Charging for Healthcare – Closing the Doors on the NHS

I initially wrote this post for Pulse Magazine, with an audience of GPs in mind, so please forgive the fact that it sometimes slips into jargon. The debate on healthcare for migrants is not something just for GPs to consider, however, as it affects us all. How we care for those who arrive in this country from abroad says a great deal about our nation, and we should all have a voice in the discussion. Here is the post:

I don’t know about you, but I’m swatting up on public health and maternity care – it might seem an odd combination, but it looks like we’re going to need it. The Department of Health – renowned for its undying faith in the virtues of general practice – has decreed that only primary care will remain free at the point of delivery for non-EU migrants, while A&E and secondary care will be withdrawn behind a solid pay wall. This is seen by some as a U-turn, bowing to concerns that charging for all medical care could lead to serious threats to public health, such as outbreaks of TB – as has already happened in Spain.

The Department of Health has reassured the public by stating that, in keeping GP consultations free, everyone will have ‘initial access to prevent risks to public health such as HIV, TB and sexually transmitted infection.’ That’s all right then. There’s no statement, of course, about what is meant to happen after this initial access. When I’ve made my initial assessment that the impoverished patient sitting before me could well have TB, can I order a chest x-ray before I obtain their credit card details? And when the report of a cavitating apical lesion arrives on the fax machine, should I brush up on treatment regimes for mycobacterial disease when my patient informs me that he can’t afford hospital care? Perhaps I should learn bronchoscopy and start offering it as a minor op? Oh, but they plan to charge for that too, don’t they? Oh well, it’s not like TB is making a bit of a come-back or anything.

Then there’s maternity. Apparently no-one will be turned away, but they will be charged. How does that work then for a pregnant woman with no money? Cross your legs until you’ve saved enough? Visit Wonga and ask for a labour day loan? Or try a home birth with a cost-free GP and hope you find one that’s been around long enough to remember how to do it? Even if the moral argument doesn’t grab you, it makes poor economic sense – obstetric catastrophes are very expensive as well as tragic.

The thinking behind this, of course, is that the NHS is broken (it isn’t), and so-called ‘health tourists’ are the cause (they aren’t). The real reason, however, is more ideological. Read the DH document in detail and you find a recurring argument that goes something like this:

We’ve considered Situation X; we recognise there are moral and ethical difficulties, but we are going to charge anyway because the Hard-Working-British-Tax-Payer can’t put up with the idea that someone, somewhere might be getting a free ride.

The document makes a clear distinction between medical tourists (those who choose to travel for better health care, but are willing and able to pay for it) and health tourists (those who have health needs but cannot afford to pay for it). They want to encourage the former (the rich), while denying healthcare to the latter (the poor) – how very like this Government.

Now I’m not that keen on people being able to take cynical advantage of the NHS, but neither do I wish to see the most vulnerable in our society shut out of receiving healthcare; the new rules will apply to asylum-seekers – many of whom have genuinely fled from horror to the safety of our more tolerant society – and even people who have become victims of human trafficking may have to pay; the Government is still consulting about this, and is clearly stuck with how to identify the ‘worthy’ immigrant from the ‘unworthy’ one.

It will not be long before doctors will have to decide which is the higher calling on their professional duty. When faced with a sick patient – not quite an emergency, but not something to ignore – will it be Government policy that will prevail? Or the urgings of a hospital manager desperate to balance the books? Or should we insist that, whatever the political will we are up against, our duties are laid out by the foundations of our profession as laid down in the World Medical Profession declaration of Geneva:

I WILL NOT PERMIT considerations of age, disease or disability, creed, ethnic origin, gender, nationality, political affiliation, race, sexual orientation, social standing or any other factor to intervene between my duty and my patient.

Or our own GMC:

MAKE THE CARE OF YOUR PATIENT YOUR FIRST CONCERN; Protect and promote the health of patients and the public; Respect patients’ right to confidentiality; Never discriminate unfairly against patients or colleagues.

Or the United Nations Human Rights Treaty:

States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, including prisoners or detainees, minorities, asylum seekers and illegal immigrants, to preventive, curative and palliative health services; abstaining from enforcing discriminatory practices as a State policy.

