The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)
My Lords, I begin by congratulating the noble Baroness, Lady Drake, on securing this debate about a condition that, it is fair to say, receives little parliamentary attention either in this House or the other place. I also thank the noble Baroness, Lady Morris, and the noble Lord, Lord Hunt, for their excellent and powerful contributions. I listened with care to all that they have said.
Many of us—other than perhaps the two noble Baronesses—will be unfamiliar with antiphospholipid syndrome, or APS, so at the risk of repeating the information so usefully set out by the noble Baroness, Lady Drake, it may be helpful if I begin by explaining a little more about the condition.
APS, also known by some as Hughes syndrome, is a disorder of the immune system which causes an increased risk of blood clots. APS can affect people of all ages, including children and babies. However, it usually affects adults aged 20 to 50, and affects three to five times as many women as men. It is not clear how many people in the UK have the condition, although some estimates say that it affects at least 1% of the population.
People with APS may experience myriad symptoms. These can include headaches and fatigue as well as problems with mobility, vision, speech and memory. People with APS are also at risk of developing potentially life-threatening conditions, such as deep vein thrombosis—a blood clot that usually develops in the leg—and arterial thrombosis, a clot in an artery, which can cause a stroke or heart attack. It is estimated that APS is responsible for one in every six cases of deep vein thrombosis, strokes and heart attacks in people under 50. As has been said, pregnant women with APS also have an increased risk of having a miscarriage, although the exact reasons for this are uncertain. Some women, sadly, suffer recurrent miscarriages, defined as three or more miscarriages, and APS is thought to be the cause of this in around one out of every six cases.
Diagnosing APS can be difficult as some of the symptoms are similar to those of multiple sclerosis. Therefore, blood tests designed to help identify the antibodies responsible for APS are essential in diagnosing the condition. When a blood test is done, APS is easily distinguishable from MS at that point. On the difficulty around diagnosis generally, certainly in terms of how easily it can be picked up by a GP, my advice from NHS England is that, if a patient went to see their GP complaining of some of the low-grade symptoms of headache and fatigue, it is unlikely that APS would be something that the GP would immediately suspect and test for.
There is currently no cure for APS, as has been pointed out. However, if it is correctly diagnosed, the risk of developing blood clots can be greatly reduced. Anticoagulant medicines such as warfarin, or an antiplatelet such as low-dose aspirin, are usually prescribed. Treatment with these medications can also help pregnant women improve their chances of having a successful pregnancy. With treatment, it is estimated that there is about an 80% chance of a woman with APS having a successful pregnancy.
I turn to the specific issue the noble Baroness has raised—ensuring that the medical profession is sufficiently aware of APS. As I am sure noble Lords know, the content of GP training is decided by the medical royal colleges and approved by the General Medical Council. The noble Baroness suggested that GPs are not confident enough to recognise APS. I do not doubt that there have been cases where diagnosis of APS has been too slow, but I hope that she will agree that it is not possible to generalise in this area about the number of doctors who are alert to the condition.
The noble Baroness, Lady Morris, said that APS is not included in GP curricula. I understand that the Royal College of General Practitioners curriculum covers thromboembolic disease, which would include the understanding of predisposing factors for autoimmune conditions such as APS, so GPs should be sufficiently informed about the condition. NHS England assures me that APS is also widely recognised in general medicine, neurology, haematology and obstetrics. I also understand that the British Society for Haematology, the Royal College of Physicians and the Royal College of Obstetricians, provide guidance on how to manage APS.
I think that it was the noble Baroness, Lady Drake, who asked about the absence of NICE guidance on APS. In fact, NICE’s guideline on hypertension in pregnancy covers APS. Its document on reducing hypertension in pregnancy, published in August 2010, advises clinicians that women at high risk of pre-eclampsia, including women with APS, should take 75 milligrams of aspirin daily from 12 weeks of pregnancy until the birth of the baby. When the NICE guidelines on acute stroke and transient ischaemic attacks were in development, the inclusion of a management of APS was considered, but it was not taken forward as no studies were found that could form the basis of recommendations at that time. However, the 2016 edition of the Intercollegiate Stroke Working Party guidelines are currently in development, and NHS England’s national clinical director for stroke will discuss with the relevant clinical leads whether APS can be included.
The noble Lord, Lord Hunt, suggested that this was a problem that was down to a commissioning issue and that it should be for NHS England to have a uniform policy on blood testing. I differ from him in that I do not see this as a commissioning issue. It relies above all on doctors treating patients following the guidance that they are given.
I know that there are calls for screening for APS. In fact, UK testing for thrombophilia is offered on a selective basis during early pregnancy based on clinical risk factors, including previous foetal loss, still-birth, a history of pre-eclampsia and severe intrauterine growth retardation. However, as noble Lords may know, the UK National Screening Committee advises Ministers and the NHS in all four countries about all aspects of screening policy and supports implementation. The UK NSC reviewed the evidence for antenatal, newborn and adult screening for thrombophilia, including APS, in March 2010 and recommended that population screening should not be offered. Also, the UK NSC did not recommend antenatal screening. However, the UK NSC is due to review its recommendations on antenatal, newborn and adult thrombophilia screening this year. A public consultation will be held on the review and any stakeholders or individuals who would like input into the consultation should contact the UK NSC for a copy of the review’s timetable.
I understand all that the noble Baronesses said about the need to support women with APS who suffer miscarriages. We know that pregnancy is a time of huge emotional significance. Sadly, some pregnancies end in miscarriages. Families who have to cope with the distressing event of miscarriage need sensitive support and care from services and the people around them. That is precisely why the Royal College of Obstetricians and Gynaecologists has set out clear standards for NHS service organisations and levels of care that should be provided to help patients who experience problems in early pregnancy, miscarriage, ectopic pregnancy and recurrent miscarriages.
We still need to understand more about how APS affects people and how best to treat it. I am pleased to say that there is some research under way to help do just that. The National Institute for Health Research Clinical Research Network recently hosted a trial comparing the anti-coagulant effects of rivaroxaban and warfarin in patients with thrombotic APS. The trial closed to recruitment in November last year and is now in follow-up. In addition, the network has a new study in set-up that will look at the impact of fatigue and physical inactivity in people with APS.
I close by assuring noble Lords that this Government are determined to ensure that people with long-term conditions such as APS receive the help and support they need. I understand that noble Lords feel that gaps exist which should be bridged. I would be very happy to talk to the noble Baronesses, Lady Drake and Lady Morris, and the noble Lord, Lord Hunt, if they would like to come and see me about this. It is for this reason that through the mandate we have asked NHS England to make measurable progress in supporting people with ongoing health problems to live healthily and independently, with much better control over the care they receive. NHS England is taking action to make sure progress is made. For example, its business plan Putting Patients First sets out key actions to improve services for people with long-term conditions over the next two years. It has also recently published three handbooks to provide practical support for good management of long-term conditions and guidance on population risk-stratification. The aim is to help commissioners identify those patients who will benefit most from a personalised care planning approach. This, to be sure, is generic but I hope that it indicates the stress that we are putting on the importance of supporting those with long-term conditions, particularly those with multiple conditions.
In tandem with this, the Five Year Forward View, developed by the partner organisations that deliver and oversee health and care services, sets out that long-term conditions are now a central task of the NHS. Once again, I thank the noble Baroness for tabling this debate, which will help raise the profile of APS in a helpful way.