Is the NHS collection of patient identifiable data of women with FGM unethical and a breach of confidentiality?

16/08/2015 Comments Off on Is the NHS collection of patient identifiable data of women with FGM unethical and a breach of confidentiality?

Female genital mutilation (FGM) has been illegal in the UK since 1985, and taking a child abroad to undergo FGM, as legislated in the 2003 Female Genital Mutilation Act and 2015 Serious Crime Act is also illegal and is recognised as a form of child abuse. Until 2014, however, no one had been prosecuted  for FGM and to date, no one has been convicted of this crime.

In response to calls for ‘something to be done’ to address this failing, the UK government has taken a number of steps. They include encouraging the Crown Prosecution Service to scour the landscape for possible perpetrators, sending the Police to airports to hand out leaflets to suspicious travellers and tell them that FGM is illegal, and encouraging Border Agency staff to be on the lookout for victims who might have undergone the procedure abroad, particularly during the so-called ‘cutting season’ (summer holidays).

New regulations and guidance have also been issued to professionals. Among them has been a requirement to gather data on the prevalence of FGM among girls and women living in the UK. Contrary to long-established practice in epidemiological study, however, the data include a long list of identifying information on the women, including their names and NHS numbers, and the governmental Health and Social Care Information Centre are being sent this data, quarterly, since April 2015.

Epidemiology, according to a BMJ handbook, is “the study of how often diseases occur in different groups of people and why. Epidemiological information is used to plan and evaluate strategies to prevent illness and as a guide to the management of patients in whom disease has already developed.” Epidemiological study requires the identification of the population at risk. Not everyone with a disease or who is at risk is studied, however; rather, a representative, sample population is identified for study. Individuals being studied remain anonymous because the aim is not to study or treat individuals, but to study them as a population group, through random selection among those at risk. There is almost never an attempt to find everyone who may be at risk or affected, but only a representative sample. On the basis of this information, health professionals can be trained in addressing the disease concerned and services directed at those who need them.

FGM is not a disease, of course, but a harmful traditional practice, However, FGM is not a new condition nor one about which little is known. For women with problems arising from FGM, a number of NHS specialist centres have existed in Britain for many years and provide care for women with these problems. They are staffed by specialist clinicians, mainly midwives and doctors.

Still, the study of FGM epidemiologically is valid in that the findings can be used to ensure that the services women may need can be planned and made accessible to them. It has long been recognised that some of the women who migrated to the UK from FGM-practising countries had experienced FGM as children in their country of origin. Bindel estimated that the numbers could be as high as 170,000. A provisional estimate of FGM prevalence in England and Wales, published by City University and Equality Now in 2014, however, suggested this figure was 137,000 women and girls. This is a not inconsiderable difference. (Note: Neither the Bindel nor the City University data were accessible on the web at this writing.)

In the latter estimate, prevalence data were “derived from reports of household interview surveys in 2011 in the countries in which FGM is practised and extrapolated to the number of women living here who came from those countries of origin. Thus, the figure is based on two sets of estimates. Yet another study published by the UN Refugee Agency looked at the number of initial applications for asylum from women from FGM-practising countries, to Europe, covering the UK between 2009 and 2011. It found that an average of 2,350 females per year had applied for asylum in the UK. This does not mean all of them were granted asylum or had entered the country, nor that they even had FGM. So the value of these numbers is dubious.

What is certain is that none of these estimates were derived from a bona fide epidemiological study and should never have been accepted and treated by officials, the media or campaigners as if they were. But they were, and they continue to be cited by those pressurising the government to ‘do something’. In reality, there are no accurate data on the number of women in this country who have undergone FGM. Nor is there evidence that FGM is being carried out in the UK on children. Although it is presumed that some British families take their girl children back to where their relatives came from or elsewhere for FGM, the numbers involved are also unknown. These are all good reasons for why accurate epidemiological data should be collected. So, how is the government addressing this need?

Starting in 2014, the Department of Health (DH) mandated that the Health & Social Care Information Centre (HSCIC) collect monthly prevalence data from NHS health professionals working in acute hospital settings, of women who had previously been identified and were being treated for FGM-related or non-FGM-related conditions, as well as newly identified women. This continued to March 2015.

Then in April 2015, prevalence data collection was replaced by an FGM enhanced dataset. Clinicians in England, working in Acute Trusts, Mental Health Trusts and GP Practices now have to record demographic and other data (including patient identifiable data) when a patient with FGM is identified during a consultation for health care of any kind, including the type of FGM she has undergone. The data has to be entered every time the woman or girl seeks care or gives birth to a baby girl (because the baby may be at risk of being subjected to FGM), and every time FGM is identified (by a clinician or self-reported), not just the first time. The data must be sent quarterly to the HSCIC. But this is not the way to do an epidemiological prevalence study. How is it different?

