Prescription cut could cost constituent's life

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22 February 2013

Parliament

In the House of Commons, Siobhain complained to Health Ministers that her constituent's life-saving prescription had been suddenly stopped by the local NHS. Here is how it was reported in Hansard:

1 Mar 2013 : Column 642

Merton and Sutton PCT (Prescribing Policy)


Motion made, and Question proposed, That this House do now adjourn.—(Joseph Johnson.)

2.33 pm


Siobhain McDonagh (Mitcham and Morden) (Lab):

Like many Members, I have a lot of concerns about what is going on in the NHS at present. My local NHS has to save £370 million a year and two out of five of our general hospitals are about to lose both their accident and emergency and maternity units. I am sure I will want to raise my concerns about that in the future.

The long-promised reopening of Mitcham’s local Wilson hospital as a local care centre has still not happened, even though it is in the Merton ward with the lowest life expectancy, while the redevelopment of the Nelson as a local care hospital in neighbouring Wimbledon, one of the wealthiest places in south-west London, is under way. Also, after one of the biggest top-down reorganisations in NHS history, GPs are being forced to become managers rather than clinicians, so I think it is fair to say I have a lot of concerns.

In the case I am raising today, however, the problem is much more fundamental. It is about the price of a man’s life. Is £5,000 too much to pay to keep someone going? It is also about a controversial drug and the terrible way the NHS deals with patients who slip between the gaps. In a small way, it is about how NHS managers avoid their responsibilities and ignore elected representatives such as me. But most of all it is about my constituent, Mr Liakuat Aziz, and whether he should be allowed to have the treatment he desperately needs. Mr Aziz is 61 and lives in lower Morden.

In December, he came to my advice surgery. He is a nice man who has worked hard, and he has a family. He has been through a lot, and just at the point he thought he was making progress, he has hit a brick wall. His story touched me straight away. Mr Aziz explained that he had had numerous long-term health conditions, although when I saw him he seemed well. In 1995 he had a coronary artery bypass graft. After the operation, he had numerous setbacks and developed severe lung injuries. He had a tracheostomy and was found to have significant restrictive lung disease. He also suffers with ischaemic heart disease and underlying emphysema. He underwent right heart catheterisation, and he had significant pulmonary hypertension.

Fortunately, Mr Aziz was placed under the care of some amazing doctors. In particular, he is being treated by Dr Stephen Brecker, Dr Phil Marino and by one of the leading practitioners in this field, Professor Brendan Madden, at the St George’s and Royal Brompton hospitals’ joint pulmonary hypertension clinic. Despite all that treatment, Mr Aziz was still in a very precarious condition, with severe pulmonary hypertension group 2 and group 3 disease. In addition, he had long-term lung fibrosis from cardiac surgery, ischaemic cardiomyopathy and a biventricular implantable cardiac defibrillator in place—that is not very easy to say, let to alone live with.

By January 2011, his condition had worsened. He suffered from breathlessness and he could not get around. His doctors decided to try a new treatment—sildenafil. To you and I, Mr Deputy Speaker, the word “sildenafil” might not mean very much, but we have probably heard of its other name—Viagra. Most people think of Viagra as a fun drug or as a relatively trivial treatment for erectile dysfunction.

I do not want to go into the rights and wrongs or the merits of Viagra today. It is well known as a sex aid, but what a lot of people do not know is that Viagra is also a very effective treatment for pulmonary hypertension. It is not the only treatment, and for many patients it will not be suitable or cost-effective, but given Mr Aziz’s numerous lung and heart conditions his doctors thought that sildenafil was a solution. Indeed, numerous medical studies have shown that it has a role to play.

Professor Madden himself conducted one such study in 2006, with Allenby, Loke and Sheth. After looking at the evidence from a group of patients, they concluded: “Sildenafil offers potential to treat patients with pulmonary hypertension by selectively inhibiting phosphodiesterase type five pathways in the lung.”

Between them, they concluded that it should be recommended for selected patients with pulmonary arterial hypertension. Every one of their patients saw reduced pulmonary vascular resistance, and all could walk further and faster as a result. The same conclusions were made by the much larger Task Force for the Diagnosis and Treatment of Pulmonary Hypertension of the European Society of Cardiology, and the European Respiratory Society, endorsed by the International Society for Heart and Lung Transplantation.

