who are presumed to be lying about being ill.

The Government is only getting away with the terrible mess surrounding the WCA, and the staggering £80 million cost to the taxpayer to manage the hefty appeals process, because it isn’t yet seen as a mainstream concern.  As soon as anyone who is off ill for more than 28 days is told to undergo similar tests - and the word spreads about what a hit and miss process it truly is - Cameron could face a massive backlash against his benefits policies. Most people want to work hard and show loyalty to their employer: in exchange they expect to be able to take time off to recover from unexpected illnesses, even if that recovery process takes longer than hoped. I can see few people accepting this greater state intrusion into their lives.

Wednesday 9 November 2011

Global crisis in antibiotic development is a threat to us all

I've just got in from speaking at the parliamentary launch of a new campaign called Antibiotic Action. It was a great morning with a strong attendance of doctors, pharmacists and MPs - including Andy Burnham, shadow health secretary.

The day was to raise awareness about the dire crisis in global antibiotic discovery and development. In 2009, the World Health Organisation announced that antibiotic resistance posed one of the three greatest threats to human health. Yet since then the chronic lack of development of new antibiotics has continued while the antibiotics currently on the market have become less effective.  Indeed by the end of 2012 as little as two new antibiotics are expected to have been created in the preceding four year period, compared to sixteen that were invented between 1983 and 1988. Even more worryingly today one attendee told me that the market for developing antibiotics in Europe is non-existent and very small in the US. Indeed the only country interested in developing these new drugs is China.

Despite the fact that the market for antibiotic investment has effectively collapsed it has so far remained a silent crisis, gaining little recognition amongst the wider public. This is despite the fact that the shortage of effective drugs is one of the causes behind the rise of hospital superbugs – an issue that has seen a slew of Government targets and patient campaign groups to try and eradicate the problem. While it is true that some hospital acquired infections such as MRSA do occur due to dirty wards, the rise of superbugs should act as a warning that bugs are, if you like, becoming cleverer, and that our discovery of antibiotics to treat such infections has not kept pace with such mutations.

The reoccurrence of TB, which at one stage was almost wiped out in the UK, and of a very resistant strain of gonorrhea show that we are dangerously short of new antibiotics in a world of increasingly drug-resistant illnesses. Indeed only last month the Health Protection Agency warned that the most common antibiotic used to treat gonorrhea is no longer effective at combatting the disease, raising the spectre of “the very real threat of untreatable gonorrhoea in the future.”

As someone with an incurable illness, Cystic Fibrosis, who is dependent on a raft of antibiotics to try and maintain my health for as long as possible, I can attest to the cost to society of a rise in untreatable afflictions. Aside from the heavy medical bill associated with treating an incurable illness over a prolonged period of time, the social implications are considerable. If in the future we prove unable to tackle life-threatening infections such as TB than we face a society in which more people will be forced out of the work place due to serious ill-health and increasingly pushed to the sidelines. We need just look at our obesity crisis, and subsequent spiralling diabetes costs, to understand the implications of allowing a health crisis to run out of control.

Today's parliamentary launch of Antibiotic Action called on the Government to form an all-party parliamentary select committee to examine this looming health crisis.  The campaign group has highlighted several underlying issues that need to be overcome to kick-start investment in new drug discovery.  A crucial concern is a lack of return on investment that antibiotics generate for pharmaceutical companies. This is partly due to the cost of clinical trials and the perception by purchasers, such as European Governments, that antibiotics should be low cost. Further, a focus on genome treatments, to cure genetic conditions such as mine, has meant a shift from funding new antibiotics, despite the fact that genome treatments have yet to come to fruition.

Antibiotic Action recognises that researchers, regulators and pharmaceutical companies must now work together to overcome these obstacles as, quite literally, the status quo cannot remain as it is. Unless new antibiotics are developed then the ones that are in current circulation will gradually become less effective as they are overused to treat bugs that have ‘evolved’ to become resistant to the treatment available.

Any further delay in addressing the burgeoning problem threatens the very foundation of 21st century health care that we all demand, as the use of antibiotics underpins the practice of modern medicine. Shocking as it may seem to a post-penicillin society which expects antibiotics to cure life-threatening infections, but without a new generation of antibiotics we face a future in which a patient, who might have survived radiotherapy, kidney transplants or heart surgery is at risk of dying from basic infections caught during after care.

For more info and to support the cause:

Tuesday 11 October 2011

Three reasons to sign the 'Save the NHS' petition

I've been watching the progression through parliament of the Health and Social care bill with alarm. This is a major piece of legislation that MPs don't seem to have given proper time to and it has been waived through the Commons despite mounting protests from GPs, consultants and public demonstrations.