First, its goal is to record data on every woman and girl found to have had FGM. This is neither necessary or cost-effective since the point of epidemiological studies is to obtain representative data on the “group”, not the individuals.

The sort of ‘blanket’ data collection demanded by the DH was not even carried out to identify people living with HIV, for example, even after the extent of the epidemic became clear. Although it was certainly proposed, it caused a great deal of debate and controversy ‒ and was rejected. People living with HIV fought against named data collection as a violation of privacy and medical confidentiality, and as a human rights issue ‒ not only because of the stigma related to being identified as having HIV or AIDS, but also because, in those early days, there was no benefit for patients as no treatment had been developed.

Are not the rights of patients with FGM also being violated when they are identified and recorded as having had FGM? Some activists who have undergone FGM have expressed feelings of being stigmatised and fear of speaking out about it. But unlike with HIV, this fear is because their families are also implicated and might be exposed. Perhaps they do not want themselves and their families to be investigated by the justice system? Or they may be afraid of the racism and condemnation resulting from such exposure?

Secondly, the HSCIC regulations now require that a host of information be recorded, with or without the patient’s permission. The mandatory and required (i.e. if appropriate) non-pregnancy-related data that must be collected include: the woman’s full name, birth date, post code, NHS number, country of birth, country of origin, GP practice, care contact date, details of referring organisation, details of treatment site, existence and type of FGM, details of de-infibulation, pregnancy status indicator, FGM family history, number of daughters under 18, that the woman was advised on the health implications of FGM and on the illegalities of FGM, daughter/s born at this attendance, woman’s age at FGM and country. Optional information includes age and country of origin of the father of any the woman’s daughters aged under 18.

Ironically, despite all of the claims in these regulations that the main purposes of interviewing women who have had FGM is to record information that will be used to help them, there are no questions on the form asking health professionals to confirm that they have given women information on where to find clinical, psychological or social support for FGM if it is needed.

I can understand that recording a woman’s NHS number might be considered necessary to avoid the possibility that, with totally anonymised data, a woman with FGM who attends for health care in more than one place might well be counted more than once. This is a valid concern, considering the flaws in the initial regulations. However, in my opinion, there are serious new concerns here no matter which way one looks at it. The value and purpose of the extent of the information health professionals are now required to record is, epidemiologically speaking, highly questionable, despite HSCIC reassurance that no patient identifiable data (PID) will ever be published. This is because the woman’s personal data may be handed over to the police, social care authorities or the courts if she has girl children who are deemed, during the course of data collection or afterwards, to be at risk of FGM.

This is because FGM is not just a health condition, it is a crime. Consequently, only one of the purposes of data collection by the HSCIC is to determine prevalence and to make information and treatment available to women and girls as victims. Another is to share the information with other governmental authorities, so that they can investigate whether these same women’s daughters are at risk of becoming the next generation’s victims, thereby turning the adult victim into a potential perpetrator or accessory to the same crime she herself was the victim of.

On top of this, even if she does not give her consent to do so, the victim is required to provide health professionals information about herself. On page 48 (of 53 pages), the regulations say: “It is not intended that patient-identifiable data will be shared with other parties. Such activity would require explicit patient consent…. It is intended, however, that the FGM information collected and disseminated using the Clinical Audit Platform will support the publication of patient-anonymised Official Statistics.”

Yet the next paragraph on the same page says: “As the FGM Enhanced Dataset will be underpinned as a result of Department of Health directions, this will require no explicit patient consent to be sought in order to collect this information and subsequently share this with HSCIC. However, each patient where FGM information has been identified by a healthcare organisation, must inform each woman or girl as to how and what will happen to the information being recorded, and further to this, where an objection to this is made each organisation must ensure it understands the fair processing procedures outlining where a woman can contact to make an objection to this information being recorded and sent to the HSCIC.” A long set of instructions on how to handle this follows.

Moreover, it also says that the woman can only register a complaint after the fact, that is, after the data have been recorded, but her complaint will not stop her data being retained and used by the HSCIC. It seems that the Health and Social Care Act 2012 allows health professionals to violate women’s informed consent in this way. This is certainly a violation of privacy and confidentiality that must be challenged.

Pregnant women generally come under a lot of scrutiny. Pregnant women with FGM come under particular scrutiny. The HSCIC requirements say that all existing maternity discharge information sent to GPs and health visitors MUST [their emphasis] also include all relevant FGM information, where appropriate, when FGM or family history of FGM have been identified prior to, during or after the birth of a baby. This is another instance in which personal data will be shared.