Their 2009 report is the basis for commissioning policy, and is responsible for the current guidelines into the treatment of pulmonary hypertension. Their conclusion was that “Sildenafil is an orally active, potent, and selective inhibitor of phosphodiesterase type-5.” They found that various studies “confirmed favourable results on exercise capacity, symptoms, and haemodynamics.”

So the medical community agrees that in certain circumstances it is a legitimate treatment. Professor Madden duly began Mr Aziz on sildenafil and, thankfully, Mr Aziz responded. St George’s hospital’s department of cardiothoracic surgery has written to me to say that Mr Aziz “had an extremely good symptomatic response to Sildenafil”.

By March 2012, his mean pulmonary artery pressure had dropped to just 28 from 40 the year before. His pulmonary vascular resistance was down to 2.9 Wood units from 4.5. He could walk without being out of breath and all was well, until suddenly Mr Aziz was contacted by his local GPs at the Cannon Hill Lane surgery to say that they could no longer prescribe him with sildenafil as Sutton and Merton primary care trust had instructed them to stop prescribing it.

It transpires that throughout 2012, the PCT had been advising the GPs not to prescribe the drug but Professor Madden and other doctors had repeatedly stepped in. I have been shown letters and applications on Mr Aziz’s behalf throughout 2012, one from March, one from July and one from October. I believe there are more, but in the end, despite it being pointed out that discontinuing the prescription would be “a threat to Mr Aziz’s life”, and despite his having been on it for nearly two years, the NHS decided it would not fund it. Viagra, even for a sick man, was not the sort of thing it wanted to be seen prescribing.

That is where I came into the picture two and a half months ago. As MPs, we see lots of people. I take up thousands of cases a year and I write tens of thousands of e-mails and letters on behalf of my constituents, but only very rarely do I get involved in such a story, which is really about life and death. I knew I had to work urgently. I wrote to all the doctors, the PCT and the NHS.

Professor Madden wrote straight back, and what he said only added to the urgency: “Mr Aziz has benefited significantly from Sildenafil therapy, and it is my opinion together with that of my colleagues Dr Phil Marino and Dr John Wort, Consultant in the Pulmonary Hypertension Unit at the Royal Brompton Hospital and Dr Stephen Brecker, Consultant Cardiologist at St George’s Hospital that Mr Aziz should continue on Sildenafil therapy.” I was shown notes that showed that before he was put on 50 mg doses of sildenafil, Mr Aziz “experienced a marked and constant deterioration in both symptoms and functional capacity...despite aggressive optimisation of his cardiorespiratory co-morbidities.” Before taking sildenafil, Mr Aziz had exercise tolerance of under 50 yards. According to the notes, he had “genuinely disproportionate and at least moderate pulmonary hypertension out of keeping with his existing co-morbidities”. He was, in short, in a very bad way.

Even after Mr Aziz was put on 50 mg doses, the doctors sought out other solutions as they wanted to be sure the treatment was not too extravagant. They twice reduced the dose to just 20 mg, but both times, according to the notes, “he rapidly experienced an increase in symptoms and functional decline that only resolved on restoring the dose to 50 milligrams.” It was obvious to the doctors that Mr Aziz had “shown a clear response to Sildenafil based on symptoms, functional capacity and right heart catheter data.”

The doctors clearly concluded that, in line with the medical studies I mentioned earlier, Mr Aziz was an exceptional case and was best treated by what we would call Viagra. His course of sildenafil, which costs less than £5,000 a year, was making a difference to him and it was not insignificant. Chillingly, Professor Madden wrote to me to say: “We are all of the opinion that his condition could deteriorate precipitously if the medication were to be stopped, and indeed this could bring about his premature death.”