The Bill is now in the House of Lords and the vote is expected to take place tomorrow on whether it will approve the Bill. Below are three reasons you should sign the petition by 38 degrees.This is our last chance to halt the reforms and demand a proper consultation with open explanations of the Bill's intentions. The list below is not comprehensive so please do add more in the comments section.

1. We live in a democracy and the way this Bill has been handled is thoroughly undemocratic. I've posted on this Bill before, but in short the Bill looks to give GP commissioning powers and open up the NHS to'any willing provider' (although this has recently been amended to 'any qualified provider'). Yet these crucial changes are already being enacted across the country with Health Secretary Lansley saying that 97% of the country is now covered by GP commissioning and current Primary Care Trusts are tendering out health contracts to 'alternative providers' (i;e. private companies). This has all happened while the Bill was officially 'paused' by David Cameron. It is unacceptable that any elected Government enacts controversial reforms without the approval of an elected parliament. I would hate the Health Bill to set a dangerous precedent. There is also the glaring fact that these reforms do not have an electoral mandate as they did not figure in either Coalition parties election manifestos.

2. The Bill does not have the backing of the majority of the medical profession. They believe it poses a fundamental risk to patients' health and to the NHS. This should be a major warning sign to us all. After showing patience with the Government, engaging in two consultation processes and cooperating with the Government on suggested changes to the Bill, the community has now come out in desperation calling on the whole Bill to be suspended. If the doctors working in the NHS are against this Bill, then we must question the motivations of the Government to pursue such changes. Either they are arrogant and believe that MPs know the NHS better than people who have dedicated their lives to working in it OR these reforms are nothing to do with improving the NHS.

3. The future implications of the Bill are far from clear. Cameron has promised not to privatise the NHS but the more I think through the proposals this seems like clever word play. The White paper gives commissioning powers to GPs who are officially private employees with NHS contracts. The paper does not say whether giving them commissiong power means that they will automatically becoming employees of the state. The Bill is pushing for the NHS to operate on free market principles in which providers compete for patients, and the Government funding they bring with them. This might explain why the Bill states that all hospitals are to become 'social enterprises' (i.e free from state control) and that those hospitals that can't manage their finances properly will be allowed to fail.

Adding this up in my head, it seems that the Bill is moving us to a state insurance system in which the UK Government doles out cash to private providers yet ultimately will one day not own any hospitals or pay for any staff. This ultimate aim may well be why the Health Bill in its current form doesn't explicitly state that the Health secretary will have ultimate responsibility for the NHS - how could he if the 'NHS' just becomes a pot of money that is divided out between private companies? Would an insurance system be better for the UK? Who knows because there has been no open debate about it as the Government has been so quick to push the Bill through parliament and refused to be honest about where this legislation is leading us.

Please sign the petition. The Government claims that the NHS must reform if it is to remain able to care for an ever increasing and elderly population. That may well be true but this isn't the way to manage such reform. We elect our Government and in turn they should be honest about the problems the NHS faces and the potential ways to manage healthcare in the future. Pushing through undemocratic reforms, which lacks the support of the medical profession and the understanding of the public treats the NHS and the voting public with contempt.

Tuesday 6 September 2011

NHS reforms pose worrying questions for Britain’s democratic process

At the end of April, amid growing condemnation of NHS reforms, the Government asked for a 'pause' in the Health and Social bill to allow it to perform a second consultation. As the third reading of the Health and Social bill starts today it would be fair to assume that a pause in the legislation has translated nto a pause in ground-level implementation. But that hasn’t been the case.

In early July, Lansley announced at the NHS Confederation conference in Manchester, that the 'pause' in the Bill was "over. It's now time to act” - which may explain the speed of reform over the summer.

After last year’s initial consultation process, when doctors said they would struggle to meet the 2013 deadline for all GP surgeries to be part of a local consortium to manage NHS budgets, Lansley declared in December 2010 he would “press ahead immediately with pathfinders of emerging GP consortia”. Ostensibly they would blaze a trail for the proposed reforms and help the Government discover any potential future pitfalls in the plan. However, since the Bill is yet to pass, these consortiums are operating “under existing legislation”. At best this seems undemocratic as, according to Lansley himself, 97% of the population is now covered by these consortia without any legislative change to account for this rapid transition.

This leaves the NHS reforms in a muddle as, in a speech at University College London Hospital in June, David Cameron scrapped the 2013 deadline for GPs to take on full commissioning responsibility. With PCTs already offloading staff (Freedom of information requests from 54 PCTs show that at least 2010 jobs have been shed through a combination of redundancies, unfilled posts and mutually agreed resignation) and some consortia further advanced then others, what will fill this authority vacuum?