The pregnancy-related FGM information to be specifically recorded includes: FGM type, confirmation that a de-infibulation procedure took place to facilitate the delivery of a birth, where applicable, and confirmation that no external female genitalia abnormalities were found in girl babies at birth following existing neonatal examinations, confirmation if an interpreter was required during the episode of care, and confirmation that the newborn baby’s healthcare record has been updated to reflect that FGM had been identified in the mother. Additionally, as part of the initial antenatal assessment, every woman MUST [their emphasis] be asked if they have undergone FGM. Where a Health Visitor identifies that there are sisters of a girl with FGM, it is the responsibility of the Health Visitor to inform the GP (pages 12-13). And this is not even the half of it.

The regulations say three times, (pages 8, 11 and 21), that clinical examinations of the woman’s genitalia need only be undertaken “as part of a usual, routine or requested provision of care – there is no intention for every clinician to automatically undertake a clinical examination in order to record the type of FGM”. Thus, there is a presumption that women not requiring examination of their genitalia will “self-report” when asked if they have had FGM. But will all clinicians note this caveat or will we begin to hear stories of women’s genitals being examined no matter what they have attended for?

From the point of view of the woman sitting in front of the doctor or midwife, one might easily imagine that any need for help she may feel would be compromised by the fear ‒ especially if she is pregnant, has girl children under age 18 or has just delivered a girl child ‒ of being investigated, prosecuted and criminalised by the criminal justice system, along with other family members. Will she give all the information asked of her? Will she come back for another appointment?

And what about the health professionals who have to ask women these questions and record their answers in the relevant database? There is an ethical requirement on health professionals not to allow the violation of patient privacy and not to break medical confidentiality, particularly if it is against the woman’s expressed wishes. Yet the HSCIC requirements require just that from health professionals, who must submit the data quarterly and in annual reports.

What if clinicians refuse to collect some or all of the data? The regulations do not say what will happen if they fail to return this information fully and in the required detail, except that “the submission will be rejected”. Will they be required to get the woman back in to obtain more details? Will they be disciplined, as they would if they do not report a suspicion or actual case of FGM in an under-18-year-old? Clinicians already worry about the consequences of not identifying ‒ or mis-managing ‒ women with FGM, and now they also fear prosecution, after what one of their colleagues suffered, in spite of being acquitted.

This is not the first time the Government has attempted to ‘share’ identifiable information from clinical records without patients’ permission. In 2013, they announced they were going to extract ‘identifiable data’ from GP records to be used ‘routinely’ for research by the health service and private entities (which might have included pharmaceutical companies), unless patients asked to opt out. In this instance, there was a public furore and after 700,000 people had opted out, the scheme was ‘indefinitely delayed’. This year, they attempted to do so again on the grounds that they needed to intervene in regard to the care of ‘high cost individuals’.

This time, however, women with FGM are not being given any choices in the matter. It is highly unlikely that they will refuse to provide their personal data in large numbers, as people with HIV did previously, as they do not have the social or political clout, or the public support, to challenge the Government or their health care providers.

Health professionals, on the other hand, do have that power, and just as GPs supported the 700,000 patients’ refusal to allow their data to be shared for unspecified research, so health professionals should stand up in this instance, and refuse to populate the HSCIC database with identifying details about the women involved.

At the end of February 2015, the government reported that 2,603 women and girls who had attended the NHS in the previous six months for health care of some kind had been recorded as having had FGM. Of these, only 44 were under the age of 18. Is it possible to extrapolate from these figures what the estimated prevalence might actually be? Probably it will take a much longer time to accomplish that, depending on how long it takes before the whole population of women and girls with FGM has attended for health care of some kind. Will prosecutions arise from the analysis of those data? Meanwhile, no proper epidemiological study has yet been considered, let alone launched.

Conclusion

I continue to believe, as I did at the FGM trial in January 2015, that this issue is being used politically by people in power, to gain credibility as champions of women only because they can present them as victims of their own culture. Furthermore, when, in reporting the government’s figures, the Guardian quotes Equality Now as saying “this is only the tip of the iceberg”, we can be pretty certain that it is the shock-horror value of FGM that is holding sway here, not concern for the women who have experienced it.

Although the situation is complicated by the criminal aspects of the issues involved, the government clearly needs a rethink ‒ epidemiological data, data for the provision of health care, and information leading to criminal investigation and prosecution should not be conflated in this way.

This blog was written for and appears also on Shifting Sands.

