Appropriate ME Treatment

Adrian Bailey Excerpts

Thursday 24th January 2019 Commons Chamber

[Mr Adrian Bailey (West Bromwich West) (Lab/Co-op)]

I thank and congratulate the hon. Member for Glasgow North West (Carol Monaghan) on her commendable perseverance in pursuing this matter. Like others, I have been approached by constituents to discuss ME, which caused me to dredge my memory and recall individuals whom I have known personally who have suffered from this illness. From my conversations with sufferers, I know that they have been confronted with a range of problems that still exist for others today. Those problems include: a lack of understanding and support in the workplace and in schools, which can mean a loss of job opportunities or problems for the parents of young pupils; inadequate understanding by clinicians; delays in diagnosis and, indeed, inappropriate treatments and tests; incomprehension and insensitivity by the DUP for recipients of benefits, which can lead to a loss of benefits. [Interruption.] Sorry, I mean the DWP. A Freudian slip. I do not blame the hon. Member for Strangford (Jim Shannon) for that particular problem.

The loss of those benefits can lead to a loss of income, leading to life challenges over and above the problems such people confront because of their illness. Over and above all that, there is the stigma of mental or psychological problems, which can reinforce the sense of social isolation. It is amazing that, despite the debates we have had on this subject and despite our world-class NHS and top-class medical research, these problems have not been addressed.

Like many people, I have personal examples from those who have had their life devastated by this illness. Lucy, a vivacious young political activist I know, was heading for an early parliamentary career before she was struck down. She found that she could manage to work only 10 hours a week, and describes how every speech and every meeting is absolutely devastating to her body. She describes it as remaining awake while her body sleeps. She went to the doctor, and even different doctors within the same medical practice gave different diagnoses, which demonstrates the unbelievable lack of comprehension of this illness.

I would have liked to give many more examples, but I finish by saying that, in summing up last June’s Westminster Hall debate, the Minister spoke about channelling research, but the problem is that it seems to be going towards psychological research, rather than neurological research. He also said that the NICE draft consultation will be ready in 2020. Why the wait, given our knowledge of the scale of these problems? He said that he would follow up with the DWP on the problems there, and I hope he can report on that.

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[The Parliamentary Under-Secretary of State for Health and Social Care (Steve Brine)]

The two-minute limit produced an impressive result, showing what can be done in the Chamber, but let me issue a plea to the Backbench Business Committee. I know it is unusual for Ministers to make comments like this, but I reckon that sometimes doing less and doing it better is preferable to trying to squeeze two really important debates into a very short space of time. Perhaps the Committee will listen to my plea.

I thank those who have contributed to the debate, including my hon. Friend the Member for Southend West (Sir David Amess), the hon. Member for West Bromwich West (Mr Bailey), my right hon. Friend the Member for Loughborough (Nicky Morgan), the hon. Member for South Shields (Mrs Lewell-Buck), my hon. Friend the Member for Torbay (Kevin Foster), the hon. Member for Stroud (Dr Drew), my hon. Friend the Member for Stirling (Stephen Kerr), the hon. Member for Luton North (Kelvin Hopkins), the hon. Member for Ealing North (Stephen Pound), who spoke in his usual style, the hon. Member for Lincoln (Karen Lee), the hon. Member for Ceredigion (Ben Lake), the hon. Member for Blaydon (Liz Twist), the hon. Member for Torfaen (Nick Thomas-Symonds), the hon. Member for Heywood and Middleton (Liz McInnes), whom I have heard mention her constituent before, the hon. Member for North Ayrshire and Arran (Patricia Gibson), the hon. Member for Bristol North West (Darren Jones), who I thought gave the best speech—the prize goes to him—and the hon. Member for Bedford (Mohammad Yasin).

I also, of course, thank the hon. Member for Glasgow North West (Carol Monaghan) for introducing the debate. I think I am right in saying that this is the third debate on this subject that she has tabled and been granted in the last 12 months. I applaud her dedication, and her passion for ensuring that awareness of ME is kept very high. I echo the thanks given by the hon. Member for Washington and Sunderland West (Mrs Hodgson) to all the charities that are working in this space, and I welcome the ladies from the Millions Missing campaign who are in the Public Gallery. I thank them for coming to listen to our debate; I am sorry that it has been so rushed.

The Government do not for one minute underestimate ME. As we heard from the hon. Member for Central Ayrshire (Dr Whitford), the truth is that we do not understand the underlying causes, and there is no single diagnostic test to identify it. Although some patients—very few—improve and recover, there is currently no cure. We know that the condition has a devastating impact, and we have heard some stories about that today. It has a complex range of symptoms which cause great difficulties for physicians, including disabling fatigue, a flu-like malaise and neurological problems. We have also heard about the effect on families, friends, carers, schools and housing.

No one mentioned the powerful film “Unrest” today, so let me mention it briefly in passing. It won an award at the Sundance film festival a couple of years ago. That was a powerful presentation, if ever I saw one, of the impact that ME can have on people’s lives. I will not say any more about it, because last time I did so someone accused me of doing a film review instead of responding to the debate—which I think was slightly harsh, but that is what social media does for you. I thought that the hon. Member for Ceredigion, who is still in the Chamber, put it very well: although we give constituents’ stories in this place, we cannot for one minute begin to understand what it must be like to suffer from this condition. Those who have seen the film will know that it literally puts people flat on their backs, sometimes for years.

