New Petitions

Thank you very much.In January 2008, it will be five years since our daughter Katie died of a pulmonary thromboembolism that was brought on as a result of a misdiagnosed DVT. Our petition breaks down into three distinct sections. It calls on the Scottish Parliament to urge the Scottish Executive to introduce mandatory assessment tools for all health boards to ensure commonality of assessment and treatment of DVT; to ensure commonality of patient information leaflets on DVT throughout all health boards in Scotland; and to introduce a newborn screening programme for the factor V Leiden gene, which has been shown to increase susceptibility to DVT.First, I will deal with assessment tools for health boards. At the time of Katie's death, the Scottish Public Services Ombudsman agreed with our finding that no two health boards were working to the same guidelines. In November last year, we found out that health boards were still not working to common guidelines—in fact, one health board had no guidelines that covered DVT. It is essential that all health boards work to the same guidelines.Secondly, on the commonality of patient information leaflets, it is important that patients take responsibility for their own health. To do so, they must be better informed about the signs and symptoms of DVT. In the survey of health boards that we carried out last November, we again found that no two health boards were working to the same guidelines. Some were using pharmaceutical companies' own literature, while others were using an A4 sheet of paper. One information sheet stated that if the symptoms persist, the person should contact their general practitioner. Unfortunately, it did not state what symptoms a person should look for.Thirdly, among many things that we have found out about DVT is the fact that one in 20 of the population has a medical condition called thrombophilia, which is an hereditary genetic predisposition that makes patients more susceptible to DVT. It is a bit like the genetic predisposition that leaves patients more susceptible to cancer. If a patient has the factor V Leiden gene, that does not mean that they will get fatal DVT, but if they have had a miscarriage or if they are overweight, on the pill, pregnant, on hormone replacement therapy or simply immobile for even four to six hours, they will be more susceptible. We are asking for the baby population to be screened, because if parents and doctors know about someone's susceptibility, accurate decisions about medications and lifestyles can perhaps be made. In the same way, someone with a penicillin allergy, for example, would decide not to take an antibiotic that contains penicillin. Testing is all the more important if there is a history of DVT-related illness in the family, which is not always known. Since Katie's death, our son Steven has been tested. It was found that he has the factor V Leiden gene. Instead of worrying, he is aware of the problem and can advise doctors about it.We hope that, with commonality of protocols and procedures in testing for DVT, commonality of patient information leaflets and increased awareness of factors such as factor V Leiden, there will be a large reduction in unnecessary deaths like Katie's.It is of added interest that Katie would have been 28 this coming Sunday.

No, not at all.

It is important that all aspects of the petition are supported. On the first item, there should be commonality among all health boards throughout Scotland. Katie was in the care of Lothian NHS Board first and then the former Argyll and Clyde NHS Board. The boards had two totally different ways of assessing DVT. If both boards had used the same method, Katie would have been here today. That has been shown to be the case.On commonality of patient information leaflets, patients and members of the general public need to know what they are looking for. All too often, people think that they will get DVT only on long-haul flights. We must raise general public awareness. Again, the point of newborn screening is to raise awareness. The general public should be made aware that some people have a susceptibility to DVT, which does not mean that they will get DVT but means that they should change their lifestyle and take care of themselves.

It is important that screening is offered. We cannot possibly say that every child should be screened—we need also to consider the ethical aspects and so forth—but parents should be given the offer of DVT testing for their newborn child. If we were ever to have grandchildren, we know that our son would definitely say that they would be tested. Such testing acts as a preparation for later life. If someone were to have major surgery, become pregnant, start to take the pill, be put on hormone replacement therapy, or be diagnosed with cancer or another illness that could raise their susceptibility, the fact that they have been tested will make them more aware of the greater risk of having DVT.

It depends on the procedure that is used, which depends on the hospital to which someone goes. When I was tested for suspected DVT, I was given a simple blood test. When it came back as positive, I was automatically given anti-coagulant injections. If I had gone to a hospital 4 or 5 miles in the opposite direction, I might have had a dye injected into my veins, or had my blood pressure checked—the test depends on the hospital to which someone goes. That is one of the big points that we are trying to put across.

Yes.

No. That request has never been made. Testing for the factor V Leiden gene is not like testing for HIV. Having the factor V Leiden gene will not necessarily kill someone; they simply have a defective gene. Testing lets someone know what to do if they develop symptoms of a DVT nature. If they are going on a long-haul flight, they will know to take aspirin before they go and to do their exercises, and if they are going on a long car journey, they will know to make stops. It does not affect the quality or quantity of someone's life.

He has never been on a long-haul flight, so I cannot answer the question. I think that the longest flight that he has made was probably four or five hours long, which is probably more of an average flight time.