The morning after: the beginnings of an assessment of the FP Summit

16/07/2012 Comments Off on The morning after: the beginnings of an assessment of the FP Summit

Marge Berer
Editor, Reproductive Health Matters

13 July 2012

From a communications point of view, the FP Summit was a raving success. Newspapers, TV and radio all over the world covered it. Around the globe everyone reached by the media heard how wonderful family planning is and how neglected it has been, the Lancet launched a special edition , Guttmacher and others released facts and figures showing the extent of unmet need. Across the women’s health movement the listserves, Facebook and Twitter were full of it. All in all, the day – and many of the messages it gave birth to – had enthusiastic, even missionary, overtones.

On the absolutely fabulous side, Melinda Gates’ challenge to the Pope to acknowledge that contraception is ‘not controversial’ even amongst Catholic women, is likely to rock the foundations of the Vatican’s whole policy on abstinence, condoms and contraception from the grassroots of the Catholic church up. It was God’s gift to Catholics for Choice, who will be promoting Condoms-for-Life and safer sex at the upcoming AIDS conference later this month.

Also on the plus side, there were representatives of governments and many, many others who are making progressive change happen in their countries, and who spoke out about it. These are people who can make a big difference when they get home who did support comprehensive sexual and reproductive health and rights from the podium and the floor of the meeting, and who insisted that family planning services can only be provided within that wider remit. There were people who needed to learn what it was all about, some of whom were too young to have lived the history, but who came with strong pro-choice views.

The media exposure of the value of family planning has a huge potential for good, because it will have reached people who didn’t know family planning existed or whether it’s good for them and safe, and others who have never had a chance to talk about these matters with others. It will also have put fertility control as a public good on the map around the world. And hopefully it will spur those with expertise in sexuality and reproduction to start talking about what they know, and what is and is not true amongst all the hoopla – and to assert that the power of money must not be allowed to take precedence over public health values and human rights principles, or the values of knowledge and truth.

On the oh-God-help-us-no-no-no side, though, Melinda Gates anointed herself as the new saviour of women’s and children’s health, and the press ate it up in both pictures and words. Some of the best people in the field of sexual and reproductive health, were unexpectedly uncritical, singing the praises of this wonderful opportunity. Perhaps not surprising given the historical shortfall in funding for family planning.

A golden moment, the kind that big money and a Tory government are at home in, stage-managed by a slick public relations company called McKinsey (who describe themselves as “the trusted advisor and counsellor to many of the world’s most influential businesses and institutions”). With big pharma, having abandoned contraceptives for many years, talking about the opportunity (“70% of this market is under-served”) to make a profit from family planning needs and then give some of it back to women – as a charitable gift. Patting each other on the back for being so wonderful as to finally have recognised that women have health needs they can exploit. A truly Hollywood event, except this is not entertainment. This is women’s lives.

This golden moment, which had to happen mainly because so many governments have failed to take responsibility for the public health needs of their citizens, for maternal health, family planning, abortion, sexual health, in the only equitable manner that works – by providing publicly funded, well-resourced services.

It was a day that showed the world it was possible for one very well-meaning woman, backed by the power and money of her husband, to direct global policy and claim ownership of the provision of family planning to 120 million women and at the same time, to disparage and stigmatise women’s need for abortion to the entire world – and get away with it without being challenged. She had the courage to challenge the Pope. It is a shame that a summit attended by many of the world’s experts on these subjects could not emulate her bravery and challenge her in return.

She was not the only one who got away with it. The Summit also gave the podium to and applauded politicians from countries where millions of women have the very unmet need for contraception in whose name this Summit was called: women who are still dying from unsafe abortions because their governments are too cowardly to make abortion legal and safe; and women who are dying from complications of pregnancies because they have no access to life-saving maternity care. Countries that since the 1960s have received hundreds of millions if not billions of US dollars for family planning, which have as good as disappeared, or been squandered and misspent.

It included representatives of the very same private sectors whose services and prices for contraceptive methods and safe abortions remain inaccessible to and unaffordable for many in the world’s population who need them, especially young women and men. And not only in low- and middle-income countries, but also in the United States, a country whose health industry has made life hell for Barack Obama for trying to make health care even a little bit more affordable, excluding abortion of course, for millions of disenfranchised people. The United States – a country that has the biggest and most violent and aggressive anti-abortion movement on earth, second only to the Vatican, and some of the highest unintended pregnancy rates in the developed world, especially among poor women.

It was addressed by the Prime Minister of the UK, the Right Honourable David Cameron, who got a standing ovation for a speech about the importance of empowering women, a speech that stank of hypocrisy. A Prime Minister who is responsible for indefensible, swingeing spending cuts that are adversely affecting women, young people and children above all, including cuts in family planning, sexual health services and welfare, at a time when it has never before cost so much to raise a family. Whose Secretary of State for Health is selling off our National Health Service piece by piece, who has wasted public time and at least £1 million in public money harassing some of the real heroes of women’s rights, that is, abortion service providers, for no credible reason. Whose Minister for Public Health put an anti-abortion group on the government’s sexual health advisory group “for the sake of balance” and to propitiate anti-abortion fanatics in Parliament – a Minister who described abortion as a “sensitive” issue, after 45 years of safe, legal abortions (except for women in Northern Ireland, of course).

