ME: Treatment and Research

Debate between Jim Shannon and Carol Monaghan

Thursday 21st June 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate. I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on advancing a comprehensive and compassionate case on behalf of ME sufferers and I congratulate her on encapsulating the issues so well. Her constituents will be very proud of her; she can be assured of that.

As someone who has had the opportunity to speak on behalf of ME sufferers over the years, before I came here in 2010, one frustration of my former life as a councillor and as a Member of the Northern Ireland Assembly was that if I put “ME” on a disability living allowance form, as it was then, that I was filling in for a constituent, and went to the GP and said, “I need a wee letter to support this person who has ME”, they would say, “They have what?”, and I would have to explain. That is in the past now, thank goodness, and I can honestly say that in the past few years there has been a better understanding from GPs and doctors in my constituency. They have come round from not understanding ME to understanding it, so when someone needs a form to be filled in, it is filled in right; if they need a support letter, that happens too. That is very important.

It was my pleasure to support the hon. Member for Glasgow North West at the Backbench Business Committee, so I wanted to make a contribution today.

[Carol Monaghan]

I should have paid tribute to all hon. Members who supported my application for the debate, and who came along to make representations to the Backbench Business Committee, like the hon. Gentleman. I see several of them present, and I thank them.

[Jim Shannon]

We are always very pleased to support the hon. Lady’s proposals to the Backbench Business Committee.

This is an emotive issue. Many constituents have contacted me in anger, frustration and hurt as they simply feel that their illness is not understood and that successive Governments and some in the Department of Health and Social Care have shown no desire to gain an understanding—I say that respectfully, and I understand that some might say that healthcare is devolved. That is not the case for everyone, but it is certainly how many of my constituents have said that they feel.

We are fortunate to have a Minister who has a deep interest in this subject matter. He is in deep conversation with his Parliamentary Private Secretary, the hon. Member for South Suffolk (James Cartlidge), at the moment, but I am sure he will turn round shortly and be aware of my contribution. I am sure that he will respond constructively.

I want to thank MEAction, Action for ME, the ME Association, the ME Trust, Blue Ribbon for the Awareness of ME, the Centre for Welfare Reform, Forward-ME, ME Research UK, the Welsh Association of ME and CFS Support and Hope 4 ME Fibro NI in particular. All those organisations—there are lots of them—have furnished us with lots of information, and I thank them. I particularly thank one constituent, Sally Burch, who ensured that I had all the details and information to help me. She comes to see me regularly and fills me in on all the details.

ME is a chronic fluctuating neurological condition that causes symptoms that physically affect many bodily systems, commonly the nervous and immune systems, and affects an estimated 250,000 adults and children in the UK, as other hon. Members have said—it is not just an illness in adults. Approximately 7,000 people in Northern Ireland and about 17 million people worldwide have ME.

Armed Forces Covenant: Northern Ireland

Debate between Jim Shannon and Carol Monaghan

Wednesday 7th March 2018 Commons Chamber

[Carol Monaghan (Glasgow North West) (SNP)]

I congratulate the right hon. Member for Lagan Valley (Sir Jeffrey M. Donaldson) on his passionate, knowledgeable speech, which kicked off this afternoon’s debate. I declare an interest: my husband was an officer in Her Majesty’s Royal Navy. I have mentioned that many times before, but I probably have not mentioned that he is an Ulsterman.

[Jim Shannon]

It took an Ulsterman to win her heart.

[Carol Monaghan]

He was a very special Ulsterman.

The armed forces covenant is a statement of the moral obligation that exists between the nations of the UK, the Government and the armed forces. It was enshrined in law for the first time in 2011. Specifically, it outlines two core principles. The first is that current or former members of the armed forces, or their families,

“should face no disadvantage compared to other citizens in the provision of public and commercial services.”

The second is that:

“Special consideration is appropriate in some cases, especially for…the injured and the bereaved.”

However, as the Armed Forces Act 2011 does not create legally enforceable rights for service personnel, across the UK it remains a statement of intent rather than a statement of action. It is a statement of intent to which members of the armed forces have no recourse, so we are letting service personnel down.

