NHS: Antiphospholipid Syndrome (APS)

Lord Hunt of Kings Heath Excerpts

Monday 9th March 2015 Lords Chamber

[Lord Hunt of Kings Heath (Lab)]

My Lords, I am very grateful to my noble friend Lady Drake for securing this debate and for her forceful speech. My noble friend Lady Morris also made a very powerful case, asking the Government to look at how they will support the improvements that have been spoken about so eloquently tonight.

I acknowledge the work of the Hughes Syndrome Foundation. Its fact sheets were excellent in getting across to me the scale of the issue that we face. I am very glad to hear that it will be circulating more leaflets to GPs in the near future.

We have heard that, if untreated, APS can lead to permanent disability, severe maternal or perinatal morbidity or even death; that symptoms can occur in virtually all organ systems; that venous thrombosis and stroke are the most common thrombotic manifestations; and that in pregnancy the syndrome is associated with adverse maternal and foetal outcomes. The problem is that the syndrome is underrecognised and underdiagnosed and can have, as we have heard, devastating consequences if untreated, mainly because of uncontrolled thrombosis.

Just to go over the ground already covered, these difficulties in diagnosis are compounded by a lack of standardisation of diagnostic tests. As we have heard, early recognition is crucial because treatment can reduce mortality or morbidity in relatively young people who often present with diseases such as stroke, myocardial infarction and deep-vein thrombosis. The example that my noble friend Lady Drake cited, of Mrs A, was very telling about some of the issues that can arise if there is not early diagnosis.

The first issue is, as my noble friend said, the need for a high-quality study of prevalence. My noble friend Lady Morris said that this is not a rare condition, but at the moment there is insufficient information to quantify just how common it is. It would be right for the Government to ensure that a robust study is now carried out to look at the prevalence of this disease.

I come to the simple blood test. What is so striking is that if it is simply left to individual hospitals or clinical commissioning groups—if they ever touch this area, which I doubt—we will not get consistency of approach and the uniform use of blood tests, which the evidence clearly points out that we need. If that is the case—if the noble Earl agrees with me—it is down to the Government or NHS England to start to signal to the NHS that we need to see a uniform policy on these tests.

I do not know whether the noble Earl read the piece in the Telegraph a couple of weeks ago in which there was an interview with Professor Hughes, the pioneering doctor who, with his team, found the evidence for Hughes syndrome many years ago. In that interview, he spoke about areas such as neurology and cardiovascular medicine, where there was less awareness among doctors of APS. He was quoted as saying:

“We know that it is present in one in five men aged under 45 who have a stroke, and one in five women aged under 35 who have a heart attack. Yet, it is simply not being picked up early enough to prevent these illnesses. Because the symptoms can be subtle, patients do get sent round the houses”.

The question therefore arises: given that the cost of the blood test would be a matter of a few pounds, why do we not ensure that those tests take place uniformly within the National Health Service?

We then come to general practitioners and the issue of training and raising awareness among them. In this Parliament, the noble Earl has debated many specific disease areas where issues have been raised about GPs recognising and diagnosing conditions that may not be rare but which they are not used to or do not recognise. One could approach that in a piecemeal way. However, given the pressure on GPs, and given that we know that the curriculum at medical school is very crowded, some other mechanism is needed to help general practitioners understand and recognise illnesses that are not common in the accepted sense of the term but which can have a major impact on many patients. The Government need to think very carefully with the profession, and in particular with GPs, about how we can improve their diagnosis success.

My noble friend said that there are no NICE guidelines and no national service framework. It would be very helpful if the noble Earl agreed that either his department or NHS England would set out what they consider to be the appropriate response of the NHS, as regards diagnosis of testing and treatment, so that we get a much more consistent approach. My noble friend Lady Morris said that investing in such a set of guidelines, including the testing, would be cost-effective. Of course, this syndrome was discovered in the UK by a fantastic British team. It would be ironic if this country, of all countries, was not then able to take advantage of the work that was developed in the UK. The noble Earl will know that, unfortunately, this is not unique in that respect. However, I hope he might be able to agree that something more needs to be done to get a cohesive national response.

The noble Earl has been very generous with his time, but perhaps he might be prepared to meet my noble friend, and perhaps the Hughes Syndrome Foundation, in the very short time remaining before we prorogue, to discuss whether the Government will be able to help in the way my noble friends have suggested.