A recent investigation by trade magazine Pulse found that only 84 PCT-led GP surgeries now exist in England and PCTs are re-tendering existing PCTMS contracts (for which they are directly responsible) under the belief that any such contracts still in existence by April 2013 will not be legal as PCTs will not exist. Of the four types of alternative contracts the PCTs could choose, 41 of these 84 practices have had, or are in the process of having, their contracts retendered under Alternative Provider Medical Services (APMS), which has been specifically designed to broaden the range of providers that GPs can commission from. In short it allows private companies to bid for GP contracts. Unison has said of APMS contracts: "Worryingly, APMS contracts allow for increased privatisation of primary care services and a profit-driven approach to health care provision".

Just as worryingly, some PCTs want to put out to tender entire care pathways, opening up its patient care provision to private companies. According to Pulse: "NHS East of England plans to auction off £300m of services to GPs, private companies or a combination of the two, in pathways including respiratory and musculoskeletal medicine." A further eight PCTs are expected to follow suit.

Yet the health bill’s most contentious aspect has been the desire to open up the NHS to “any willing provider”. Following strong criticism, the wording in the Bill is likely to be changed to “any qualified provider” meaning that all providers would have to meet a set of standards – yet as these are yet to be agreed upon, it seems the offloading of entire care pathways is moving faster than the legislation that allows it to.

Finally, the Department of Health has announced that Hinchingbrooke NHS hospital in Cambridgeshire has been given the go ahead to be run by a private company, called Circle Health, as long as the Treasury approves it’s “viability” . This contract has been given an initial green light despite the fact that the company in its recent flotation document warned that a profit might "become unachievable". Having watched the disastrous collapse of care homes operator Southern Cross, putting many patients at risk of becoming homeless, it seems extraordinary that the Government is considering allowing a company to take over a hospital when it has openly announced it may struggle to make and maintain a profit. This will call into question the long-term survival of Hinchingbrooke or the need for a Government bail-out should Circle Health fail to keep its investors happy.

When they return to debate the Health and Social Bill this week, I think many MPs will be shocked at the pace and extent of ground-level reforms. It seems almost inevitable now that GPs will take on some form of commissioning as PCTs have all but dismantled themselves, even though the Bill allowing this to happen has yet to be signed off. Meanwhile private companies are already sniffing out profits by taking on GP contracts, care pathways and even whole NHS hospitals. It poses worrying questions for Britain’s democratic process when the sitting Government pushes ahead with reforms while intense debate in the Commons has by no means reached its conclusion.

Monday 11 July 2011

Increased waiting times signal Government is losing control of NHS funding

A few stories in today's press got me thinking today. The first is about a man who is taking the NHS to court for refusing him a gastric bypass as, at 43, his BMI is not high enough to warrant the operation. The Daily Mail has responded to this in its typical manner with a headline screaming: 'Give me a gastric bypass! It's my human right'. Although many of the Mail's headlines are unfair this one is particularly harsh. The man in question has type 2 diabetes which has already caused him blindness in one eye, complications with his kidneys and he is now a wheelchair user. A gastric bypass has been shown to cure type 2 diabetes so this operation could literally save his life. He has already asked his Primary Care Trust (PCT) to deviate from their normal 'rules' over who is entitled to the operation on the grounds his other health issues make him an exceptional case. Yet his application was rejected. Moreover if he had lived in the neighbouring PCT he would have received the bypass without any appeals as they allow the operation for anyone with a BMI over 35.

Another article that caught my attention was a piece in the Guardian showing that NHS waiting times are increasing. The Guardian revealed that "The number of patients waiting more than six weeks for a diagnostic test has risen from 3,378 to 15,667 in the last year". Even more outrageous is "the small but growing number of cancer patients having to wait more than one or two months for treatment". This has left doctors to make the point that such delays could ultimately mean the difference between cancer killing their patients or not.

I'm not going to delve into the emotional stress faced by people waiting for diagnostic tests but instead will use the Coalition's favourite argument for reforms and talk in monetary terms.

It is clear to any rational person that delaying treatment for cancer patients or for those who are critically obese will cost the NHS more money in the long-term. Cancer that takes longer to cure costs the NHS more in bed space, consultancy time and medicine. A man who's obesity is causing diabetes to threaten his kidneys and his ability to walk will also increase costs to society, both medically and in social care.

I've spoken many times about the fact that the NHS is meant to be saving 4% every year for the next four years. Many economists believe this is impossible and as these heath rationing stories increase it seems that they are right. And what is this health rationing to achieve? Ill patients don't get better without treatment so clearly the costs won't go away unless patients are left to die or, as perhaps the Government hopes, seek private treatment.

To meet today's monetary targets, tomorrow's will be astronomical. This is seriously a case of false economics.And as we are only in year two of a five year cost saving plan it can only get worse. If something doesn't change waiting lists will soar.

The Government is so focused on pushing through its radical NHS reform plans, it seems to have lost the will to keep today's NHS functioning. Instead we are left with a postcode lottery of care and a Government insisting that waiting lists are 'broadly stable'. Tell that to the cancer patient who had to wait two months to start treatment.