When I received that letter, it brought home to me what I was dealing with. Professor Madden, one of the most eminent practitioners in his field, had told my constituent he could die and, naively, I thought that meant that the case would be dealt with urgently, so I waited for my local NHS to get in touch. I waited. I wrote e-mails and letters reminding the NHS that the issue was quite urgent, and I carried on waiting. My caseworker phoned virtually every day and, on 23 January, we started counting the calls. We called Ann Radmore, the chief executive of NHS South West London. She would not take our call, but her office asked us to speak instead to the chief officer of Merton’s new clinical commissioning group, Eleanor Brown. We left a message, but did not get a call back. We called Tony Foote in Ms Radmore’s office and he promised we would get a call by 30 January. We did not, so we rang and rang every day, and they said we could only speak to Mr Foote, but he was never in and he never rang back.

At one point, things looked up. On 8 February Ms Radmore’s PA actually spoke to my caseworker and promised to get back to me. But then nothing, and the waiting continued. No one answered the phone. No one got back to me. Here was a man who could die without this drug, but the bosses at Sutton and Merton primary care trust would not even deign to talk to his MP.

Eventually, I had no choice. Two months after first contacting them, I raised the case at Prime Minister’s questions. I complained that I had been “defeated in my attempts to get a response from NHS South West London” and asked if he would help me get a response. Otherwise, I said, “my constituent might die”. He replied that he would “try to get a better answer”.—[Official Report, 13 February 2013; Vol. 558, c. 853.]

I am not necessarily a fan of the current Prime Minister, but I have this to say about him: he has astonishing powers. Within five minutes of my asking him, while he was still standing at the Dispatch Box in this Chamber, my office had a call from the local NHS. Yippee, I thought. Finally someone was taking this seriously. All the stops would be pulled out. Progress would be made. Somebody would talk to me. We would clear things up. Mr Aziz would be all right. No, the caller simply said, “Ah yes, about your case. We’ll try to find out what’s going on.”

A day or two later I got a letter from Eleanor Brown. It is not a very helpful letter, but it is a classic of its kind. It starts with a belter of an apology: “I must apologise firstly for the undue delay in providing this response.” It continues: “I understand that your letter was not, for reasons at present unclear to me, received in this office at the time of posting.” Not a good start, but she goes on: “However, once received by email . . . there were, unfortunately further delays.” She does not specify what these were, but continues: “Although there were certain extenuating reasons for these”— again, she does not say what these were, but it is nice to know there were some reasons— “this was clearly unacceptable, particularly in circumstances such as Mr Aziz’s.”

The letter goes on to say: “Please pass my sincere apologies to Mr Aziz for any distress and inconvenience this may have caused.” Nothing about all the phone calls, nothing about my having to go to the Prime Minister himself, but we will let that pass because at least I had been given a clear and thorough explanation of the case, hadn’t I? Well, not quite.

There follow two pages of droning procedural equivocation, but no answer to the basic question: was the treatment right in this exceptional case, and is £5,000 too much for a man’s life? Instead, I am treated to long passages of tedious linguistic somersaults desperate to pummel me into accepting that, despite all the evidence, this is not an exceptional case. For instance, “The fact that a treatment is likely to be efficacious for a patient is not, in itself, a basis for an exception” and “If a patient’s clinical condition matches the ‘accepted indications’ for a treatment that is not funded, their circumstances are not, by definition, exceptional.” There is even the most remarkable leap of logic, when Ms Brown says: “NHS Sutton and Merton was not withdrawing funding as funding had not been approved initially.”

It seems to have been overlooked that this was a letter that would be read by a human being. The letter concludes: “I hope I have been able to reassure you, and Mr Aziz, that in reaching the decision regarding funding all correct procedures, as used throughout the whole of the NHS South West London area, were followed and done so in a timely manner. Yours sincerely”. Crikey. Now that I think about it, if there is one thing that has impressed me about my local NHS in this case, it probably has not been its procedures.

A number of issues remain. Professor Madden, who remains one of the most learned doctors in this field, continues to believe that Mr Aziz’s only hope is sildenafil. Professor Madden has once again re-applied for funding. He continues to argue that Mr Aziz’s case really is exceptional, owing to his heart disease, his lung disease, his diabetes, his emphysema, and so on—all his very particular conditions. Mr Aziz did receive the treatment, and it did work.

