Action on Thrombosis
The final item of business today is a members' business debate on motion S3M-2482, in the name of Trish Godman, on action on thrombosis. The debate will be concluded without any question being put.
Motion debated,
That the Parliament notes with concern that, according to provisional figures from the Scottish Government, the total number of deaths from thrombosis in 2007 was 12,275, which represents 21% of all deaths in Scotland; further notes that in 2006 thrombosis killed more than fifty times the number of people who died from MRSA and Clostridium difficile combined, and therefore considers that action should be taken to increase awareness of thrombosis among the public and health professionals and establish an effective prevention strategy for thrombosis in Scottish hospitals, such as some sort of screening regime, to help save valuable NHS resources from treating a disease that can often be prevented if a patient knows they are at risk in the first place and to help avoid tragedies like that of Katie McPherson from Langbank, who died as a result of deep vein thrombosis.
Katie was 23 years old when she died of deep vein thrombosis. She had tried three times to get treatment, in two hospitals and from her general practitioner. She knew the symptoms. A friend of hers had written a thesis on DVT, which they had gone over line by line. Edinburgh royal infirmary carried out a venometer test, which showed a restriction in her left leg. A second test—a venogram—proved inconclusive. Katie was sent home. Why was no ultrasound or D-dimer blood test performed to be absolutely sure? Katie had tried to get help on 17 January. On 25 January, her father picked up a medical certificate that stated:
"Severe left calf pain—query DVT?"
Twenty-four hours later, Katie's self-diagnosis tragically proved to be correct. After Katie's death, the procurator fiscal concluded that Katie had been properly treated. Strangely enough, two months later, Edinburgh royal infirmary—the first hospital that she attended—changed its procedures for diagnosing DVT.
So what can we learn and what can we do? The key issue is to raise public awareness and to improve clinical practice. Both the public and the medical profession appear to underestimate the risk. Most people to whom I have spoken think that people get DVT if they have been on a long plane journey. That is wrong. Being a smoker, being over 40, being overweight, having an inherited blood-clotting disorder, having had major surgery and—most certainly—having been inactive for some time are just some of the possible causes.
Hospital protocols differ, as we saw in Katie's case. Should they not be the same? Surely if there is any doubt, further tests should be automatic. After Katie's parents made representations to the Public Petitions Committee and the Scottish Public Services Ombudsman reported that several hospitals were failing to diagnose DVT, the Government funded Lifeblood: The Thrombosis Charity to produce an information leaflet. Every GP practice in Scotland received one. Unfortunately, we have evidence to suggest that some of them went straight into the bin. I know that MSPs have been asked to visit their GPs' surgeries. If they have already done so, I ask them to check whether the surgery has the leaflet and whether it is displayed prominently. If not, I can give members some copies. If members have not already visited their GP's surgery, I ask them to come and speak to me.
There is a need to consider local protocols, local access to educational material and local patient information that is easy to understand. There is also a need to be proactive and to research early screening and the causes, prevention and treatment of DVT. We need to get the information out there and to listen to patients.
Each mainland health board received £40,000 for the prevention and treatment of Clostridium difficile, which is quite right—no one is going to argue with that. Apart from the leaflet that Lifeblood produced, I can find no evidence of specific funding for the prevention and treatment of DVT. Why?
After almost six years, Katie's family is waiting to be offered screening for thrombophilia. We must seek an effective prevention strategy and eliminate the failure of hospitals to diagnose effectively those patients who have potentially fatal DVT. Katie's family deserves an apology for what has happened. Money should be made available for further research into screening, and the public should be made aware of the existence of screening. That must be our aim for Katie.
I congratulate Trish Godman on initiating this important members' debate, and I join her in extending my condolences to Katie McPherson's family. We need to do our best to see what lessons can be learned from that tragedy.
