NHS: Antiphospholipid Syndrome (APS)

Baroness Morris of Yardley Excerpts

Monday 9th March 2015 Lords Chamber

[Baroness Morris of Yardley (Lab)]

My Lords, I am delighted to be able to contribute to this short debate on getting greater awareness of antiphospholipid syndrome in the NHS, particularly among GPs. I declare an interest: I am chairman of the Hughes Syndrome Foundation, and I am very pleased to be so. I test positive for antiphospholipid but have had no more than minor symptoms. Where I am unusual is that I had a GP who spotted the signs early on, for which I am grateful. We need to get to a position where that story of early identification, and therefore no great illness other than minor inconvenience and minor treatment, becomes the norm, rather than stories such as the one that my noble friend Lady Drake finished her speech with.

The first point to make is that this is not a rare condition; few people have heard of it—it has a very complicated title, which does not help—but it is not rare. One in six miscarriages and instances of thrombosis, and probably most heart attacks, DVTs and strokes in people under 50, can be put down to antiphospholipid syndrome. Converting that percentage into cases, if you say that 10% of DVT clots can be attributed to APS, gives a figure of 3,000 events in the UK a year. So although this has only relatively recently been identified, it is not a rare condition. I bet I can say that almost all of us know someone who is APS-positive but we do not know it. The problem is that they will not know it either.

APS is essentially a success story. It was identified in 1983, and since then remarkable progress has been made in clinical and scientific research. PubMed is an international directory of worldwide scientific research. When we at the foundation looked at the publications in 2006, relatively recently, there were 20 published research papers. By 2014, that had grown to 602 published research papers each year. There are international collaborations under the banner of APS research, and recently at UCL here in London the UK Antiphospholipid Syndrome Society was formed, bringing together haematologists and rheumatologists—APS specialists are usually found in those departments—to collaborate and continue with research.

About 18 months ago we at the Hughes Syndrome Foundation realised that one of the things our patients were saying was that they did not know where the consultants were. We put together a directory of consultants in the UK and found that there are 100 consultants in hospitals in this country. So there is a growing body of evidence about antiphospholipid syndrome, and it has worldwide recognition.

It is not just that we know more about APS; the treatment is successful as well, as my noble friend Lady Drake indicated. There is no cure, but it is treated with anticoagulant medicines. The effect of that on women who have had previous miscarriages is that the success rate of 20% before 1990 among people with APS is now over 80% today. I think noble Lords can imagine what that means to women who have had three or more miscarriages, are treated and then have over an 80% chance of delivering safely.

Given this success story—success in identifying and researching the condition, relative success in being able to treat it—it is incomprehensible that there is such poor awareness of the condition elsewhere in the National Health Service and among GPs. Quite frankly, it is a lottery as to whether a diagnosis is ever made. Good-quality international work on this shows that on average patients wait three years for a diagnosis. We at the foundation put out a questionnaire to our members and found that a third had waited over five years for a diagnosis, and if you read their stories of going from consultant to consultant and from doctor to doctor, with no one recognising that this might be the cause, it is easy to see how early identification would make a real difference to them.

It matters that there is early identification, not only because treatment can be preventive—it might not cure the condition but it can prevent the worst effects of antiphospholipid syndrome being experienced by patients—but because once it was identified, more appropriate treatment could also be given. This is part of the problem: GPs or experts sometimes say, “Ah well, we’ll spot the thrombosis anyway. We don’t need to test for APS. Once the thrombosis happens, we’ll treat it as well as we can”. The point is that the treatment for thrombosis, for example, is different for those who have APS and those who do not. If you have thrombosis, you are likely to be put on warfarin for a period of three to six months. If you have thrombosis and APS, you need much longer-term treatment than that and will probably be on an anticoagulant for the rest of your life. Identifying APS as a cause of other conditions matters because it is the right thing to do, but also because it might determine the type of treatment that is given.

I suspect that the Minister’s experience in debates such as this is that people come forward and say that they want to bring the benefits of research and clinical progress to as many people as possible, and the debate then centres on the cost of drugs or the availability of specialised equipment. We all understand the difficulty that the National Health Service experiences in trying to afford bringing all the advances in medicine to patients who need them, but that is not the issue that we bring to this debate today. APS testing is relatively inexpensive: £25 for the two tests that are needed. As my noble friend Lady Drake said, the two simple blood tests can be requested by a GP. The barrier to testing is not a lack of resources or expensive equipment; the issue is that we have a disjuncture between what is happening at the clinical research level and how it is being acted on, particularly among GPs. I do not blame GPs for this. It is not surprising, given that there is so little planned structure for making GPs aware of the signs of the condition or its treatment. There is nothing in the NICE guidelines. It is not included in GP training, and even GPs who are aware of APS lack confidence in knowing how to treat it and to take it forward.

As a non-medical person, I think I understand how this has grown up over the years. APS affects all parts of the body, so every expert, every clinician, needs to be aware that APS might be a cause or a contributing factor, but because of this it has too often been seen as a second-order condition and has not been the first thing that specialists look at. Given the growing body of knowledge and evidence about APS and its treatment, it should now, 30 years after it was first identified, be seen as a condition in its own right. It needs to come in from the edge of medical awareness and be seen as part of mainstream diagnosis and treatment.

Some years ago, the Hughes Syndrome Foundation received a grant from the National Lottery and was able to send leaflets to GPs to try to raise awareness of the condition. It has just got a new leaflet and intends to do that again, but frankly that is not what should be happening. We are very happy to send out leaflet after leaflet, but we need a bit of help from the established part of the National Health Service that is meant to raise awareness among GPs. I therefore join my noble friend Lady Drake in her request to the Minister to say what else can be done to raise awareness among GPs.

I do not know what the Minister is about to say, but I suspect he will tell us about the things that already happen and that have been put in place to raise awareness about APS among GPs. All I can say is that it is not enough. It is not working. Too many people who have APS are still not having it identified as quickly and early as possible. They are not having the treatment that they need and the preventive treatment that can keep them well. All of us would want to overcome this problem with a £25 blood test. I am grateful to the Minister for his courtesy in asking us in advance about the issues that we wanted to raise, and I look forward to his response.