Wednesday 1 June 2011

The Winterbourne abuse scandal provides a stark warning against NHS privatisation

This week's Panorama about systematic abuse of patients at Winterbourne View private care home was shocking and uncomfortable television. Yet behind the fear of the patients, routinely and daily abused by their carers, was a story to be told about how private companies operate in social care. And it is a story we must pay urgent attention to as our Government looks to open up mainstream NHS treatment to 'any willing provider' - exactly what has already happened in social care.

What truly shocked me about the Panorama programme, wasn't just the terrible individuals metting out suffering to vulnerable young adults, but the complete failure of the Care Quality Commission to identify the abuse. CQC is the Government regulator of social care providers, it is meant to ensure that private health providers that win Government contracts ensure that quality of service does not come a lowly second to a profit motive. Yet during three inspections of the unit the CQC did not uncover any inappropriate behaviour and, even more worryingly, it failed to act on three emails it received from a highly qualified nurse who used to work at Winterbourne which detailed the abuse at the unit. The question is: how many other units have passed a CQC inspection are also hiding dark secrets?

Whereas social care has already been opened up to private providers, the health service is still largely nationalised. Yet the Government's controversial Health and Social care bill wishes to allows 'any willing provider' such as private companies and charities to compete for health contracts. The Government will be reliant on the CQC and 'people power' to ensure these providers are of good quality.

Lansley in speaking with the Guardian in February believes that people will 'vote with their feet' and go elsewhere if the health service they receive is not good enough. I've doubted this is possible since I heard this claim - a person's ability to maintain family life and jobs relies very often on accessing local health care regardless of its quality. But the scandal of Winterbourne shows that very vulnerable people cannot exercise a choice at all. Which would leave them at the mercy of the CQC to ensure "quality and safety" from their health provider - if the CQC is already struggling to identify problem providers can it really be trusted to do so in the future with a vastly expanded portfolio of providers to oversee?

Moreover, while the Panorama programme caught the nation's attention over extreme abuse, it would be terrible if we saw a patient's basic safety as the only target to aim for. The documentary also showed that the patients, in the words of an expert, 'had nothing to do' day in and day out. Disgracefully the Government pays £3,500 a week for each patient to live there but other than basic carer supervision there appears no programme of activities or experiences that might enable a person to learn how to gain independence and move out of the institution. Where is the quality or value for money there? Winterbourne is meant to be a therapeutic environment yet one can only imagine that once Castlebeck, the company behind Winterbourne, creamed off its profits there was only enough money left for basic care.

The same day the Winterbourne scandal hit the nation's papers the alarm was also sounded on the financial fragility of Southern Cross, a provider of care homes for 31,000 elderly residents. City analysts believe that a series of poor decisions taken when it was owned by a private equity company have brought the care home to its knees, generating real fear amongst residents as to what will happen to them if the business folds.

There is no suggestion that care at Southern Cross is in anyway substandard but its financial concerns yet again leave highly vulnerable people exposed by the machinations of a private company in the pursuit of profit over consistent and reliable care.

I only hope that the public recognises that these simultaneous failures in social care are stark warnings of what could happen to our health care system if private companies are allowed to cherry pick services it wishes to offer, gleaning off profit at the very expense of the people it is meant to be providing a first-rate service to. At the very least, the CQC must not be given any more 'providers' to oversee until it has become apparent how widespread its failure runs, people are held to account, and meaningful reforms are implemented.

Thursday 12 May 2011

Are disability cuts just aimed at 'scroungers'?

I'm in hospital for the next couple of weeks trying to get healthy for my upcoming wedding (one month to go!). I've just taken part in a Guardian panel piece about yesterday's Hardest Hit March which demonstrated against the Government's plethora of cuts against disabled people.

I know there seems to be a prevailing concept in the wider society that these cuts are justified because it is only effecting those that aren't truly ill and just want an easy life. But that really isn't the case. I wasn't well enough to go on the march yesterday so to do my bit I've compiled some news stories about how disabled people are already being effected by cuts and their fears for the future. Please just spend thirty minutes reading around the issue with an open mind.

The Guardian is obviously a good place to start but there have been stories cropping up in even the more right wing media. Here's a selection of writing to get everyone thinking:
Guardian: Disabled people are marching for their lives
Guardian: It is now officially unsustainable to support disabled people
The Sun: No Cash as leg may grow back
The Mirror: Amputee loses benefit after walking
Scotland's Evening Times: Call for fairer benefits test as men [declared fit to work] die
Guardian: 'The Medical was an absolute joke' Heavily researched piece on flawed ESA medical tests
The Independent: Disability charities raise welfare concerns

Tuesday 3 May 2011

Are 85 hospitals under threat of closure?