The term "thrombosis" means a blood clot, and it covers a wide range of conditions. Cerebral thrombosis in the head leads to a stroke, and coronary thrombosis leads to a heart attack. However, it is obvious that we are talking about deep venous thrombosis, or the blood clot that occurs in the deep veins of the leg. In itself, that does not kill, but when the clot moves on to the lungs, it causes a pulmonary embolism, blocks off the breathing and causes either severe illness or death.
I agree with the motion's call
"to increase awareness of thrombosis among the public and health professionals".
The National Institute for Health and Clinical Excellence already has guidelines for elective surgery, and the Scottish intercollegiate guidelines network has guidelines for thrombosis. I agree that there are times when either those guidelines are not followed or clinical staff are not alert to the possibility of DVT, so it is important that we take all opportunities to correct that situation.
I am not sure, however, that I go along with the idea that population screening is the answer. We know that approximately 2.5 per cent of the population has the factor V Leiden mutation that predisposes them to the development of thrombosis. However, there are strict criteria for population screening, the most important of which is that help is available for those who are found to be at risk. That is not currently the case with thrombosis. There is evidence that the long-term use of anticoagulants to thin the blood and make clots less likely to occur might do more harm than good because of the side effects. On the other hand, selective screening might have a place. For example, young women who have a family history of thrombosis and who want to take hormonal contraception could benefit from selective screening.
I hear what the member is saying, but because there are so many questions about DVT—he is asking them himself—we need money so that we can research whether there should be screening and, if not, what else we can do. The situation is too vague at the moment. There are too many questions about DVT for us to say that screening is not right.
I agree that research should be done, and that not enough has been done into the causes of DVT and its treatment. However, I still hold that it is wrong to embark on an expensive population screening programme until treatment is available that can be offered to the people whom the screening turns up. That is the general principle of screening. In the absence of the availability of such treatment, we will just frighten people without giving them any benefit.
As Trish Godman said, the general risk factors that predispose people to suffering from DVT are obesity, cigarette smoking and stasis or the slowing of circulation that can arise as a result of long aircraft flights or sitting in the chamber listening to debates for three hours, for example. It is extremely important that we emphasise to the public that those are risk factors.
There are two other measures that we should take. Most cases of DVT are diagnosed in primary care. We should make it easy for people who work in primary care to refer patients to hospital—they should not have to encounter the battery of reasons that junior hospital doctors provide for not referring a patient. In many cases, especially among the elderly, DVT is a sign that cancer is present in the body, in which case it is no good just treating the DVT and not investigating whether there is a factor in the patient's background that could be causing the problem.
In general, I am extremely pleased that we are having a debate that will highlight an important problem. I can support most of the motion, except the part of it that calls for population screening.
Once again, Trish Godman has brought to members' business an important and substantial issue. Seven months ago, the issue was the human rights of wheelchair users. I was delighted to participate in that debate, which left me committed to the issues that were raised in it. Today, on the back of a series of carefully worded parliamentary written questions that have teased out information that has illustrated the comparative enormity of the issue, Trish Godman has secured a debate on thrombosis. I congratulate her on that.
At the heart of the matter is the tragedy of one family in Trish Godman's constituency and the perseverance of Gordon McPherson, to whose efforts Annabel Goldie paid tribute when she raised the issue directly with the First Minister at First Minister's questions on 5 June.
As the terms of the motion illustrate, thrombosis is a huge reaper of lives. Because it is a sudden and silent killer, it is routinely identified as the cause of death after the event and, as a result, has not received the widespread public attention that it deserves. It is certainly true that for a time the media became excited about the possibility of fatal DVT developing on long-haul flights. As they competed to be more lurid, the news media gave the issue its 15 minutes of fame, but they have now moved on, even if sudden and unexplained deaths on flights might still make the news.
As the motion effectively illustrates, the issue has so far had none of the attendant public demand for action that issues that have taken fewer lives have attracted. That is not an argument against tackling MRSA and Clostridium difficile—far from it—nor is it an attempt to diminish in any way the lives that are lost through breast cancer, from which my sister-in-law is suffering, or as a result of HIV/AIDS or land transport accidents, which as Trish Godman established in a parallel question in May, kill only a fraction of the number of people who are lost to thrombosis.