And now it’s the morning after. How to go on from here and engage in what will happen? It’s a pity about Melinda Gates’ prejudices against abortion. I hope she will reconsider them because it would make her a far more credible ambassador for this cause which, after all, does not belong to her.

An open letter to Shirley Williams

17/02/2012 Comments Off on An open letter to Shirley Williams

Dear Baroness Williams,

I have greatly appreciated your continuing efforts during the debate on the NHS Bill in the House of Lords until recently and that you took the time to send out the group emails that have kept those of us on the outside informed.

I am writing now, however, to say how disheartened I was to learn earlier this week that you have called for the Bill to be amended and passed, as if the entire Bill were not about competition, intended to open the door wide to privatisation and atomisation of the NHS, which is the Government’s strategy not only with the Health Service but with home and social care, with education and indeed almost everything else.

Your Party, as part of the Coalition, is certainly in an untenable position, as you are the ones who will make the passage of the Bill possible. I would not want to be in your shoes with the public when the true nature of the betrayal of the Health Service emerges if the Bill goes forward. Simon Hughes misguidedly believes that removing Andrew Lansley after you pass the Bill will save the situation, but it will not, though indeed Andrew Lansley should go precisely because he tried to sign away responsibility for his own position. But he must go along with the Bill, not after it or instead of it.

No one, from David Cameron on down, can ignore the increasingly articulated views of most health professionals as well as the public, which have grown in strength over the past few months as more and more people come to understand what is at stake. If democracy still means anything, then both Houses of Parliament must bow to the strength of public opinion and withdraw this Bill before it can do any further damage.

If all the Conservatives could find to say in defence of the Bill, e.g. on Question Time, is that the BMA didn’t support the NHS in 1948 either (a misreading of history), and that because it is already being implemented it is too late to turn back, then they (and you) have well and truly lost the argument.

Indeed, I would ask you whether the extent of implementation of the Bill – even before it has been debated fully, let alone voted upon – is unconstitutional. If it isn’t, then it should be.

I urge you from your position of leadership to convince both parties in the Coalition that this Bill is unsalvageable and should be withdrawn – as the only honourable thing left to do.

 

With kind regards,

Marge Berer

Editor, Reproductive Health Matters

Privatising the NHS can bring down a government

02/06/2011 Comments Off on Privatising the NHS can bring down a government

LETTER TO MPs, SENT 28th MAY 2011 – INTERNATIONAL DAY OF ACTION FOR WOMEN’S HEALTH

I am writing to urge you to call on the Prime Minister and the Secretary of State for Health to withdraw the NHS Bill, as recommended by the British Medical Association and many others with expertise in health care and health systems. This Bill is the wrong response at the wrong time. It is far too complicated, with potentially costly and negative consequences, to be amended piecemeal.

Everyone recognises that the cost of health care is a major issue, particularly with an ageing population. However, this Bill does not address the costs of an ageing population. Indeed, it says nothing about it.

Instead, it removes the responsibility for health care from the Government altogether. It does this by handing over the responsibility to a body independent of Government, called Monitor. It shuts down the only remaining Government bodies responsible at regional and local level (Strategic Health Authorities and Primary Care Trusts) for managing health care spending and ensuring national standards are met. It places their role in the hands of GPs, who will be forced to create the equivalent of these same bodies, but not in the public sector. And it requires all hospitals to become independent trusts, thereby forcing them to take independent responsibility for balancing their books and leaving them on their own to sink or swim.

Lansley’s Bill also takes away most of the powers of NICE, a body whose contribution to standard-setting and control of costs, such as drug costs (crucial with an ageing population), based on public health expertise and scientific and clinical evidence, has been absolutely essential. This will be a fatal blow to control of spending on drugs and quality of care.

All of this is privatisation of the NHS. The upshot will be fragmentation from within – the postcode lottery instituted as the basis of policy, dressed in deceptive language about “choice” and “local control”.

You will say perhaps that the last Labour government started this process, as if that were justification enough to go so much further. It is not. The Thatcher and Major governments “started it” and Labour certainly took it further, no one disputes this. Under their jurisdiction, since 1990, an internal market was created in the NHS, which led to massive growth in managerial spending.  Whole sections of the NHS were moved out of the public sector – GPs became independent; so too did dentistry, optometry, ambulance services in many places, and much more. Private medicine also grew, e.g. for cosmetic surgery. And private companies came in, offering Strategic Health Authorities and Primary Care Trusts their services (for a profit) in a myriad ways, such as handling hospital appointments and sending reminders to come for screening. Moreover, through private finance initiatives, many hospitals were committed to taking out and paying back expensive private loans to support badly needed modernisation, as the whole system was falling behind, precisely because it had been starved of funds prior to 1997.