We have heard a lot about the medical profession today, and I think—the hon. Member for Central Ayrshire touched on this—that the profession has had a bad rap, some of it deserved. As we have heard, the difficulties in diagnosis mean that patients with ME often experience great delays in receiving the treatment and support that they require. Recognising the need for GPs to be aware of the condition, the Royal College of General Practitioners includes it as a vital area of clinical knowledge that GPs should have as part of their qualifying exams, featuring it in the guidance for the applied knowledge test, which is a key part of those exams.

The RCGP has also produced an online course on ME for GPs. It highlights many of the common misconceptions, and considers the challenges for primary care professionals that surround this complex condition. Nevertheless, once they are qualified, clinicians are responsible for ensuring that their own clinical knowledge remains up to date—it is not for Ministers to go on educating GPs; that is one of the jobs of the RCGP—and for their ongoing learning. I made clear in the last debate, and I will make clear again, that that activity should continue, and should take into account new research and developments in guidance such as that produced and updated by the National Institute for Health and Care Excellence.

My hon. Friend the Member for Southend West said that people felt that they had been fobbed off. They should never be fobbed off by the medical profession, and I should be very concerned to hear of any examples of that.

[Mr Bailey]

Will the Minister give way?

[Steve Brine]

No, I will not, because everyone had a chance to speak and wanted the Minister to respond.

As I have said, I think that GPs have had a hard rap this afternoon. Before the debate I spoke to Helen Stokes-Lampard, who chairs the RCGP, because I anticipated that that would happen. I asked her whether she would be willing to come to the House if I were to facilitate a roundtable—perhaps involving the all-party parliamentary group on myalgic encephalomyelitis, which we hope will be reconstituted, but certainly involving the sponsors of today’s debate. She is very willing to do that, and I think it would be a positive development. If the hon. Member for Glasgow North West would like to be part of that, perhaps we can get in touch and make it happen. The door will be open.

The NICE guidance is clear on a number of important points. There is no one form of treatment to suit every patient; that is self-evident. The needs and preferences of patients should absolutely be taken into account. Doctors should explain that no single strategy will be successful for all patients, which is a hallmark of this condition. In common with people receiving any NHS care, ME patients have the absolute right to refuse or withdraw from any part of their treatment; nobody is making this happen. Those with severe symptoms may require access to a wider range of support, managed by a specialist.

NICE guidance supports commissioners to plan, fund and deliver ME services. As we have heard in this debate, and in others secured by the hon. Member for Glasgow North West, the use of CBT and GET in treating ME has long been controversial for patient groups, charities and some clinicians, who are very divided on this condition—understatement of the afternoon, perhaps. That began with the publication of the NICE guidance in 2007, and continued with the PACE trial. However, as Members clearly, from what I have heard this afternoon, know, NICE is updating the ME guidance and will examine the concerns about the PACE trial and whether there are implications for its current recommendations.

The updated guidance is due, but sadly not until October next year, and until then the existing guidance will remain current. I will look into the request made by the hon. Lady and others for an early statement from NICE, but NICE is an internationally respected independent organisation; if we did not have NICE, we would have to invent it. The time allotted for the development of the new guidance will allow all the evidence to be considered and all the voices to be heard, and I am determined to make sure that happens.

I think every single speaker—I have a list here of who spoke and what they said—mentioned research. As set out in previous debates, the Government invest £1.7 billion a year in health research via the National Institute for Health Research and the MRC through UK Research and Innovation. Together, the NIHR and MRC welcome high-quality applications for research into all aspects of ME, which would absolutely include biomedical research. The MRC has had a cross-board highlight notice on ME open since 2003, updated in 2011, inviting innovative research proposals, alongside a bespoke funding call in that year.

ME research remains an area of very high strategic importance for the MRC. I do not have time to go into all the money granted. Members have said this afternoon, “We must surely fund more research,” but Ministers do not sit in the Department of Health and Social Care and decide on what to do research. One of the great legacies of the late Baroness Jowell was that she understood in brain tumour research that we need to stimulate that research community to come forward with the best research proposals that then can be successful in bidding for funding. The truth is—sometimes it is a hard and inconvenient truth to hear—there have not been good enough research proposals in the ME space, partly because of the stigma—a point raised very well by the hon. Member for Lincoln; she looks delighted that I have mentioned her—and partly because of the division in the medical community. We need people to come forward with good research proposals in this space; that can only be advantageous.

I want to give the hon. Member for Glasgow North West a chance to conclude, but I thank her for raising the issue again on behalf of those affected, including many of my constituents who have contacted me asking if I would be able to attend today’s debate; I was able to say, “Yeah, there’s a fairly good chance that I will pop in.” One of the Whips present on the Treasury Bench, my hon. Friend the Member for Bury St Edmunds (Jo Churchill), asked me to mention her constituent, Rosalind Amor, who has been in touch with her many times on this subject.

The Government fully recognise the strength of feeling on this issue, as we do for all those living with conditions and disorders which research is unable yet to help us fully understand. That is why we remain fully committed to delivering significant investment in our research programmes and infrastructure, but we need people to come forward with quality proposals.