Professor Madden continues to believe that without treatment Mr Aziz would deteriorate, and that the cost of his inevitable hospitalisation would far exceed the cost of the drug. According to Professor Madden, only 4,500 people in the country suffer from pulmonary arterial hypertension, and Mr Aziz’s co-morbidities are extremely rare. I have no doubt that the NHS receives many requests for Viagra, but this one is truly exceptional. Perhaps the Minister will enlighten me—is it only my local NHS that says £5,000 is too much for one man’s life? Would Mr Aziz have a better chance if he lived somewhere else?

Based on my experiences over the past two and a half months, I know whose opinion I trust. Is it that of one of the country’s leading experts in chest conditions or that of the people who lose letters, do not reply to phone calls or e-mails, specialise in extenuating circumstances and do not communicate in human?

Mr Aziz is a good man with an extraordinary medical history: group 2 pulmonary hypertension and group 3 disease, on top of massive cardiac and lung disease. He is a testament to our NHS. However, he needs a drug that most people, if they are honest, think is a bit of a joke: Viagra. He needs it not for recreational purposes, but to stay alive. My local NHS would rather let him suffer than allow him the only drug that works on him.

It would cost thousands of pounds a day to look after him in hospital, but they will not provide £5,000 to keep him out. They have behaved appallingly to him and treated me and my office with a basic lack of respect. We all know that the NHS is facing pressures it has not had to face before, but in this case Viagra is not a sex tablet; it is a life-saver. The medical consensus is clear that in exceptional cases, such as Mr Aziz’s, it should be prescribed. I hope that the Minister will be able to concentrate her reply on this specific point: even though it is for Viagra, is £5,000 really too much to pay for a man’s life? Thank you, Mr Deputy Speaker, for the opportunity to make the case.

1 Mar 2013 : Column 647 2.51 pm

The Parliamentary Under-Secretary of State for Health (Anna Soubry):

I congratulate the hon. Member for Mitcham and Morden (Siobhain McDonagh) on securing the debate and on rightly bringing this matter to the House’s attention. I hope that I can offer her, if not the answer to her question, a number of points and perhaps arrange some sort of meeting between her, the local PCT and all those involved in Mr Aziz’s care to establish why he is not receiving the treatment that he and Professor Madden believe he should have.

The PCT should be held to account for why it has not provided that treatment. That really is where the problem, if it is a problem, and certainly the responsibility lies. The hon. Lady will know that PCTs have been around for some time. One of the reasons why the Government were so keen to introduce the Health and Social Care Act 2012 was to abolish PCTs and have exactly these sorts of commissioning decisions, which have frustrated so many Members on both sides of the Chamber, made by those best placed to make them: clinicians, effectively through GP-led clinical commissioning groups. As a result of the Act, those people will make such decisions in future.

The hon. Lady started her speech with a political point, so I will make a political point as well. We wanted to get rid of PCTs because too often they are overly bureaucratic and they are certainly not accountable. It was our desire to change that by taking the decisions away from bureaucrats and putting them back in the hands of clinicians. That was one of the fundamental underlying reasons why we were so keen to get the Act through this place and on to the statute book. Far from damaging the NHS, and far from denying patients medications and, perhaps most importantly, explanations, the Act will ensure that these types of problems no longer exist.

It is not for me, as Minister for Public Health, or through any other role that falls within my brief in the Department of Health, to make a case for or against the PCT’s decision. Its members will certainly receive a copy of the Hansard report of this debate so that they can read the hon. Lady’s remarks and mine. I understand that there is a chance that they may be watching this debate. If so, no doubt many of them will be hanging their heads in shame. If they are not, then frankly they should be, if the hon. Lady is accurate in her description. I think that she must be, because I too have a copy of the letter from the Sutton and Merton borough teams that she quoted.

It seems that they have a profound problem somewhere in their system, because they clearly did not answer her letters or e-mails or respond to her telephone calls. She is the Member of Parliament. This is about her constituents and her local PCT, and if there is anybody it should respond to, it is the Member of Parliament.

