Fibrodysplasia Ossificans Progressiva

Debate between Jim Shannon and Mike Penning

Thursday 7th September 2023 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to follow the right hon. Member for Hemel Hempstead (Sir Mike Penning) and the hon. Member for Blaydon (Liz Twist). I thank them for their contributions, particularly the right hon. Gentleman for setting the scene.

FOP is an extremely rare condition, but it is important that the matter is aired in the Chamber and the right hon. Gentleman has done that well. He is probably right that the relevant Minister is not here. That is no disrespect to the Minister who is here—we know that he is an honourable person, who will respond positively within his remit. If another Minister needs to take the matter on board, we look to the Minister who is here to make the case persuasively to them, and hopefully we will get a response.

When the right hon. Member for Hemel Hempstead asked me whether I would come along to support him, I automatically said that I would, because the debate is about a health issue, health is one of my portfolios and I wanted to understand the condition. I have always had a particular interest in rare diseases. Long before I came here, I was a member of the Northern Ireland association for rare diseases. I am therefore particularly interested in the subject.

I will be honest: I knew little about FOP. I had to research it, and the right hon. Member for Hemel Hempstead gave me some pointers. It was so interesting to read about it and to learn how rare it is and how little we know about it. FOP is an exceptionally rare genetic condition, where soft tissue develops into bone, creating a second skeleton. The right hon. Gentleman illustrated the condition clearly when he described the bruise, the bump, the jag or the discomfort. Around 70 known individuals are diagnosed in the UK, and the disorder has been described as impacting “one in a million.” That gives an idea of the rarity of the condition.

The House is tasked with highlighting the issue and raising awareness, and I hope that the debate will do that. As far as I am aware, there are only two known cases in Northern Ireland, and they are twin sisters. I do not have their permission to name them, and I would not do that, but there has been public information about the case.

[Sir Mike Penning]

My hon. Friend has touched on the really important point of the lack of diagnosis. If we know that one in a million children will be born with it, the calculation for the world population is pretty obvious. We are nowhere near identifying the numbers that should be out there. In my constituency and in any other hon. Member’s constituency, there are probably children who have been born with the condition. However, the length of time it takes to get a diagnosis—because the test is not part of the programme—is the most important thing. The condition can be tested for if there is a will.

[Jim Shannon]

The right hon. Gentleman has made a simple request about diagnosis. Perhaps awareness can be raised of the simple test, which it is so important to do. I understand that the twins in Northern Ireland are rightly keen to raise awareness of the issue.

Such rare diseases are often ignored. Most people—including me before this debate—have little or no idea what it is or, more importantly, what we can do to raise awareness. But today we can use our position as MPs to highlight the issue, with the co-operation of the Minister and the shadow Minister. I cannot for a moment imagine what it must be like to grow up with a condition about which there is little or no information, not to mention what it would have been like when the twins were children, when there was no cure or treatment for the condition.

Early and correct diagnosis is key to changing the life of someone suffering with FOP, as the right hon. Gentleman said. This debate is a request for hope and for progress for our constituents. The purpose of this debate is funding, with the hope of a potential trial of the existing drug Saracatinib, originally developed by AstraZeneza as a cancer drug. The underlying issue is that if the STOPFOP trial is not completed, the money spent on it will be wasted. Given the progress of trials and the advancement in medication, it is right that every effort should be made to try to find that money to ensure that the investigation into that treatment takes place.

[Sir Mike Penning]

Like all clinical trials and all things in health, there are other things the trial could help with. I am not a scientist, but it has been put to me that while we are looking at clinical trials into FOP, there may be help for osteoporosis—brittle bones—and skeletal damage, particularly that suffered by the military. Even though we are talking about a tiny percentage of the population with FOP, the population with brittle bones is huge. It seems that there is very little cure for it apart from taking calcium tablets. If we get the principle right on what is causing the bone growth, perhaps the research can be extended past FOP and we can help millions of people in other areas.

[Jim Shannon]

The right hon. Gentleman is absolutely right. Whenever trials take place there are always benefits, although perhaps not the intended ones. None the less, the focus can be larger, whether it be brittle bones or whatever. What was originally a cancer drug has been found to be beneficial to those with FOP.

As initial funding for the trial is running out, the main asks are to ensure that additional funding is allocated, while ensuring that secured funding extends to allow the trial to include children, especially the screening of new-born infants—as the right hon. Gentleman has referred to. Many have said that early and correct diagnosis is key to changing the life of someone with FOP, so I cannot imagine how the trial could not extend to newborns and extremely young children.

