NHS: Antiphospholipid Syndrome (APS)

Baroness Drake Excerpts

Monday 9th March 2015 Lords Chamber

Asked by

[Baroness Drake]

To ask Her Majesty’s Government what actions they are taking to raise awareness of the autoimmune condition Antiphospholipid Syndrome (APS) amongst general practitioners and throughout the National Health Service.

[Baroness Drake (Lab)]

My Lords, I am keen to understand what the Government are doing to raise awareness of the autoimmune condition antiphospholipid syndrome—APS—among GPs and throughout the NHS, and to promote greater doctor recognition of the symptoms and earlier diagnosis.

APS, also referred to as Hughes syndrome, is an acquired autoimmune condition. The clinical features include thrombosis—venous, arterial and microvascular —and/or pregnancy complications and failure. It is important to recognise APS in the context of these problems and the need for appropriate treatment to reduce the risk of recurrence. In APS, the immune system produces abnormal antiphospholipid antibodies that target proteins attached to fat molecules called phospholipids, which makes the blood more likely to clot. There is currently no cure for APS but, if diagnosed, the risk of developing blood clots can be greatly reduced.

APS can affect people of all ages but it most usually affects adults aged 20 to 50, and affects more women than men. The exact prevalence of APS in the population is not known, but it is estimated that APS is present in around one in six of patients who have thrombosis or pregnancy loss, and present in 13.5% of strokes, 11% of heart attacks and 9.5% of DVTs. There is a need for a high-quality study of how common diagnosed APS is in the UK. Simple blood tests that identify APS, available in every district general hospital in the country, can often explain the underlying causes of strokes, heart attacks, pulmonary embolism and recurrent miscarriages. However, the condition is still poorly recognised in the UK. These simple blood tests can achieve earlier diagnosis and treatment for many patients, but there is an issue not only with testing, as some clinicians do not think of the diagnosis in the first place.

It is essential to raise awareness of APS among GPs and throughout the NHS. In my personal experience GPs and dentists, even if aware, are often not confident of treating patients who have it. This resonates with the findings of the charity the Hughes Syndrome Foundation, which ran a poll on the HealthUnlocked website. It found that 40% of GPs were aware of the condition but hardly any were confident in diagnosing or treating it. When the issue of making doctors more aware of APS was raised previously with the Department of Health, the response was that there are hundreds of different medical conditions and there is no particular reason why more attention should be drawn to this one—an opinion that I believe needs to be challenged.

There has been a significant increase in the level of research into APS, expanding the evidence base which continues to confirm that APS contributes significantly to the incidence of strokes, heart attacks, recurrent miscarriages and DVT. This is increasing awareness of the syndrome and the need for long-term treatment but, notwithstanding the growing body of evidence, while there are NICE guidelines for prevention and treatment of venous thrombosis there is none for APS.

The world of obstetrics has been one of the first to pick up on the syndrome. There are guidelines published by the Royal College of Obstetricians and Gynaecologists on the investigation of recurrent miscarriage, one of which is that women who have three consecutive miscarriages before the 10th week of gestation should be tested for APS. As a woman, one inevitably asks why it is necessary to suffer the deep distress of three failed pregnancies before blood tests are undertaken. Why can it not be done sooner? There are many other causes of miscarriage but that is not an argument against early testing of APS as, if its presence is confirmed, it is often treatable. The recognition and treatment of APL-positive pregnancies has undoubtedly delivered an improvement in pregnancy figures, but some hospitals do not include APL in their pregnancy screening. Yet APL-positive pregnancies increase the odds of stillbirth by between threefold and fivefold.

Guidelines on the Investigation and Management of Antiphospholipid Syndrome, published by the British Committee for Standards in Haematology, recommends that anyone under the age of 50 who has a stroke should be tested for APS. However, empirical research, again carried out by the Hughes Syndrome Foundation, found that not all the tests which look for APS are included in thrombophilia screens around the UK. The UK’s National Screening Committee’s guide to such screens states that the typical test includes lupus anticoagulant, but there is no mention of anticardiolipin or anti-beta-2 glycoprotein 1 tests. The Hughes foundation research reveals that not every hospital even tested for the lupus anticoagulant. If someone under 50 has a stroke, it is not certain that guidance will be followed or key tests carried out.

As clinical recognition has increased, so has the spectrum of signs and symptoms of APS to include features such as balance problems and gastrointestinal pains—symptoms which, when looked at holistically, can be indicative of APS. By not achieving greater awareness, pulmonary embolisms, strokes, heart attacks and miscarriages which are due to APS and often preventable will continue to occur, exposing individuals to risk and the NHS to much greater costs.

What action are the Government taking to raise awareness of antiphospholipid syndrome among general practitioners and throughout the NHS? What are they doing to promote greater doctor recognition and diagnosis of APS? What action are they taking to promote earlier and more routine blood testing to identify the condition? Will the Government promote APL testing in pregnancy screening throughout the NHS and review the policy whereby women have to have the distress of several miscarriages before they are tested for APS?

People with undiagnosed and untreated APS face being unwell over long periods, often for the want of simple blood tests. They can despair of ever finding a confirmed diagnosis or course of treatment, yet the treatment of APS can be life-changing. I conclude with a real-life clinical case study. Over a 30-year period Mrs A, now 50, suffered two DVTs, one pulmonary embolism, angina, transient ischaemic attacks, three miscarriages and, finally, a slight stroke. Eventually she was diagnosed with APS. I had my own journey, but eventually I met the wonderful doctors at Guy’s and St Thomas’ Hospital.