ME: Treatment and Research

Debate between Steve Brine and Stephen Pound

Thursday 21st June 2018 Westminster Hall

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

I shall start where everyone else has started and thank the hon. Member for Glasgow North West (Carol Monaghan), who secured this important debate, very much. She did so along with my right hon. Friend the Member for Loughborough (Nicky Morgan), who has to be in her constituency today to deal with a royal visit—lucky her.

Raising awareness of this debilitating condition is critical, and the hon. Member for Glasgow North West has undertaken significant work in this area over a number of years. Thirteen—lucky for us—Back Benchers spoke in today’s debate. I counted 25 Members present at our peak, which is excellent. I spend a lot of time with the hon. Member for Strangford (Jim Shannon) in Westminster Hall, it must be said, but that is a lot of MPs for a Tuesday afternoon, let alone a Thursday afternoon, so that is excellent.

As we have heard, ME, otherwise known as chronic fatigue syndrome, is an incapacitating condition with a plethora of symptoms, primarily characterised by long-term fatigue, chronic pain and post-exertional symptoms of malaise, to name but a few. There are many more and we have heard some excellent testimony of those from Members on behalf of their constituents.

As so many have said, the underlying causes of the condition, which for brevity I will call ME, are still poorly understood. There is no one diagnostic test to identify it, and although some people can and do improve and recover, there is currently no cure. That is a hard reality to face. Although the severity of symptoms and therefore the impact vary, ME can lead to poor attendance and affect outcomes at school for young people. I have a constituent in exactly that position with whom I am in regular correspondence—I will not name her but she knows who she is and I wish her and her mum well. ME can result in significant or indefinite time off work or job loss in adults; reduction or complete cessation of daily activities, which can lead to isolation and strain within families and the breakdown of marriages; and overall poor quality of life. As my hon. Friend the Member for Stirling (Stephen Kerr) said, it can lead to almost no life for some people and their loved ones.

I am surprised that other than the hon. Member for Bristol East (Kerry McCarthy), nobody mentioned “Unrest”. I know it well. Some constituents came to see me to tell me about the film. It had screenings in Winchester and Chandler’s Ford in my constituency, which were oversubscribed—packed to the gunwales—and there was not a dry eye in the house. I pay great tribute to Jennifer and her partner Omar who made that film. I am sure there were times when it gave Jennifer’s life a great purpose, but I am sure there were times when she wanted to say, “Get that bleeping camera out of my life!” There is a touching moment at the very start of the film when she says that when she was a young girl, she want to eat the world “whole”, because she wanted to see it all and do it all. That went to the heart of her great disappointment that she was so sick.

Jennifer set out very clearly and movingly the sheer ups and downs of this condition. For some, it is almost a constant down. I was struck by watching her at the Princeton University reunion day, during the rather surreal procession through the streets by old boys and girls from Princeton. She so enjoyed seeing old friends that day and looked full of life, but within an hour of it finishing she was absolutely poleaxed on the floor, saying that she felt her eyes were being pushed out of her head from the inside. It was horrible to watch.

It was interesting how the film moved around the different wild and crazy treatments that are out there on the internet. If hon. Members google any condition, they will see lots of wild and crazy treatments, but that is particularly the case with ME. One of the saddest things in it, although it covered it well, was the point that my hon. Friend the Member for Cheltenham (Alex Chalk) raised of the suicides resulting from this condition.

Millions Missing was mentioned by many Members, and I see some people wearing T-shirts in the Public Gallery. The hon. Member for Ealing North (Stephen Pound) is right that it has had some bad PR, but it is getting its act together. Millions Missing is an absolutely brilliant way of encapsulating the problem. A number of Members mentioned the shoes; I was particularly moved by the messages on the shoes. They were outside Richmond House, where the Department of Health used to be, as part of the Millions Missing campaign. The mission was to write what you miss; somebody had written on a pair of ballet shoes, “I miss dancing in these shoes.” That was really moving and a human way of putting it. I might touch on the film again a little later.

[Stephen Pound]

I assure the hon. Gentleman that I was not implying any absence of PR skills on the part of the advocates and the people who suffer from this debilitating disease; I was anthropomorphising the actual disease itself. I stole the words of the hon. Member for Cheltenham (Alex Chalk) when we pitched this debate to the Backbench Business Committee, because he was not in Westminster Hall at the time.

[Steve Brine]

That is so unlike the hon. Gentleman. Good clarification.