The figures confirm that, whether through well-organised support networks or sustained and prominent media attention, other conditions and potential killer situations receive much more prominence and attention than thrombosis does. That does not happen at the expense of thrombosis, but there is an obliviousness to the condition. In other debates, I have argued that men's health issues have similarly received less attention in the absence of the well-organised and proactive campaigns that have been conducted on behalf of women's health issues. I make no complaint against those who have done such progressive work on behalf of women; I merely observe that the absence of an overtly organised campaign seems to leave progress in the treatment of certain conditions out in the cold.
That situation needs to change, and I commend Trish Godman, Nanette Milne, Jackie Baillie and Annabel Goldie who, with well-chosen parliamentary questions, have in recent months all sought to prepare the ground for what I think we all recognise is needed—a structured national awareness campaign and a developing debate on the possibility of the provision of a screening programme and comprehensive treatment.
Ahead of this evening's debate, Trish Godman asked MSPs to revert to the GP's surgery that they might have visited during the summer recess, and she did so again tonight. She wanted us to find out whether the public information leaflet that was produced in memory of Katie McPherson was on display and whether we had noticed it on our visits. The response to the second part of that request is that the leaflet was not noticeable in my GP's surgery, if it was on view. I have not yet had a response about whether it was on view, so I might have to sneak back and look for myself.
The leaflet sets out the various at-risk categories. The list is not short—it includes far more people than just those who go on long-haul flights. It includes categories of people, such as those who are obese, who are at risk of a number of potentially fatal conditions and who are targeted by more than one information campaign. It is a good leaflet that sets out the facts and does not shy away from explaining complicated matters; it is certainly helpful and to be commended. Everyone who worked hard to produce it and have it displayed deserves our thanks. However, the leaflet in itself is probably not sufficient to sustain a national effort to improve awareness.
Those who are at risk can take certain sensible actions, some of which were mentioned by Ian McKee: smoking cessation, cutting down on salt, having a balanced diet with less fat, eating more fruit, exercising and drinking less alcohol. We have heard them before and are familiar with the list. Around one in 20 people carries the thromophilia gene and about 3,000 of those who die of thrombosis do so of DVT. That group's susceptibility could be established through a screening programme.
We have talked about screening programmes before, and I know that the response of all Governments will be that they act on advice. Screening has been rolled out before, but it will be subject to review again. From experience, I am certain that, in this campaign, public awareness and demand will play a part in bringing about screening. However, I suspect that it will not happen soon.
For the moment, despite our knowledge about the reach of thrombosis, we must contemplate having a long-term campaign with key milestone objectives. Screening for those with the thrombophilia gene will be a longer-term goal. However, building on the work of the McPherson family and ensuring that general practitioners give greater prominence to thrombosis to aid a general increase in public awareness should be an immediate priority. Resolving to ensure that those who need it receive good and detailed advice should also be a priority. When the minister sums up, we want to hear how the Government will act to make progress against those objectives.
Again, Trish Godman has us debating an issue of substance. I suspect that these are the early days of a long campaign, but I wish it well and assure it of my support.
I add my congratulations to those of other members on Trish Godman securing this debate and on the way in which she graphically illustrated the tragic early loss of life that can result from sustaining a DVT that moves to a pulmonary embolus.
The numbers involved, however, must not be confused with those for total thrombosis, where the number of deaths is substantial. Trish Godman's parliamentary questions elicited the response that about 172 deaths were recorded from that cause in 2003, which reduced to 130 in 2007. That indicates a measure of progress, although it is not enough. Almost every one of those deaths—not all, but almost all—would have been untimely. Tackling the problem is an increased priority, especially because it is, to an extent, preventable. It is important that measures are taken to identify risk, and that, if something occurs, there is early diagnosis and rapid treatment.