When these charges start to bite doctors will be faced with dilemmas on a daily basis. Do we do as we are told, and turn away patients whom we know we can help on the basis of their nationality, or do we consider something more radical? When Iona Heath reflected on the above statements recently on Twitter she had no doubt which was the right way for the profession to act, and recommended civil disobedience. Are we brave enough to follow her lead?

The Burden of the Elderly

Baroness Warnock must have known that she was brewing up a storm when she suggested that people with dementia may have a moral ‘duty to die’ because of the burden they place on their families and the state. One wonders why she did it – not for the publicity, surely? The most compelling argument against legalised euthanasia is the concern that vulnerable elderly people will feel obliged to consider ending their own lives out of worry about being a nuisance – whatever Baroness Warnock’s motivations, it is quite chilling to see it argued in print that they would have an ethical obligation to do so.

If the criterion for ending your life is that your continued existence carries too great a price for family and state to pay for, then it is a small step to apply these principles to the young as well as the elderly. After all, the main difference between a young, severely disabled person and an elderly severely disabled person is that the younger person will require care for far longer. The argument then starts to resemble the ideology of eugenics – Europe has been there once in the last hundred years, and once is quite enough.

There is no doubt that people with advanced dementia are a burden on their families and the state – they require a lot of care and support, we would be blind to the reality of the situation to argue otherwise. The key question, though, is this: should humanity be about avoiding carrying burdens in the pursuit of individual happiness, or is our humanity both defined and enriched by the fact that we choose to carry one another’s burdens?

You only have to talk to some of those who care for a loved one with dementia to know two things: caring for someone with dementia can be tough, and many thousands of carers would tell you that it is a burden that they gladly and willingly carry for as long as it takes. We should not romanticise the role of a carer, though. For many it is too much to juggle the needs of an elderly parent with dementia with the requirement to earn a living, care for the children and still find time to eat and sleep. People need help to do this. They need a society that is willing to step up to the plate, pay its taxes and prioritise the care of the weak and vulnerable as a key measure of civilisation. We need a government that doesn’t just berate families for allowing their elderly to become isolated, but creates an environment where those of working age are more able to achieve sufficient slack in their lives to be able to care.

Ultimately it depends on whether we see the weak and the vulnerable as an annoying drain on national resources, or the very stuff that society is there for; the grit in the oyster that creates a pearl as humanity finds its purest form of expression in the care of the vulnerable; the antidote to our sanitised, celebrity-driven culture that seeks to avoid suffering at all cost, and a reminder that how we care for one another is how our society should be judged.

Organs by Passport

Some cases stick with you over the years. I remember a young woman who was left fighting for her life as a result of viral myocarditis. That someone previously fit and in the prime of her life could be struck down with such speed was a shock to this (then) fresh-faced young doctor; how her family coped with the awful truth that a heart transplant was the only way to save her, I will never know.

Imagine the same case happening in 2014. Intensive care, a young life, tubes, lines, drugs – 21st century medicine doing its best and running out of options. The difference is that the young woman in question is here on holiday, lives outside the EU, and Jeremy Hunt’s proposal to clamp down on ‘health tourism’ has found its way onto the statute books. The rules have changed for organ transplants – those without a right to remain in the country are excluded. A heart transplant is her only hope – but she is deemed unworthy, a health tourist who came to these shores to exploit our free health service. She should have known that she would develop viral myocarditis while on holiday and stayed in her own country where she had a right to care.

By a strange coincidence the young man who lies in the bed next to her is also here on holiday, and from the same country. Like his fellow country-woman, he had no idea of the tragedy that awaited him – he never saw the car coming, the resident-with-the-right-to-remain who was driving too fast. His family is in a side room, having that conversation – being told the news that his brain is dead and beyond any hope of repair, only his healthy, vibrant organs remain; would they like to consider organ donation?

 

This article was originally published in Pulse GP magazine (free registration required).

Intrinsa? Intrinsically Wrong

Few of us will have noticed the change in status of the testosterone patch Intrinsa last October. As a GP I have no patients who have been affected by it, and while a treatment for the controversial diagnosis of Female Sexual Dysfunction might be significant for a small number of women, it is hardly a life-threatening condition or a major public health priority. However, we would do well to take note, because it heralds a new low in the behaviour of the pharmaceutical industry as they try to maximise profit, and has implications not only for the resources of the NHS, but also patient safety.