A good day to hide bad news seems to be becoming a modern day adage in UK politics, and the Royal Wedding last Friday proved no exception. While the nation was giddy with nuptial fever, Monitor, the regulator of NHS Foundation trusts warned that hospitals may have to make 'efficiency savings' of 6 - 7% for each of the next five years. This is even worse than the original target set by the Department of Health of 4% for each year.

Worryingly these 'savings' were highlighted in a letter to Foundation Trust (FT) applicants - i.e. hospitals that wish to become a Foundation Trust but haven't yet. The Government has set a deadline of April 2014 for the remaining 85 hospitals and mental health units to achieve FT status. As such to become an FT they MUST achieve the financial savings demanded by Monitor. Aside from the fact that 'enforced savings' are really just a euphemism for cuts, the real question is what happens if these hospitals cannot achieve such savage savings?

The Government has avoided providing a Plan B for such hospitals, and it is unclear whether a hospital will  be allowed FT status even if it is unable demonstrate it can balance its books under such stringent demands. An alternative would be to allow an extension to the April 2014 deadline (a possibility considering the climbdown on the GP commissioning deadline). But a third option is also very possible: hospitals will just be allowed to close down.

 The 'Liberating the NHS: Legislative framework and next steps' document recognises that some "organisations" will not manage to "thrive" under the "tough financial times ahead". As a clear warning to those that struggle to balance their books, it states on page 134:
 "Taxpayers' funding needs to be used to pay for the services that patients need, not to prop up failing organisations that make ineffective use of the resources they receive. The transitional arrangements will ensure that there is no unnecessary failure: if there are simple steps that can be taken to make an organisation succeed Monitor will retain a role during the transition to ensure that these steps are taken." (My own italics)

Furthermore, Dr David Bennett, head of the economic regulator Monitor, admitted to the BBC in March, that hospitals that get into financial difficulty will "ultimately close". So clearly the Government can envisage a scenario where a hospital will be allowed to fail and the implicit assumption is that the Government will place the blame squarely on that hospital for doing so.

Yet this is incredibly unfair on those hospitals that are yet to achieve FT status. They are now attempting to do so under a harsher remit than any of those who have achieved it to date: indeed these savings are so tough that leading health economists doubt they are achievable.

A 4% saving has already been criticised as unrealistic by health economists. But speaking to the BBC about these latest statistics, John Appleby, chief economist at the health think tank the King's Fund said: "I can see a hospital doing this [6% savings] for one or two years, but not five years".

So either the financial bar has been set so high as to be intentionally unachievable (allowing the Government to prune its expensive stock of hospitals) or the Government has no real understanding of what a 6% saving actually means to a hospital. Either way by 2014 patients will be understandably angry if their local hospital is under threat of closure, when in reality it was the savings targets themselves that were financially unviable, not the hospital struggling to meet them.

Tuesday 12 April 2011

Widespread genetic screening risks creating 'inferior' citizens

Back in 1995, my 14-year-old self was sitting on the dusty floor of my all-girls’ school hall listening to a morning assembly. With the aim of promoting public speaking, each class had to give one annual school assembly speech on a topic of their choosing. That morning it was the turn of five 11-year-olds who had decided to tackle a topic beyond their years: abortion. At 8.50am on one nondescript Spring morning my whole life was pronounced worthless as they declared that mothers carrying foetuses with Cystic Fibrosis (CF) would understandably want a termination. As a CF sufferer myself, I laughed aloud at the suggestion.  Even as the illness has slowly ruined my lungs over the years, my life is still definitely one that is worth living.

Yet a report out this week by the Human Genetics Commission reminded me of those thoughtless 11-year-olds. Its pronouncement that they see “no specific social, ethical or legal principles" against offering nationwide preconception screening of genetic conditions seemed, at best, ill thought through.

In its report, ‘Increasing options, informing choice’, the Commission recommends that any person should be eligible for tests to show whether they are a carrier of genetic abnormalities that could result in their child being born with illnesses such as CF or Sickle Cell Anemia. Currently such tests are limited to people who already know there is a family risk of such illnesses.

The report believes that by widening out pre-screening to every potential parent in the UK people “can make informed choices about the reproductive options available to them.” Yet these choices seem to be very limited: remain childless, have an abortion, or endure lengthy, and possibly futile, IVF treatment.

It is possible to carry out an antenatal test called Chorionic villus sampling to see whether a foetus has CF, so that the family can choose to abort the pregnancy before birth.  Cystic Fibrosis is a tough illness and it cuts life expectancy by at least 50%. Yet people with CF can live a relatively normal life for long periods of time. We have active childhoods, careers of our choosing and a life lived independently. I have a great life full of amazing friends. I’ve had a brilliant education, a good career, and even now when my health is really quite bad I live with an amazing man who I’m marrying in two months’ time. Is this a life that would have been better aborted?