What about screening, which is a core part of the motion? Dr McKee graphically illustrated the fact that there are rules surrounding mass screening. One of the fundamental tenets is that we must not create a situation in which we cannot ameliorate the condition that is being screened for. Frankly, it is not possible at present for us to do anything about the genetic condition of the so-called factor V Leiden gene. However, that does not mean that we should not have focused screening. It is certainly true that anyone who has a personal or family history of the condition needs to be much more aware of the potential risk and should be entitled to have screening if they so wish—that should be made available to them.
One of the best developments in surgical procedures in the past few years has been the pre-assessment of risk prior to the patient coming into hospital. That is undertaken by nurses, who are good at looking at lists of risk factors of the sort that NICE has produced, some of which were referred to by Jackson Carlaw and Ian McKee. However, as they said, the list is considerably longer and neither they nor I have time to address all of it in this debate.
I have particular concerns about two issues. One is the use of oral contraceptives, which is not generally recognised as a risk factor. The other is the use of hormone replacement therapy. Those two treatments have their consequences in increased risk, so tackling that in terms of stopping oral contraception before surgery can be important. For the pre-assessment of risk, it is important to look at the list and assess the likely risk for an individual.
The second part of the risk that needs to be assessed is whether the procedure, the likely stay in hospital and the degree of immobility are likely to contribute to increasing the risk. If they are, steps should be taken. At the most extreme, there should be prophylactic treatment in a preventive form, using either low molecular-weight heparin or aspirin. For very high-risk procedures, particularly orthopaedic ones, that may be an appropriate measure. For people at intermediate or slightly lower risk, the proper and effective use of compression stockings is believed to have considerable benefit.
During my professional life, we have moved a long way. In the past, for many surgical procedures one was required to stay immobile for long periods, and one was often kept in hospital for long periods. We have moved on—and I believe that we may at some point have a debate on day surgery. The amount of day surgery has increased enormously, and that reduces the risks of venous thrombosis. However, the great disparity between health boards in the rates of day surgery is regrettable. We could contribute to the reduction of unnecessary deaths by making further movement in that direction. The use of regional anaesthetic rather than general aesthetic can also make an important contribution to reducing risk.
This matter is important. The deaths are preventable and we must address that. We must assess risk carefully, and we must provide prophylactic treatment when appropriate.
I close with an issue that I have not yet referred to, although Trish Godman referred to it in more detail. If any signs of problems are seen, there must be rapid and appropriate testing, diagnosis and monitoring. Sometimes the venogram can be equivocal, but simply to send somebody home is not good enough. People should be monitored in some way, so that risk can be assessed and treatment applied. In the cases that we have been discussing, treatment would prevent death. As I have said, such deaths are unnecessary and should be prevented.
I, too, thank Trish Godman for securing tonight's debate. As others have acknowledged, she has made a significant contribution to raising awareness of thrombosis, and deep vein thrombosis in particular. I defer to the medical knowledge of my esteemed colleagues; I will not match their grasp of the subject, but please bear with me.
My awareness of this issue was increased by my responsibilities as shadow cabinet secretary for health. Sadly, I have since departed that role. However, during that period I met Gordon and Jane McPherson who, as Trish Godman said, have campaigned passionately for increased awareness of thrombosis since their daughter Katie died in 2003. It would seem that they were failed by the national health service, which did not diagnose Katie's condition despite her own knowledge of it.
Mr and Mrs McPherson are remarkable people who communicate their case clearly and effectively. Their impact on the political world and, I would say, the medical world has been significant. I expect that to continue. I am sure that the minister will become aware of it if she is not already.
One of my last responsibilities as shadow cabinet secretary for health was to chair an event in this Parliament on thrombosis, instigated by the work of the McPherson family. It was a telling experience. It brought together a formidable array of experts—and I urge members to look at the publication that will emerge from that extremely informative event. It was also telling because of the striking facts that emerged. We should all know them.