Intrinsa is a testosterone patch, and was one of the few such products licensed for use in women. In October 2012 Warner Chilcott, the company that held the rights to market Intrinsa, took the unusual step of voluntarily withdrawing its product licence ‘for commercial reasons’. Given the high costs involved in obtaining a product licence in the first place, it is hard to see how this could bring commercial benefit – until you follow the story a bit further.

Ben Bryant of The Daily Telegraph has been drawing attention to the activities of the pharmaceutical industry in a series of articles in the last two months, and has highlighted the situation with Intrinsa in his latest article. What Warner Chilcott have done is to maximise profit by exploiting the financial regulations surrounding licensed and unlicensed medicines – with the former having to abide by an agreed price cap while the latter exists in the mysterious world of the unregulated ‘specials’ market, where the drug company can charge whatever they want – frequently at outrageously high prices.

Within a month of the change, the ‘last batch’ of Intrinsa (sufficient for ‘the foreseeable future’) was acquired by another company HFA Healthcare, who were quick to point out their altruistic motive to ‘ensure continuity of medication for patients,’ but rather more reticent about mentioning the price hike – from £26 per pack to £395 per pack.

We have been here before with far more significant drugs – Epanutin was acquired by Flynn Pharma last year, with a 23-fold rise in the price and a great deal of worry for patients. What is new about is scenario, however, is the loss of the licence. A Licence is not just a mechanism to allow the pharmaceutical company to promote its product; it is a source of protection for both the doctor and patient. It provides security that a medicine has been properly tested, has safety data approved by an independent body (in this case the European Medicines Agency), and has been deemed to be effective in treating the condition in question. It is the medical equivalent of a Kite Mark.

The absence of a licence means prescribing a drug off-label. Doctors are used to doing this where treatment is required and no licensed product exists – the patient cannot always wait for the time-consuming processes involved – but this is because a licence has never existed, not because it has been withdrawn for purely commercial reasons. When a doctor does prescribe off-label in this way a doctor has to take extra responsibilities, or, to quote the MHRA:

The responsibility that falls on healthcare professionals when prescribing an unlicensed medicine or a medicine off-label may be greater than when prescribing a licensed medicine within the terms of its licence.

Put crudely, if something goes wrong you can’t sue the drug company as the medicine was used in a way that they did not recommend. The patient is more likely to sue the doctor, or not be able to get compensation at all if there is a problem; the drug company is able to wash its hands, and say ‘nothing to do with us.’ It is the equivalent of selling an electrical appliance, but withholding its 1 year warranty ‘on commercial grounds’, only the patient isn’t able to shop elsewhere, since there is no other licensed product to turn to.

Withdrawing a licence is not just a matter of finances, a way of a company balancing its books or a headache for the NHS drug budget – it is a patient safety issue first and foremost and this practice needs to be investigated and stopped in its tracks before the industry tries it out again – this time with a drug that really matters.

Leave Them for the Poor and the Stranger

The Old Testament book of Leviticus may seem an unusual source for guidance to inform social policy, but there is wisdom in this ancient Hebrew book of the law that we would do well to consider, whatever our religious views. Hidden in the middle of the 19th chapter are the following two verses:

When you reap the harvest of your land, do not reap to the very edges of your field or gather the gleanings of your harvest. Do not go over your vineyard a second time or pick up the grapes that have fallen. Leave them for the poor and the stranger.

This was a clear instruction to the Jewish people that they were to live with a social conscience: that those with plenty should leave behind something for those in need, which includes both the poor and the foreigner.

In stark contrast, the political arguments from our Government are increasingly about taking the harvest right up to the edge of the field. There is an ideological fear that someone, somewhere might be getting a free ride, which leads to picking over the vineyard again and again to make sure that nothing is left for ‘free-loaders’, while the dual spectres of the benefits scrounger and the health tourist are used to stoke the political debate.

There are many formal policies already in place, such as the huge cuts to legal aid or the cap on welfare payments. Most obvious to GPs are the changes to Employment Support Allowance, with patients frequently left bewildered and desperate after an assessment by ATOS and the sudden cessation of their benefits.