What Labour did right was to inject the funds and push modernisation. It set standards of care and targets to ensure those standards were reached. And the reason why the Labour government was able to make so many needed improvements was because the system as a whole was still under the control of the very public bodies that the Lansley Bill will close down – the Ministry and Department of Health, Strategic Health Authorities and Primary Care Trusts.

So, yes, previous Governments started it. Some of what they did turned out to have been a very good thing, but not all of it. Not all by far. The internal market is the main reason why bureaucracy has grown so much, and it and private finance initiatives have increased costs greatly. The question is, does the Lansley Bill address the real problems? Unfortunately, it does not. It is likely to exacerbate them.

Privatisation takes many forms. Lansley’s Bill does it first and foremost by moving all the remaining parts of the NHS in the public sector out of the public sector. At the same time, it opens the door even wider to private health companies and service providers. How? Under European trade regulations, the bulk of the NHS will be independent of government, so it will be required to allow competitive tendering – from which only the public sector is exempt. Thus, the replacements for Primary Care Trusts (set up by GPs), GPs themselves and all foundation trust hospitals will have to open themselves to competition – privatising the NHS in all but name.

It is a false assurance by the Secretary of State that competition will not be permitted. If he does not know this, his competence must be questioned, and if he does know it, then he is trying to pull the wool over our eyes.

The Conservative Party supports privatisation of public services. It would therefore be disingenuous of Conservative MPs to pretend that, unlike all the other reforms they are pushing through at breakneck speed, the Lansley Bill does not aim to privatise the NHS, and radically.

Labour and the Liberal Democrats have tried to have it both ways for too long It would be disingenuous to think that mere amendments could remove the profound effects this Bill will have. The time has come for both parties to take a stand against privatisation of public services. Together, you have the power to force the withdrawal of Lansley’s Bill. The fact is –  as has been shown in country after country – that the public will soon be paying user fees for health care in one form or another as a result of these reforms, as we already do for dentistry. The poor, the disabled and the elderly will be especially hard hit.

Every medical professional body and health trade union has expressed opposition to and/or grave concerns about this Bill. The public do not fully understand how this Bill privatises the NHS, but they have taken on board the message that it does. Week after week on Question Time they have shown it. Some 420,000 voters have signed the 38 Degrees petition against the Bill as I write. That’s a lot of votes.

“Protecting the NHS” is a vote winner, yes. But privatising it can also bring down a Government.

17 reasons to oppose Lansley’s NHS bill – and what to support

22/03/2011 Comments Off on 17 reasons to oppose Lansley’s NHS bill – and what to support

Everyone I’ve spoken to wants to oppose privatisation of the health service in England, but many said they wouldn’t know what to say about the NHS bill, currently going through Parliament, because they haven’t read it. I wrote this list of reasons why people should oppose the bill, which has been shared with my local GP Practice Patients Group, Labour Party branch, the discussion website of the housing estate where I live, several MPs and friends working in health advocacy groups in London.

17 reasons to oppose Lansley’s NHS bill – and what to support

1. The bill would privatise the National Health Service in England by removing all major bodies in the NHS from government control, either closing them or making them independent (= private). It would:

  • Remove responsibility for the NHS from the Secretary of State for Health to a new NHS Commissioning Board
  • Abolish Strategic Health Authorities. These are currently responsible for plans to improve health services in their local area, making sure they are of high quality and performing well,  increasing capacity and ensuring national priorities are integrated locally – with no intention of replacing them
  • Abolish the 151 Primary Care Trusts (PCTs). PCTs manage all aspects of primary care provided by GPs, dentists, opticians, NHS walk-in centres and NHS Direct. They purchase services from hospitals and other specialist services, such as mental health services and manage screening, patient transport and NHS pharmacies
  • Create 500-600 GP consortia in place of PCTs, who would probably hire independent bodies to manage and spend 80% of the NHS budget, some £100 billion
  • Force all NHS hospitals to become Foundation Trusts, removed from the NHS balance sheet and responsible for ensuring in their own income and sustainability
  • Privatise almost 1 million NHS staff by 2014.

2. Under European trade laws governing services (GATS), making all major NHS bodies independent from government will open the provision of health services to competition. All private providers, including large corporate heath bodies from the USA and Europe, would be able to compete for contracts. Lansley’s denial of this fact does not make it less true and expert lawyers for 38 Degrees have confirmed this is the case.