On the same day, there had been a Labour debate in Parliament on Clostridium difficile at the Vale of Leven hospital. It was an issue of real public concern, and I think that many members who are present tonight were present at that debate too. It was a key health issue with immediate significance for the Scottish public, but I was to learn at the seminar in the afternoon that the death toll from thrombosis is five times greater than the combined death toll from MRSA and Clostridium difficile. As Jackson Carlaw suggests, that is not an argument for lessening our concern about other issues, but a clarion call for us to step up our work on thrombosis.
I was shocked, as we all should be, that so many people are dying when their deaths are clearly preventable. As Richard Simpson said, DVT has a mortality rate of 30 per cent when left untreated, but between 2 and 8 per cent when appropriate therapy is given. It is estimated that the total cost of managing DVT in the NHS would be around £640 million across the United Kingdom. That clearly gives us an imperative to try to manage the situation. The facts all insist that we should take action and give greater consideration to the work that is going on.
Trish Godman talked about the work at GP practices, which is an issue that I am sure we will all pursue. The McPherson family is deeply disappointed that their efforts have not been taken up more widely by GPs throughout Scotland.
We need to consider local protocols and changes in hospital practice, as Richard Simpson said, but we also need to raise awareness of the issues, which is something in which the Parliament has a particular role to play. NHS Quality Improvement Scotland has agreed to carry out a stocktake of health boards' DVT work and proposes to look into how hospitals are assessing patients and how they can intervene more effectively to minimise risk and encourage more effective treatment. I hope that the minister can report back to us on that.
I place on record my personal thanks for the information and support the McPherson family gave me when I was undertaking my work as health spokesperson. They have played a critical role in awareness raising and should continue to do so. There is a real place for debate on such issues, as Richard Simpson and Ian McKee have demonstrated often in the chamber. That is a debate that we should properly be having. As Trish Godman suggested, we must all step up our work on thrombosis because lives are at risk and we could take decisive and effective action. That would be an appropriate tribute to Katie McPherson.
I add my thanks to Trish Godman for securing a debate on this important but complex issue. Her motion mentions the death of Katie McPherson, and the first thing that I want to say is how much we sympathise with the McPherson family over their sad loss. We understand the family's wish to raise awareness of deep vein thrombosis to ensure that other families are spared the grief that they have been through.
The events surrounding Katie McPherson's death were investigated in detail by the Scottish Public Services Ombudsman. The Scottish Government and a range of agencies have been working on taking forward the key recommendations in the ombudsman's report. Before I describe that range of work, I will say something about the number of deaths in Scotland that are associated with thrombosis—a matter to which Margaret Curran and Trish Godman referred.
The vast majority of the deaths are due to a thrombosis, or clot, in the arteries. Arterial thrombosis causes heart attacks and certain types of stroke. Coronary heart disease and stroke continue to be clinical priorities for the NHS because of the degree to which premature deaths from those causes can be prevented. We are doing a great deal of work to tackle the underlying risk factors for CHD and stroke through encouraging people to stop smoking, to adopt a healthier diet and to take more exercise. We are also refreshing our national strategy on CHD and stroke. Our keep well programme is about identifying people in our most deprived communities who are potentially at risk, so that they can be offered a health check to assess their risk of cardiovascular disease. Those initiatives relate to far and away the majority of the deaths that are associated with thrombosis in Scotland. I make it very clear that there is no question of there being more than 12,000 deaths a year associated with DVT.
DVT can cause death when a blood clot that has formed in a deep vein, usually in the leg, breaks off and becomes lodged in the lung. That kind of clot is called a pulmonary embolism. According to figures from the General Register Office for Scotland, there were 257 deaths in Scotland related to pulmonary embolism in 2007. In the same year, there were also 112 deaths in which DVT was recorded as the underlying cause of death.