Moreover, it is easy to imagine a scenario where a childless couple in their fifties may look back on multiple abortions, undergone due to fear of bringing up a child with CF, and wonder if it wouldn’t have been better to have experienced parenthood with all the hardships and happiness it would have brought with it. Perhaps the knowledge that pre-screening brings may be as painful as the very grief it was aimed at avoiding.

If both parents are a carrier of the defective CF gene, IVF is the only way to be sure of not conceiving a child with CF. In a process called Pre-implantation Genetic Diagnosis (PGD) each embryo is screened to ensure it is genetically ‘normal’ before implantation in the womb: there is at best a 30% success rate. But with NHS funding currently under strain, IVF is being severely limited across the country. In the last three years, nearly one in five Primary Care Trusts (PCTs) have cut IVF funding, with nine areas refusing funding altogether. Even fewer PCTs are prepared to pay for PGD in comparison with traditional IVF procedures and privately the procedure costs £3,000 per attempt.

It would be a nightmare scenario if CF became a ‘poor’ person’s illness, only prevalent in parts of society that cannot afford private PGD sessions. What implications will this have into research for a cure, or for NHS and welfare provisions for people with such illnesses?

It is unsurprising that Dr David King, director of Human Genetics Alert, said that if the report recommendations were put into action "it will inevitably lead to young people [diagnosed as carriers] being stigmatised and becoming unmarriageable, and disabled people will feel even more threatened."

For me the recommendations of the Human Genetics Commission imply that a life with CF, or Sickle Cell, or any other serious genetic illness, is a life not worth living. Ultimately no one chooses to have CF but isn’t that different to taking active steps to avoid having a child with CF? The Commission seems ignorant of the fact that people with severe illnesses have a lot to give, both to the people who love them and the society of which they are a part.

Everyone has hardships in their life, and CF is mine, but living with it has given me strength as well as pain. Rather than encouraging people to consider children with genetic illnesses as inferior, it should be recognised that our society is in fact strengthened when it comprises a diverse range of people with their own unique way of living their life as best they can.

Thursday 17 March 2011

Are Lansley's days well and truly numbered?

I would love to be a fly on the wall in the Government's health department at the moment as the department's policies have recently been attacked from all directions. Health charities, coalition MPs and nationwide GPs have very publicly criticised different aspects of the Government's health policies and I would think that Andrew Lansley, the Secretary of State for Health, will probably spend the upcoming weekend contemplating how much longer he can cling to his post.

To give you some background, Lansley was Shadow secretary for health for ten years before the Tories formed a Government last year. It seems that spending such a long time in a single role in opposition has left Lansley with incredibly ambitious ideas that seem one step removed from the practical reality of a country with a shaky economy. Indeed so protective has Lansley been of his department, rumours have been circulating that it has isolated itself from all other Government offices. A BBC World at One report earlier this year revealed that Cameron has increased the number of policy advisors at Number 10 so he could get a better understanding of the health policy that Lansley has been guarding behind closed doors.

Back in 2001, Britain was starting a decade of cheap credit, low cost of living and continuous growth. As the decade progressed, Lansley could be forgiven for thinking our country was stable enough to allow for the biggest reorganisation of the NHS since its inception in 1948. However, so keen is Lansley to unleash plans that were so long in the making, he seems unwilling to recognise that the country is very different to what he had envisioned. Lansley's NHS reorganisation is meant to cost anywhere between £1.4 and £3 billion pounds - and with the UK supporting a massive deficit it is no wonder the nation is wondering if we can afford these changes right now. Moreover the meltdown of the UK banks has left our country more political. Whereas in the good years we might have been too busy buying expensive clothes on credit and binge drinking away our weekends to criticise our politicians, in our current sober times more and more British people are vocally questioning Government policies.

Yet despite this climate, Lansley announced a "revolution" of our NHS when he released his department's NHS white paper last July. As doctors, health charities, journalists, patients and opposition MPs have begun to understand the implications of this white paper, the dissent has slowly risen. Even Cameron's direct media intervention earlier this year to help 'sell' the Government's NHS white paper has done little to assuage mounting criticism. Cameron may now be calling the NHS changes an "evolution" instead of a "revolution" but many still believe his NHS proposals are leading us down the road of privatisation.

And so to this week. The British Medical Association called an emergency meeting, the first for 17 years, in which GPs voted in favour of the motion that Lansley entirely withdraw the Health bill currently going through parliament and halt reorganisation plans. In separate news, on Monday six health groups refused to sign up to the Government's 'responsibility deal' on alcohol saying that the voluntary measures do not ask enough of the drinks industry. Don Shenker, Chief executive of Alcohol Concern, said that the Government's public health policy's "first priority is to side with big business and protect profits". Finally, Lib Dem activists have voted overwhelmingly to reject the Coalition's NHS reforms as they believe they are unjustified and will be highly damaging.