MPs are the people who come to this place to represent the people in their wards and absolutely to do what she has done, which is to advance the case of Mr Aziz. For all I know, there may be a very good reason, not just financial but clinical, as to why this particular gentleman should not receive this particular drug—I know not. I know it sounds awful to say it, and I hate saying it, but it is not my job to know.

It is not the job of a Minister to say that somebody should or should not receive a treatment. However, it is my job to make it absolutely clear that whoever someone is in the NHS, they should treat that person with care and compassion. That means that they should sit down with somebody like Mr Aziz and explain to him, or perhaps to his elected representative or his general practitioner, the good, solid reasons as to why or why not a particular decision has been made.

It is absolutely vital for them to have the courtesy, never mind the care that we would hope for, to do that. I admit that it might have been late in the day, but I specifically asked my officials to contact NHS South West London to obtain some sort of statement that I could present, because I do not want to do anybody any injustice—Mr Aziz or, indeed, the PCT. Unfortunately, the statement that I have is handwritten and I am having difficulty reading it, so I will not read it out. In fact, it does not tell me anything that I have not already been told.

It is important to explain that National Institute for Health and Clinical Excellence provides the NHS with evidence-based guidance on the clinical effectiveness and cost-effectiveness of drugs and other technologies. NICE, as an independent body, makes the decisions on whether a particular drug has a clinical or cost-effectiveness basis on which it should be prescribed.

Where treatments have been positively appraised by NICE, PCTs are legally obliged to provide funding for them. However, NICE has not issued any guidance to the NHS on the use of sildenafil nitrate for the treatment of pulmonary arterial hypertension. That is the problem. It is because NICE has not given that advice to the NHS that the treatment is at the discretion of the PCT and we are in difficult times. There were difficult times under the previous Administration. There always are, because we do not have a bottomless pot of money, and treatments—often brilliant treatments—increasingly cost huge amounts of money.

Siobhain McDonagh:

On that precise point, Mr Aziz, who is here listening to this debate, said to me on the way in, “Siobhain, I have paid my taxes for 35 years. I do not want a drug that makes me look better—I want a drug that is going to save my life.”

Anna Soubry:

I was coming to that in due course. Apart from making these comments at the Dispatch Box, I cannot advance Mr Aziz’s case, because I do not know his case. I know what the hon. Lady has said, and I know that he has been through, to use these awful words, due process. His application has been considered. Having looked at what the PCT says in its letter, I can see that his case has been through all the sorts of processes that one would expect.

I hope and pray that in the course of all that and through the various appeals that he has made, everything has been properly considered by the PCT. It strikes me, however, that the most obvious thing that should have been done has not been done. Nobody seems to have sat Mr Aziz down—this is not the hon. Lady’s job, because she knows no more than I do—and explained things to him.

If there is a good reason, he should be told. If it is about the money, we need to know exactly what the problem is. I suggest that those who may be listening, whether they be in this building or watching on television, should sit down with this man and discuss the way forward for his treatment. They should provide him with an explanation, because he is not just a human being—and it does not matter whether he is a good or a bad man—but one who is extremely ill with a life-threatening disease. Somebody needs to sit down and do a proper job on this, just like the hon. Lady has done in bringing the case to the House.

I despair—we should not have to be here, but we are. The emergence of the clinical commissioning groups will lead, I hope, to a far better system. They will make decisions based on their own knowledge and understanding as clinicians. They will also, in many ways, be far more accountable than primary care trusts have been. Every CCG will have a representative on the upper-tier local authority’s health and wellbeing board. The theory that generated the highly controversial legislation that went through this place is that it would be much better for decisions to be made at a more local and accountable level by those best placed to make them, namely health professionals.

I fear that I have not been able to answer the question asked by the hon. Lady and Mr Aziz, whom I wish well, as we all do. I hope that, as a result of this debate, which the hon. Lady quite rightly called for, people will sit down and not only perhaps have a rethink, but certainly give a human being an explanation, if for no other reason than because, at the end of the day, he pays their wages. On those somewhat positive remarks, I hope that this matter might be concluded to everybody’s advantage.

Mr Deputy Speaker (Mr Nigel Evans):

As we conclude proceedings, may I wish you all a happy St David’s day.

Question put and agreed to. 3.2 pm House adjourned.


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