3. The NHS Commissioning Board will have a huge amount of power, and ‘local control’ may be pure spin.

4. Prior to amendment, the bill had 353 pages with 281 clauses, 234 pages of explanatory notes and an impact assessment of 165 pages. Very few people have read it all, let alone understood its consequences and costs.

5. Because of its size and complexity, most of the bill did not get proper scrutiny before or during its third reading in the Commons. Opposition in the Lords is crucial. The Tories are pushing it through far too quickly.

6. The Government has been justly criticised for constantly distorting the NHS’s record to justify restructuring it, and using “cynical and misleading” information to downplay its achievements in recent years. They have also failed to publish evidence that levels of public satisfaction with the NHS are at their highest in years, following from Labour’s inputs and increased funding.

7. The Foundation Trust Network has warned that due to the £20 billion of “efficiency savings” (= cuts) the Government has demanded, hospitals are under “financial stress that will lead to the loss of many thousands of jobs and will seriously endanger waiting times and services for vulnerable patients, as well as threatening organisational survival”. This warning, early in 2011, has proven to be true in many local areas already.

8. It is unclear:

  • Whether GPs can choose which GP consortium they join
  • What responsibilities GP consortia will have
  • Who will monitor their commissioning decisions and their spending
  • Who they will report to without Strategic Health Authorities
  • What will happen if they overspend their budgets.

9. 71% of 800 GPs surveyed by the Nuffield Trust expect that GP commissioning will force GP consortia to focus on controlling costs.

10. Squeezed by spending cuts, GP consortia may be forced to:

  • Restrict access to hospital and specialist care (indeed recent evidence shows that many GPs have begun doing this already)
  • Make decisions about whether to keep or exclude specific treatments from the NHS
  • Give patients the “choice” between paying privately for care or going without.

11. In Hounslow, as a sign of what’s to come, UnitedHealth, a profit-making corporate health company, has been brought in to cut a local GP consortium’s spending by reducing GP referrals of patients for hospital care.

12. Patients may have to lobby GPs for services and drugs, and GPs have to negotiate services for their patients that they used to be able to count on. There is evidence that this is happening already.

13. Foundation trusts may be forced to close services that don’t bring in enough income. To get more income, they will be able to take many, many more private patients than has been permissible in the past. NHS patients are likely to lose access to hospital and specialist services as a result. Waiting lists could lengthen (they already have) and private patients may begin to get preferential treatment.

14. Private providers will compete with and seek to undercut NHS providers, cherrypick which services they offer and patients they treat, no matter the protestations of Andrew Lansley or any amendments to the contrary, and will see patients needing chronic care initially, for the income, and then dump them back on the NHS, increasing costs. This too is already happening and it could end up bankrupting many GPs and hospitals.

15. Patients may be allowed to register with any GP practice. While the majority may stay with their current GP, many may decide to move away from suburban and rural practices to GPs near their workplaces. The consequences for home visiting, patient funding and GP practice size would be great. Choice of registration may be determined by economic status, existing health problems, or age. Vulnerable patients will be most affected.

16. The postcode lottery – masquerading as local choice – will not only become the rule but serves as the ethos of this new system. The evidence is that patients want quality of care in a public health service, not spurious choice.

17. The Labour Party and the Green Party are opposed to Lansley’s bill. The LibDem conference expressed major concerns about it. Some Tory MPs are also very worried, including on the Health Select Committee.

The following health professional/advocacy bodies are opposed to or have major concerns about the bill: British Medical Association; NHS Consultants Association; Royal College of GPs; Royal College of Nurses; NHS Support Federation; Foundation Trust Network; Keep Our NHS Public; Health Emergency; National Association of Links Members; NHS DirectAction; 38 Degrees; Save Our NHS (medical students).
What to support

1. All publicly funded health services should be provided by health professionals and health service bodies in the public sector. Moves to privatise GPs, hospitals, ambulance and other emergency services, dentists, administrative and financial management, and social care should be reversed. The example of privatisation of dentistry, which has meant a large proportion of the population no longer receive regular dental care, should be a warning and an example of what is coming and why it should be avoided.

2. The NHS should be based on co-operation, not competition, promoting access, quality and fairness.

3. Improvements can be made without top down re-organisation.

4. Competition within the NHS and with NHS services should not be permitted.

5. Strategic Health Authorities and PCTs should not be abolished but improved.

6. The Secretary of State and the government should remain responsible for the NHS. Hospitals and all other services should remain in the public domain.

7. The internal market, whereby Primary Care Trusts (and under Lansley’s bill GP consortia) commission services, and hospitals and others sell them those services, should be abolished. This system, instituted in 1992, is the main source of increased bureaucracy in the NHS, and a costly and inefficient way of arranging service delivery.