The right hon. Gentleman described the particular culture that prevents members of the armed forces and veterans in Northern Ireland from identifying themselves. I have experienced that personally when visiting Ulster with my husband and having to check under our car for devices, so I appreciate the situation we are talking about. The right hon. Gentleman described in some detail the fact that although many charities work with veterans in Northern Ireland, a lack of funding and a lack of transparency in some places with the veterans means there are serious issues. However, I believe this is part of a wider problem across the UK.

We welcome the progress that has been made with the new ministerial covenant and veterans board. In recent years, society has become far more aware and more understanding of the effects of military service on the health, mental and physical, of those who choose to serve, and on their relationships with their families and communities. However, it must be recognised that for veterans in Northern Ireland very particular circumstances apply, and for local councils to show reluctance to fully implement the armed forces covenant is simply letting these veterans down.

Veterans are an asset to society, and they deserve our thanks respect and support. In Scotland alone, every year approximately 1,800 men and women complete their military service and settle in our communities, many with their families. We have an ambition to make Scotland the destination of choice for service leavers and their families. For almost a decade, the Scottish Government’s Scottish veterans fund has made a real difference to the lives of the armed forces community in Scotland and has provided £1.1 million to a host of veterans and ex-service charities that offer advice, help and support. There is no doubt that that lead should be followed by other UK nations.

In Northern Ireland, there has been long-standing criticism of the lack of implementation of the armed forces covenant. We are of course all sensitive to the tensions that still exist in parts of Northern Ireland, particularly in respect of the Army, but that must not be used to avoid providing the service that personnel and veterans deserve and require. While I am talking about tensions, I wish to mention the outstanding work that has been done to break down barriers in respect of policing in Northern Ireland. The transition from the Royal Ulster Constabulary to the Police Service of Northern Ireland has enabled the police in Northern Ireland to have a more inclusive outlook and to be widely accepted in every sector of society.

Members of the republican nationalist community serve with distinction in the RAF and the Royal Navy. For some, though, the Army is still viewed with suspicion. A recruitment drive aimed at alienated communities would undoubtedly improve diversity and community representation in the Army. With movement on this issue, I believe that cross-party support for personnel and veterans would increase—that is, of course, if power-sharing is ever restored.

Much of this debate goes beyond Northern Ireland. What makes this issue infuriating is the voicelessness of personnel and veterans. We believe that personnel should be properly represented in the military and among defence policy decision makers. An armed forces representative body that is on a statutory footing is the norm for many other countries, including Ireland, the Netherlands and Germany. Such a representative body would give voice to our armed forces and would be able to liaise directly with the Government and ensure that personnel and veterans throughout the UK are central to defence thinking. That would be a major step forward for personnel across the UK and would give a much stronger voice to veterans in Northern Ireland.

The UK Government should honour the armed forces covenant tenet of “no disadvantage”. The covenant commits the UK Government to removing, where possible, disadvantage experienced as a result of service, and that includes for serving personnel and veterans in Northern Ireland.

--- Later in debate ---

[Jim Shannon]

I thank my right hon. Friend for his intervention. Again, perhaps the shadow Secretary of State will grasp the cold reality at some stage.

The hon. Member for Monmouth (David T. C. Davies) referred to the service of everyone in Northern Ireland, whether in an Army uniform, in a police uniform or in the prison service, and we thank him for that—I showed him a text earlier from one of my constituents commending him for doing so. The hon. Member for Glasgow North West (Carol Monaghan) found it took an Ulsterman to win her heart. We are pleased that that happened.

[Carol Monaghan]

May I point out to the hon. Gentleman that he was a rich Ulsterman?

[Jim Shannon]

He was rich the day he married the hon. Lady. That is what riches are—not money—but that is by the by. We thank her for her comments. She clearly outlined local councils’ reluctance in Northern Ireland to fully commit to and implement the military covenant. We are very aware of that, and she has quickly become aware of it as well. She referred to the transition of policing initiative and the principle that there be no disadvantage to service personnel.