Insurance companies may jump on this and say, "Here's another way of excluding certain things." It is down to their ethics whether they do that, but it is not as if my son has cancer and is at risk when he flies. As long as he is aware that he has a factor V Leiden gene, and he drinks lots of fluid—I have told him before that that means water rather than cider—there is no problem.

Of course not. It is down to the insurance companies whether they wish to make an issue of it, and I do not see why they should.

That is why we are here.

We are in constant contact with NHS Quality Improvement Scotland and members of the Scottish Executive. We had a meeting in February with NHS 24, NHS Direct, NHS QIS and the Executive, and we were told that a report would be issued in March. We received it in August. We have also been told that in October a letter to all health board chiefs will be issued by Scotland's chief medical officer, countersigned by the chair of NHS QIS. I will believe it when I see it. We feel that we have to keep the pressure on because, if we do not, the issue will just keep slipping. It has to be dealt with now. With regard to DVT, everyone has thromboses travelling through their body. Normally they are small enough that they dissolve in the bloodstream. It is only when they build up to being a big clot that there is a problem.

I can refer only to the information from the chief medical officer of England, Wales and Northern Ireland, who issued a report in March or April stating that 30,000 deaths per annum can be attributed to venous thromboembolism. As Scotland represents 10 per cent of the UK population, I can only assume that there are 3,000 per annum in Scotland. However, the General Register Office for Scotland states that only five deaths in the past 10 years have been attributed to pulmonary embolisms. It is all down to how the death certificate is signed. We have been told by many consultants that they only knew that it was a pulmonary embolism that killed the person after the post mortem. Sometimes the cause of death is put down as heart attack, sometimes as a stroke, and sometimes as cancer. Sometimes it is only when the post mortem is carried out that it can be stated categorically that it was a pulmonary embolism. The other thing that the chief medical officer of England, Wales and Northern Ireland stated is that 10 per cent of all deaths in hospital can be attributed to venous thromboembolism.

I think also that approximately one person in 20 is at risk of developing deep vein thrombosis. That is another figure that came from England.

However, with regard to deaths, we can only give the figure that I mentioned.

The figures are difficult to come by. We have had great difficulty in getting accurate figures for the number of death certificates that mention deep vein thrombosis. Katie's death certificate stated that she died from a pulmonary embolism as a direct result of a deep vein thrombosis. Her post mortem showed that the clots had been present in her leg for approximately 10 days, which was about the length of time since she had first gone to the hospital with symptoms.

The health boards say that there might be 130 to 138 deaths per annum, but they cannot narrow that down to say that a definitive number of deaths are caused by DVT or pulmonary embolisms. It all comes down to how the death certificate is signed.

We are working closely with Lifeblood.

We contacted Lifeblood just after Katie's death. For our work on the issue in Scotland, Lifeblood has been feeding us with the information that it has on the situation down south. However, as I said when I first started having meetings with politicians, the issue should be dealt with not by a charity but by the national health service. Why should a charity do the work of the national health service? Yes, Lifeblood is knowledgeable—its medical director, Dr Beverley Hunt, is very knowledgeable—but why should a charity carry out work that should be done by the Government?

I know that it would be very willing indeed because I meet Beverley Hunt each month down in London.

They said that they would issue a report to all the health boards. I had sight of the first part of that report in August. They have tried to reinvent the wheel, but all that they have done is ask all the questions that we asked last November. They have gone round and asked all the health boards the same questions and have got the same answers that we got. I do not think that the report will be that much help to you.

My only point on that is that there will be a strong need for the insurance companies to become aware of all the aspects of deep vein thrombosis before they can make a justifiable decision about how they will deal with the condition. It is an issue of education. They may just fly off the handle and say, "We're not going to insure anyone who tests positive for the factor V Leiden gene."

We had a meeting, at which we were assured that we would have a report on our desks. It took a further three months of harrying to get part of the report sent to us. The report should have a beginning, a middle and a conclusion. All that we got was a copy of the beginning, which we provided. As far as the middle and the conclusion are concerned, there is nothing there—there was nothing there in August. September has gone by and we are now in October. It took from February or March until August for me to get the first 44 pages of a 67-page report. All of a sudden, 23 pages will be produced in a much shorter length of time.I am extremely apprehensive about the contents of the report. I think that it will be inconclusive. I have a funny feeling that it will say that we should wait for two years to see how matters take shape and to build up more statistics. The chief medical officer in England says that there are 30,000 deaths per year from DVT. That means that there have been 150,000 deaths that can be attributed to DVT since Katie died. If we wait a further two years, there will be another 60,000 deaths, which will bring us up to a total of almost a quarter of a million deaths—and that is without including deaths in Scotland.

As a family, we feel that we have done as much as we can to get to this stage. It is time for action. People have been palming us off, giving us copies of this and bits of that. We feel that we cannot do any more. We need help to continue our campaign. Action is required. Something needs to be done because the present situation cannot be left to continue.

Thank you for listening to us.