Now we hear that there are to be changes to Job Seekers’ Allowance. Claimants will have to sign on weekly rather than fortnightly, and will have to wait seven days rather than three before their first claim – four days without income when you are already gleaning what you can from the edges of society. The poor are being squeezed.

As for the stranger, families are being split by increasingly harsh immigration laws, the spectre of a two-tier NHS was first floated by the Immigration Minister Mark Harper, who seeks to deny healthcare to newcomers from Romania and Bulgaria, and now the Health Secretary intends to make it a reality with his proposals to dramatically reduce access to healthcare for migrants.

Austerity, of course, is the justification in every case – epitomised by the plight of the idealised ‘hard-working family’ – but there are times when society has to decide what is right, and what is wrong. For many of these policies the financial gain to the Treasury is small, but the political will makes them appear a necessity. Do we want to live in a society that squeezes the margins so tightly that we ensure no-one ever takes us for a ride? Or might we just be willing to risk being taken for granted, leaving something at the edges for those who are in genuine need?

A society should be judged by how it cares for those who are most vulnerable. At first it might seem more expensive, but there are wider costs to bear when society gets tough on the poor. Poverty is closely linked with poor health, and increasing poverty with worsening health, while the health problems of the most vulnerable will have impact on us all.

When I look at these verses in the book of Leviticus, I can’t help feeling that the thinking behind them is as pragmatic as it is moral – if you marginalise the poor and the foreigner there will be a greater price to pay in the end.

This post was originally published in Pulse magazine (free registration required)

End of Life Care Pathway – Giving the Time to Choose What Matters

The Daily Mail reporter Steve Doughty has written no fewer than 8 articles since the beginning of October attacking End of Life Care planning and the Liverpool Care Pathway. Two of the more inflammatory examples can be found here and here, and the latest post has been published today.

Karen Jones has written this Guest Post as a response to those articles. Karen is one of the GPs at Binscombe and is the lead in the practice for Palliative Care. She also works for The Beacon Centre as a GP with a Special Interest in Palliative Care, and was the lead GP when we started working with Christopher’s Children’s Hospice, part of Shooting Star Chase.

Here is her post:

We are always told that there are only two certainties in life: Dying and paying tax. Nowadays, the latter seems to be a matter of contention, but we are certainly all going to die. It was with great sadness that I read the recent articles on the End of Life Care Pathway – as doctors, once again, were slated for trying to do the right thing. This is not a new initiative. The Gold Standards Framework has been used by GPs as a framework to identify and improve the care of patients for several years now. It has been, I would say, revolutionary in the way we approach and manage the care of our dying patients in terms of planning and co-ordination.

I have often thought ‘what constitutes a good death?’ For me personally I would like time to say goodbye to my loved ones; I would want to have my affairs in order and feel that I had prepared my husband and children for life without me. I would prefer to be at home at the end but know that sometimes this is not achievable, and I would definitely want my symptoms to be as well controlled as possible, by a knowledgeable and caring team who had time for me and my carers. A tall ask I know, but I think this is what we should all want for ourselves and our relatives, and it is what, as a health team, we try to deliver. We can’t always achieve this but we should aim for high standards.

So how is this achievable? Well, really by preparation – and this is the point of End of Life Care registers. It is only by trying to identify patients who seem to be approaching the last year of their lives that doctors and other members of the team can start to explore peoples’ wishes. We, of course, cannot predict precisely when people are going to die, but only a few of the deaths in our practice are completely unexpected. We know that a quarter of the deaths each year are from cancer. The rest are usually in frail elderly patients or people with long term conditions who have been slowly getting worse. These people, I think, get a raw deal because of the variable nature and progress of their conditions. We are often anxious about initiating discussions about end of life care in case we upset them. The End of Life care register is a way to highlight these patients and encourage us to do this. And yes we do need to be sensitive and have excellent communication skills and it can be very daunting for us, but we all need to start trying to talk about death so that we can express our wishes. We are not talking about withdrawing ‘life saving’ treatment – indeed people sometimes choose to have all treatment possible right to the end – but others get tired of numerous hospital admissions and are ready to say ‘that’s enough’ and we need to be able to support them and plan for this. The alternatives to planning and making our wishes known are the risk of uncoordinated care out of hours; emergency admissions which are distressing for patients; relatives and staff who don’t know patients’ real wishes; and more deaths in hospital, which is fine if this is where patients want to be at the end of their lives, but not if they don’t.