So where to now? My feeling is that David Cameron will fall back on his old PR background and consider that the way to win round voters is to alter the presentation of NHS reforms. And perhaps he will conclude that Andrew 'Revolution' Lansley is now too toxic a figure to be spearheading such divisive changes. Such a move would suit Clegg as well who, after the fallout of tuition fees, has to show his party that he has listened to their doubts. So I think Lansley's days are numbered and if rumours on Twitter are to be believed a possible replacement might be Grant Shapps, currently the minister for housing and local Government.

But Clegg and Cameron should be warned. A change of Minister might win them some breathing space but they will still have a case to answer as to where the electoral mandate is for such reforms. Neither the Tory or Lib Dem manifestos mentioned such sweeping changes to the NHS, and the Coalition document was also silent on the issue. Lansley may well be forced to fall on his sword but that sword is razor sharp and capable of taking many more victims.

Tuesday 8 March 2011

How CF and heart surgery reveal a gap in GP commissioning

As GPs across the country grapple with how best to commission care for their users, the King's Fund raised serious concern last week about how groups of GP consortia can be expected to understand the complexities of our nationwide hospital provision.

In a report out earlier this month called Reconfiguring Hospital Services, the King's Fund says that sorting out how to improve the quality of hospital care may well result in closing some hospitals or consolidating what services each hospital offers. They are concerned that the impending abolishment of strategic health authorities, along with Primary Care Trusts, means that there will be no umbrella view of hospital services and stress that, in their opinion, "Market forces alone are unlikely to result in improvements in quality of care for patients in many hospitals, and could result in deterioration in some cases".

A classic case of such complexities is the current Government review of Specialist services which is currently looking into which hospitals in the UK will provide congenital heart surgery for children. It is recommending that such procedures are carried out in just six or seven hospitals in the future which means that of the four current London providers only two will remain.

The reasons for consolidating care aren't just concerned with funding. There is evidence to suggest that the more surgery a surgeon performs the better he becomes at it and, in addition, the larger the hospital the better the survival rates. This isn't rocket science: one of my first ever posts discussed a surgeon's success in terms of Malcolm Gladwell's theory that it takes 10,000 hours of practice to become great at something.

But while there may be a case for reducing such nationwide congenital surgery centres from 11 to 6 or 7, there are unexpected consequences for those patients who don't have congenital heart conditions but also receive treatment at the hospitals under scrutiny.

The Government's review currently favours maintaining congenital heart surgery at Great Ormond Street Hospital and Evelina Children's hospital, which means Brompton Hospital in London would lose its ability to offer this treatment. I was surprised to hear that the Cystic Fibrosis Trust is campaigning against the Brompton hospital losing its congenital heart care. I'm a CF patient at Brompton and I didn't see the connection.

But the CF Trust is worried that if Brompton loses its ability to provide congenital heart care then it will not have the patient base to justify it having a children's intensive care unit and anaesthesia service. Which means that the care available for paedeatric CF patients will be inadequate. This in turn places additional stress on the other three London hospitals that look after CF patients as they would need to find clinic space and bed space for over 300 additional patients that are currently looked after by Brompton.

And for me, an adult CF patient, it makes me worry that there will be a knock-on effect on the care I receive at Brompton as there would no longer be a future patient base of CF children that would grow up to need an adult CF service. Brompton provides world-class care for Cystic Fibrosis patients so surely it can't be intentional that this service is now under threat?

This does all sound complicated, but it is this detailed understanding of the demands on individual hospitals and the ability to foresee the effects of curtailing certain patient services that the Government must retain. The concern is whether GP consortia will be able to get to grips with the reforms that hospitals will require without the quality of care being affected for all the many patient types that use each hospital.

The King's Fund believes that GP consortia will not have the experience or size to implement major service improvements in hospitals and is urging that the Government's new NHS Commissioning Board be given greater powers to strategically plan hospital services. It argues that without these powers the system will gravitate to a 'market forces' model and this will not provide any improvement in the quality of care patients receive. And remember, the Government promises that a key aim behind its proposed overhaul of the NHS is to improve care - it is clear to me that to do this the Government must start looking at the limitations of GP commissioning as well at the advantages.

Wednesday 23 February 2011

NHS reforms: Patient choice may have positive side-effects

Patient choice is a key element behind Lansley's reforms. The idea is that choice will help health services will improve without the need for central management. Patients will "vote with their feet" and only use good services, leaving those NHS providers who aren't good at what they do to either improve or close down.

I'm not too sure what I'd feel if I was one of the poor patients who had to suffer bad treatment before the rest of us all cottoned on and ran screaming from the hospital, but that aside, this idea of patient choice may actual have the knock-on effect of being beneficial for our health.