8. The cap on the number of private patients treated in NHS facilities should remain low and tightly controlled, and be based on an assurance that the NHS can afford to treat all patients in need of care in the public sector.

9. The siphoning off of funds from the NHS by private services who accept patients they cannot treat and then send them back to the NHS to obtain treatment should be subject to investigation and regulations developed to prevent it happening.

10. All members of both Houses of Parliament and staff of the Department of Health should be investigated to learn who has personal interests in and connections with private medicine. Those found to have such interests should be required to recuse themselves when anything related to the future of the NHS is debated in Parliament or at issue in the Department of Health.

Lansley’s bill should be withdrawn in its entirety.

What you can do

1. Write to your MP and express your concerns.

2. Join a patients advocacy group and work to save the NHS.

3. Propose resolutions in support of the NHS and against Lansley’s bill in your professional association, trade union, community group, political party branch, women’s group or students group, and send them to national bodies and members of Parliament.

4. Sign a petition:

Save Our NHS

Stand Up for the NHS

Privatisation: changing the ethos of health care delivery

15/03/2011 Comments Off on Privatisation: changing the ethos of health care delivery

RHM is about promoting sexual and reproductive health and rights globally, but sometimes it’s important to focus on what’s happening at home.

First, though, I need to acknowledge the heartbreaking devastation in Japan and say that this shouldn’t be seen as an isolated natural disaster. It (and the floods in Australia and the tsunami in Thailand before that, among others) is just the beginning of the global environmental disaster we are continually being warned about. If we don’t take heed soon, our children and grandchildren will inherit a far more frightening world to live in than we can imagine now.

And now, to the news in the UK, where a movement is growing both among health professionals and at the grassroots to stop passage of a Government bill that would dismantle and privatise our National Health Service in England. Today, at 11:45am, a special session of the British Medical Association voted “overwhelmingly” to call on the Government to withdraw the bill in its entirety. This is a major victory in an ongoing struggle to stop the privatisation of health care in the UK, which has been going on since 1992 under the last Conservative government, and which this bill would have finalised under the coalition Government in office since last May.

Privatisation means many things. First, it means changing the ethos of health care delivery from being for patients into being for consumers. Some years back, we thought it would be good to stop using the word “patient” for people such as those seeking contraception, who weren’t ill. However, the term everyone has substituted, “client”, is applied across the board and ignores the fact that most health service users are ill and may have a life-threatening condition, such as obstetric complications or breast cancer, or chronic problems, such as fistula or infertility.

A paper RHM will be publishing in May looks at why maternal morbidity is higher among immigrant women in the Netherlands than among native Dutch women. In it, the authors talk about a consumer-centred care model that is being promoted by the Dutch government, which sounds similar to what the UK government is promoting as well with their bill. They claim on both sides of the North Sea that the aim is to improve the quality of care by giving people more “choices” over the care they receive. But as this paper observes, women with a life-threatening condition such as pre-eclampsia need competent diagnosis and decisive action by health professionals – not a “choice” of where to get that help or patient-centred participation in the decision of what kind of help it is, in the consumer sense.

This distortion of the concept of “choice”, at least over here, is about turning health care provision more and more into a marketplace, where publicly funded GPs, primary care and specialist services such as mental health services, and hospitals as well, must all become independent bodies and compete with each other as regards which services they provide, what they charge for them, and also for referral of patients to them. That’s privatised medicine, I don’t care how you dress it up.

Under European Union-wide policy, if a service is not almost wholly provided by the state, as the health service in the UK here currently still is, then the rules of competition that apply to free trade would also apply to health care provision. This could potentially bankrupt publicly-funded hospitals and services. Anyone – whether a public or private health care provider – would be allowed to compete for patients and undercut each other in their efforts to do so. This is called allowing in “any willing provider” in the language of the current Government bill. Its effect would be to destroy the ethos of cooperation in the health system.

It is incredibly heartening to see so many health professionals in this country rejecting privatisation, since many of them could benefit enormously at a personal level by “going private”. The UK was recently found in a survey to be one of the most equitable health systems in the developed world. The USA, in contrast, was among the worst.

Why should we be trying to emulate and copy a model that is among the worst of its kind? Because large, private profit-making health corporations in both the USA and Europe-wide are fiercely lobbying our politicians to “let them in” and word has it that they have close contacts inside our Department of Health and give a lot of money to the campaigns of politicians in more than one of our main political parties who will support their invasion of our much-loved, publicly-funded, publicly provided NHS.

Does it need improving? Oh yes! Constantly. Is privatisation the way forward? Definitely, resoundingly not.

And now, I need to get back to editing the next journal, which has more articles on privatisation and commercialisation of sexual and reproductive health services.

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