Palliative care is about helping people live well until they die, but we all need to be honest with each other so that people can prepare for this. As a doctor I feel really privileged to have been able to help people achieve a peaceful death in their preferred place of care, and I believe that any initiatives that help us plan and prepare for this, including End of Life Care registers should be encouraged.

Dying

 

 

 

 

 

 

 

 

 

 

 

 

Lutz-R. Frank via Compfight

It would be great to hear what other people think about this important issue. If you have any views on Karen’s post, or the articles in The Daily Mail please consider leaving a comment. Thank you.

 

Guest Post: Raising Awareness of Organ Donation; Real People, Real Lives

Guest Blog: This post has been written by Dr Karen Jones, another of the GPs at Binscombe Medical Centre.

I am writing this from a very personal standpoint. Today my niece and her dad – my brother – are in London to appear on Daybreak to talk about organ donation. Holly is 19 and suffers from cystic fibrosis. You can see her very measured appeal for organ donation on You Tube and Daybreak on ITV player. Cystic fibrosis is a genetic condition that affects mucous production and causes thickening of secretions. This is especially a problem in the lungs, causing recurrent chest infections, and the pancreas, leading to malabsorption because the pancreatic enzymes which help to digest food can’t be released into the gut. Holly needs new lungs. Her appeal is for us all to think about donation, because until we start talking about this on an individual and societal level, people like Holly will continue to die waiting for organs. In 2006 The Organ Donation Taskforce was established to look at issues around organ donation. They looked at all aspects of organ donation, and in 2008 made 14 recommendations which, if implemented, they felt would increase the rate of organ donation by 50% in 5 years. So far it has increased by just over 30%, we will see at the end of 2013 whether their target has been achieved. Apart from all the organisational aspects of organ donation and retrieval, they also looked at changing the way individuals could donate organs, and it is this very personal aspect that I want to concentrate on.

Various options are available to us as a society, and some members of our family feel that a ‘hard’ opt out system is the way forward. Wales are currently looking at adopting this system. This would mean that doctors could remove the organs of any adult who had died and who had not registered to opt out of donation as an individual or as part of a group who collectively choose to opt out. This would be regardless of what the relatives felt. A slightly different approach is a ‘soft’ opt out system where the above applies, but also the relatives views are taken into account if they offer them OR the relatives views are actively sought for those who die and have not opted out. In the United Kingdom we have a ‘soft’ opt in system whereby doctors can remove organs from a dead person if they have registered to allow this, but doctors may choose not to do this if they receive opposition from the relatives. A ‘hard’ opt in system would not allow the relatives to oppose organ removal.

So how do we feel about this? My own opinion is that we need to increase awareness of the issues. However painful it is to have these conversations about dying and our wishes at that time, it is even more painful when faced with a loved one on a life support machine in hospital, trying to fathom out whether they would want to donate their organs at such a harrowing time. I think the medical profession needs to deal with these situations with sensitivity and uphold the wishes of the deceased, but also listen to the relatives. Usually if people have strongly expressed their desire to be organ donors, then relatives should respect this no matter how difficult this may be for them. Should we have an ‘opt out’ system? Spain has a ‘soft’ opt out system and have increased the numbers of organs donated, but they have also improved other areas in the whole pathway of organ donation and it is probably this that has improved the donation rates – for example they have a designated organ donation nurse in every hospital. My concern is that with an opt out system we are presuming consent for donation. It may be that people do not understand, don’t get round to opting out, have learning difficulties or are chaotic in the way they live – can we presume that they have made a decision to leave their organs when they die? Consent to me is an active decision, and I think that people who have chosen to donate their organs have made a positive choice to help others with the amazing gift of themselves. Maybe we will be debating this again soon as a society, I think as individuals we need to have made up our minds and, more importantly, told our nearest and dearest – so that if the time comes when they are facing such a decision, they can honour our wishes and something can be gained from their loss.