To help manage my Cystic Fibrosis, I constantly self-monitor my health. Off by heart I know my hospital number, weight to 0.1 of a kg, height, average pulse rate, average oxygen saturation in my blood, and all my lung function stats. I actually know when I'm more ill than my lung function stats would suggest and I get to have a big say in what treatment I have. For example, my hospital constantly tell me to put on weight so I've just asked them to send me a clinical study of the long-term health benefits for CF patients if they are over a BMI of 19.

It may seem weird that I like to know the medical facts and figures behind everything, but the more I understand the importance of my medicine the more likely I am to make the extra effort to take it all - and believe me, there is a lot to take.

So it made me realise that the idea of informed choice behind the NHS reforms might actually improve our individual health as well as the performance of health providers. If we feel actively involved in our own treatment we may be more likely to take our drugs and take note of all the other bits and pieces we can all do to help our treatment work more quickly: eat better, exercise more and sleep regularly.

Moreover, if we feel like we are in control of our treatment it might make us feel more positive about coping while ill and motivate us to get better as soon as possible.

Working out how to get us to self-manage our health better is definitely a shift that the whole of society needs to make. With obesity levels and alcohol abuse on the rise, the whole country needs to recognise that good health starts with us. Any NHS system that advocates public health awareness but simultaneously fails to provide a choice in treatment of specific health-problems is sending out mixed messages to us all.

Patient choice may not prove effective at deciding which companies should provide our NHS care but the drive to provide greater information and choice to patients could be an interesting way to get us to think again about our own responsibility towards our individual health.

Wednesday 2 February 2011

Time to rethink the approach to NHS reforms

The first debate of the NHS reforms took place on Monday, and the second reading of the bill was passed with 321 MPs voting for and 235 voting against. It followed six hours of debating.

But while MPs are battling each other in the House of Commons, they are also trying to win over the public to their plans. So wide-reaching are the reforms, it has taken a while for health journalists to fully realise the implications, let alone the general public who have very little understanding of the NHS machinations at work behind their GP surgery.

This week has been full of statistics and surveys aimed at influencing the direction of the debate. While the reforms are focused on giving power to the GPs over the way NHS money is spent, it is the MPs who will decide whether the reforms are happening. So GPs, powerless in the face of empowerment, are using the media to bang on the doors of the Commons. A snapshot survey of the Royal College of General Practitioners, found that of 1,800 responses, 70% disagreed or strongly disagreed that patient outcomes would improve by opening up the NHS to private companies. 50% also felt GP commissioning would not give more power to patients.

And the MPs themselves have resorted to throwing statistics at the press in the hope of making their opinion the dominant story in the papers. Shadow health secretary John Healey claimed that 3 out of every 4 GPs disagreed that NHS reforms would improve patient changes. (The excellent blog Factcheck questioned the veracity of this stat though).

The Tories have hit back at Labour claiming these reforms were begun in part by Blair's Government. I'm currently reading Andrew Rawnsley's brilliant book 'End of the Party' about the last two terms of the Labour Government. He continually highlights Blair's frustration at being unable to make great public service reforms. In a 2002 interview with Rawnsley, Blair said: "We will not maintain public services and the welfare state unless we radically recast them" (pg76). He wanted to introduce choice to the users of the NHS and diversity of providers, hoping the third sector and private companies would tender for contracts. His reforms were watered down due to party opposition, but it is clear that parts of New Labour were of the same mind as the Tories now are.

So the questions is, why can't we all have a sensible conversation about it?

If the parties are both thinking the same thing - that the NHS must change before it starts to fall-apart - then perhaps an honest conversation with the British public is required. In which the case for change is explained and a realistic time-frame is established for such measures. Perhaps the first step is to start on the path to GP commissioning, but in a more balanced, state-managed way rather then the piecemeal free-for-all that is currently being considered. Once commissioning is up and running then the next step might be to consider what benefit, if any, private companies can bring to the NHS.

In contrast, it is clear to me that the current state of affairs in which GPs are fighting to be heard and the public haven't even been asked their opinion will just result in chaos. The BMA today even said a strike over NHS reforms is a possibility.

As plans currently stand reforms could result in a wildly variant health-service - with some GPs succeeding with commissioning while others fail, and private companies taking advantage of the mess to take over services that undermine the viability of NHS hospitals.

The first step of reforms must be to accept that the NHS, which has been developing for 60 years, cannot be recast in just 60 months. And if reforms cannot be implemented before a general election, and a possible change-over of power, perhaps the fate of much-loved British institution is deserving of the parties to come together and work towards strong, effective and safe reforms for the NHS, which override party politics.

MPs that spend less time fighting each other could then spend more time listening to the opinion of those affected: medics, nurses and us, the service user.

Wednesday 26 January 2011

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.
  • Click here to find out more!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.

Tuesday 25 January 2011

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.

Wednesday 19 January 2011

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.

Thursday 6 January 2011

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.