The hon. Member for Moray (Douglas Ross) mentioned that councils in Scotland had brought in the military covenant—so the job’s done—and asked why the Northern Ireland councils could not support each other, as should be the case across all parts of the United Kingdom of Great Britain and Northern Ireland. My hon. Friend the Member for Upper Bann (David Simpson) referred to the scars. Sometimes we need to think for a minute sometimes about the scars, the pain and the hurt there has been. He expressed that extremely well in reminding us of the nation’s moral obligation towards those who sacrificed so much for all in the community. He also mentioned how Sinn Féin had disregarded this Parliament.

My hon. Friend the Member for South Antrim (Paul Girvan) mentioned how proud he was to stand up for veterans and how his own family had been part of that. He also reminded us of the commitment in the US of A to veterans and of those who have lost limbs and sustained life-changing injuries. We have been reminded today of what that means.

My hon. Friend the Member for Belfast South (Emma Little Pengelly) mentioned how many of her family members had committed themselves in uniform to liberty and freedom and how incredibly proud she was of the armed forces. She also told us that one third of people in Northern Ireland had either served or had family members who had served. It is good to remember that sometimes. The Army units in her constituency remind us not only of the commitment of the reservists, but of that of the NHS whose personnel are allowed to serve in the reserve forces. We should never forget that.

The hon. Member for Caithness, Sutherland and Easter Ross (Jamie Stone) had the good fortune to marry a girl from County Armagh.

PACE Trial: People with ME

Debate between Jim Shannon and Carol Monaghan

Tuesday 20th February 2018 Westminster Hall

[Carol Monaghan (Glasgow North West) (SNP)]

I beg to move,

That this House has considered the PACE trial and its effect on people with ME.

It is a pleasure to serve under your chairmanship, Mr Hollobone.

“The doctor doesn’t see me crawl on the floor. The doctor doesn’t know I don’t shower every day or brush my teeth twice a day like everyone else. He isn’t aware of my frequent sore throats, my poor balance, my difficulties with reading, my muscle twitches, or my sound intolerance, and he certainly wasn’t here to nurse me when once I was too weak to eat.”

Those are the words of a junior doctor living with ME, who alongside nearly 1,000 others has contacted me prior to this debate.

Myalgic encephalomyelitis, or ME, has been described in many ways, but labels such as chronic fatigue syndrome or post-viral fatigue syndrome simply do not come close to the living hell experienced by many ME sufferers—a hell that is made worse by the lack of understanding that is faced when seeking help.

ME is estimated to affect about 250,000 people in the UK and is classified by the World Health Organisation as a disease of the central nervous system. Symptoms can include debilitating muscle pain, severe headaches that are often made worse by light or noise, significant impairment of short-term memory and post-exertion malaise that can last days and even weeks.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on securing this debate. Does she agree that there is still huge concern among ME patients that the National Institute for Health and Care Excellence says it will not abandon the promotion of physio-social therapies for ME, despite the widespread scientific criticism of the PACE trial methodology, and that we must ensure that that is addressed as a matter of urgency?

[Carol Monaghan]

I thank the hon. Gentleman for his intervention. I will come on to the NICE guidelines later in my speech.

Although ME is a pathological, not psychological, condition, much about it remains a mystery. The reasons for that are twofold. First, many sufferers are housebound and therefore easy for society to ignore. Secondly, there is a lack of awareness among medical professionals and as a result a woeful lack of quality research. What we do know is that ME is often triggered by a viral infection such as flu, but, unlike healthy individuals, people living with ME do not recover. Into that research drought entered the PACE trial—pacing, graded activity and cognitive behaviour therapy; a randomised evaluation.

The trial was unique in medical research. It was funded by the Department for Work and Pensions to the tune of £5 million, a point to which I will return. From the very start the PACE trial was flawed. In contravention of the World Health Organisation classification, it assumed that ME was psychological and sufferers could recover if they chose so to do. Thus the PACE trial was framed in psychological terms.