The stigma quite rightly has been mentioned by pretty much everyone who have spoken today. We recognise that people with ME have encountered significant stigma, in part due to the unfavourable media representations of the condition that not only go back to the 1980s but have continued in recent times. I have seen a clip of Ricky Gervais in one of his otherwise amusing stage shows, when he says of ME, “Yes, that’s the one where they say I don’t want to go to work today.” Ricky Gervais is a very talented comic, but given that he is quite active on Twitter, perhaps he could retract that and apologise to the ME community today. Perhaps he could put #ME so we can look out for it.

My right hon. Friend the Member for New Forest West (Sir Desmond Swayne) made a very good point about mental health; it is totally wrong and insulting to say it is all in the head, but it also goes against the grain of what we are talking about in modern-day healthcare: the parity between mental and physical health. There must be a parity, and to suggest that that somehow lessens it is wrong. His intervention was timely and good.

The physical impacts of the condition have an impact on mental health, as other hon. Members have said. I am also the Minister with responsibility for cancer, so I speak in lots of debates in Westminster Hall and we talk about the mental health impact of cancer—the hon. Member for Washington and Sunderland West (Mrs Hodgson) knows all about them. A recent example was when we talked about the mental impact of blood cancer. People with ME often report that the legitimacy of their symptoms has been questioned by family, friends, employers, healthcare professionals—yes—and society as a whole. Lest hon. Members did not understand it from my opening remarks, let me clear that Ministers—especially this one—are not among that group of people.

That stigma can and does play a part in the development of the co-morbid symptoms of depression and anxiety, particularly for young people—I will come on to them in a minute—who keenly feel the consequences of the resultant social isolation at that moment of their development. As we have heard, suicide is not unheard of. We know that those who experience stigma often also experience discrimination, which has a profound negative effect on their lives. That is unacceptable, so I welcome the debate as a forum to raise awareness of ME and talking about it. The hon. Member for Plymouth, Sutton and Devonport (Luke Pollard) mentioned that MND is being talked about, and he is absolutely right. He is a very good communicator, and I think this will probably be one of his next Facebook Live sessions.

National Health Service

Debate between Steve Brine and Stephen Pound

Wednesday 26th October 2011 Commons Chamber

[Stephen Pound (Ealing North) (Lab)]

There are few areas of our work in this House that may be described, honestly and without hysteria, as matters of life and death. The national health service is so utterly central to our existence, our future and the hopes of our country that it is no surprise that the emotions it engenders are as strong as those that have been witnessed on the Floor of the House this afternoon.

I have to tell the Secretary of State that he has a problem. He is a man of great charm, he is widely liked and he is popular, yet he has not sealed the deal on his disintegration, disaggregation and atomisation of the national health service. He has not been able to persuade the Royal College of General Practitioners, which tells us that three quarters of its members oppose it. He has not been able to persuade Professor Malcolm Grant, his own choice to run the commissioning board, who describes the plan as “completely unintelligible”. The Secretary of State wishes to persuade the nation that it is appropriate, at this time of all times, to spend about £3 billion on reorganisation—money that could be far better spent dealing with the dental abscess of the hon. Member for Southport (John Pugh) and all the other problems that face us.

The hon. Member for Truro and Falmouth (Sarah Newton) spoke for many in the House when she prayed for a depoliticisation of this issue. The reality is that the national health service was born amid the gun smoke of political opposition; it was born opposed entirely by one political party in this House and supported by another. Of the supporters—

[Mr Brine]

rose—

[Stephen Pound]

Hold on a moment, I am just having a rant.

Of the supporters, let us give credit—because there once was a time when we could give credit to a decent, humane, sensible, consistent bunch of men and women—to the Liberals of those days and to Beveridge for the work that he did. Above all, let us never forget the transcendent genius of a south Wales miner’s son who left school at the age of 14, Aneurin Bevan, who gave us our national—I emphasise “national”—health service.

[Mr Brine]

I apologise profusely for interrupting a rant that I was enjoying. While we are on the subject of opposition to the conception of the national health service, can we place on record the fact that the British Medical Association also opposed it?

[Stephen Pound]

May I thank the hon. Gentleman? I do not know how anyone persuaded him to bowl me that patsy ball that I can immediately crack to the boundary. He is absolutely right. Dr Hill, the radio doctor, opposed the national health service. Aneurin Bevan said that he had had to

“stuff their mouths with gold”.

Of course the producer interest opposed the beginning of the national health service because it was about the consumers—that was its major difference. Of course the vested interests opposed the creation of the national health service—that is no surprise. But that was then.

The national health service was born in compromise. I was born in July 1948, as was the NHS. For many years I was suspected to have been the first child ever born on the NHS, in Queen Charlotte’s hospital, but somebody in Salford beat me to it.