A number of risks are related to developing a DVT, but the only one that is related to lifestyle is obesity. It is therefore worth mentioning that we are pursuing several measures to promote healthy body weight, which are backed up with new resources of £56 million.
Does the minister not agree that cigarette smoking is also a lifestyle choice that leads to an increased risk of DVT?
Yes, of course. I will say a bit more about that.
The other risks for DVT include pregnancy, age, underlying cancer, being on the pill or hormone replacement therapy and immobility. However, in most people's minds, as Trish Godman said, DVT is associated with long-distance travel. Inherited abnormalities of blood clotting can also predispose people to DVT. I will return to that later.
One of the ombudsman's main recommendations was that we should develop a standard information leaflet about DVT. NHS Quality Improvement Scotland therefore identified what it considered to be the best existing leaflet. An adapted version of it was issued to all NHS boards in January by the chief medical officer and the chairman of NHS QIS. A letter was sent to the chief executives of the boards, asking them to provide information on how they intended to adopt the standard leaflet, because it was clear from the boards' returns that the matter was a work in progress. NHS QIS is carrying out a follow-up exercise in November, as Margaret Curran said, and it will then provide another report to the chief medical officer. I am happy to keep members informed of progress in that regard.
We also commissioned Lifeblood to develop an information leaflet on DVT, which was mentioned earlier. That has been distributed to every GP practice in Scotland and I am happy to follow up some of the concerns that have been raised about whether that leaflet is being used in all practices. One of the main messages in both leaflets is that there is no definitive test for DVT. If people are in doubt, they are advised to go back to their local DVT clinic or accident and emergency department.
All that work has been undertaken on an interim basis, until SIGN completes its revision of its guideline 62, on the prevention of venous thromboembolism, or VTE. That work is well under way, and I am pleased that SIGN has included Gordon McPherson as a member of the guideline development group.
The motion refers to the possibility of establishing a screening regime. The United Kingdom National Screening Committee advises all four United Kingdom health departments and has considered proposals for the introduction of a population screening programme for thrombophilia. The discussion centres on a genetic abnormality called factor V Leiden, which has been shown to increase susceptibility to DVT and affects about 5 per cent of the population. However, it is important to realise that a positive test for that gene does not mean that a person will go on to develop VTE, and doctors would not offer any preventive treatment in those circumstances.
We have therefore accepted the national screening committee's advice that it would be inappropriate to introduce population screening for VTE. That has nothing to do with cost; it reflects a lack of evidence to justify introducing such a programme. Government action has to be evidence based.
You are saying that screening would be done in some circumstances. It seems to me that Katie McPherson's family should have some support and screening, but that has not happened in six years.
I am just about to deal with that issue. We agree that high-risk groups should be tested, and we are clear that the adult relatives of someone with factor V Leiden should be offered genetic testing and be given suitable advice in the light of the results. Testing would apply above all to people with the genetic abnormality who might be considering going on the combined oral contraceptive pill. The pill carries an increased risk of VTE for all women but, in women who carry the factor V Leiden gene, that risk is increased by a factor of three. Although that is a different process from population screening, it means that those who are most at risk should be picked up.
Attempts have been made to draw unfavourable comparisons between our attitude to thrombophilia screening and the programme that we introduced recently to assess the risk of sudden cardiac death in young athletes taking part in competitive sport. I emphasise that those are two very different issues. The cardiac assessment of young athletes is a pilot programme that is designed to contribute to the evidence base for another issue that the national screening committee has been looking at over a number of years, which is whether to recommend a population screening programme for a condition called hypertrophic cardiomyopathy. This is a good example of the way in which the committee keeps under active review the issues that it is asked to consider.
I hope that it will be clear from what I have said that we have taken the ombudsman's recommendation extremely seriously. We have also made sure that the McPherson family has been fully involved in all this work. Above all, we want to make sure that people who are at most risk of VTE are identified through genetic testing.
I am happy to keep Parliament informed of the developments as we proceed.
Meeting closed at 17:35.