Raising awareness is how we will improve treatment for the condition. I have been made aware that there are only three knowledgeable FOP clinicians in the whole of the United Kingdom of Great Britain and Northern Ireland. That leaves patients often finding themselves treated by doctors with little or no FOP knowledge, which is rather disappointing, but focuses attention on those three clinicians. Like other conditions, patients must battle to be heard. Being aware of what to look out for is crucial: shortened or turned-out toes in young children raise concern, but if combined with tumour-like swellings, FOP is almost certain. It has also been raised that many patients are given biopsies and misdiagnosed with cancer. Others have had limb amputations, which perhaps was not the right way forward, but a response to not being quite sure what the problem is.

Having better access to a wider pool of experts would make a huge difference in diagnosing and treating people correctly. The charity FOP Friends, based in Oxford, is fantastic at supporting families. I have also seen some of the social media pages of parents of children who have FOP. Their work is absolutely incredible.

--- Later in debate ---

[Sir Mike Penning]

I thank the hon. Gentleman for giving way—thank goodness we have plenty of time to debate this issue. As he alluded to, there was a petition on social media, which was signed by well over 100,000 people. The Government’s response—I should have mentioned this to the Minister—is that they have funded research into FOP, but I am afraid that does not appear to be the case. They have funded research into rare diseases, not FOP. That is probably crucial when it comes to the public’s belief in what we do in this place.

[Jim Shannon]

The Minister took note of what the right hon. Gentleman said, so I have no doubt that there will be a response. The Minister has a genuine interest in the subject and I hope we will all be encouraged by what will have been said.

The parents are the main drivers of the campaign and the effort going into it is truly incredible. Many different people are making an effort with FOP Friends, whether the families, clinicians, those involved in clinical trials, ourselves as Members of Parliament, and, ultimately, the shadow Minister and the Minister.

To conclude, I thank the right hon. Member for Hemel Hempstead again for raising this issue with us today. He speaks so highly of his constituents. He does it all the time, by the way, but he did it again today. He has indicated to me that he is not running for Parliament again. We will miss his constant and compassionate commitment, interventions and speeches in this Chamber. He does not always do what his party wants him to do, but he always does what is right and that is what I admire about him as an individual.

It is important that we do all we can to help those with this condition to cope. We must do more to fund research into this trial. I sincerely look forward to hearing about developments in the future. To give those with FOP a better quality of life just like the rest of us, we need the Government and the Minister, from whatever Department, to help deliver just that.

Accountability in the NHS

Debate between Jim Shannon and Mike Penning

Wednesday 30th November 2022 Westminster Hall

[Sir Mike Penning]

I thank the hon. Member for his intervention. We have seen during covid that, actually, when things get really bad, Ministers can step in and Prime Ministers can step in, but when we talk about individual cases, they cannot.

In the case I am referring to, I ended up writing to the Minister, to be told to go to the ombudsman. I got fobbed off by the ombudsman, after we had been to the trust three or four times. I then wrote to the Minister again—this is over the course of years—to be told to take legal advice. This particular person has now been told, “Go back to your GP and get them to re-refer you if you’ve still got problems.” He has problems because they did not do the operation properly in the first place, and it has had a massive long-term effect on this gentleman’s quality of life.

That is not the only case. I have been here for nearly 18 years, and I worked for a Member of Parliament for many years before that. In every constituency, this sort of case is brought before the MP. I have another example. Last summer, in the middle of heatwave in July, when the temperatures were unbelievably high, a very vulnerable young lady was brought in for a scan at my local hospital. She is the most vulnerable young lady. Her mother cares for her 24/7. She has carers in. She is a wheelchair user or bed-bound. She was left on a trolley in the heat for five hours when her ambulance did not arrive.

When I contacted the trust and said, “What happened there?” it blamed the ambulance trust. When I contacted the ambulance trust, it said, “No, it was cancelled by the trust—it was their fault.” I do not care whose fault it was. It was the NHS’s fault that this happened to a very vulnerable young lady. She had no drink and no food. She was very, very ill. The ambulance trust said that the return journey was cancelled because she was so poorly on the trolley—well, she was so poorly because she had been left there for five hours!

Trying to get to the bottom of what happens within the NHS when something goes wrong is so difficult. We have seen terrible situations in maternity services and in trusts around the country. These problems need to be addressed early on, instead of the drawbridge being brought up and people having to go through a massive complaints procedure where they have to complain three times before going to the ombudsman, and then the ombudsman will say it is out of time, and if they are not careful, they cannot go to court because that is out of time too. Is that the way we want our NHS to be seen by the public, who love the NHS?

The NHS sees the NHS as a single entity. As MPs—and I was a shadow Health Minister for four and a half years—we understand that it is not a single entity. It is a set of silos where everybody passes the buck back and forth. What we need is joined-up thinking. When Members like myself write to Ministers about these issues, the answer is not to say, “Nothing to do with me, guv” and pass it down the line to the ombudsman or a lawyer. That surely costs more money and does not put the NHS in a particularly good light with my constituents who have had their operations botched

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Gentleman on securing the debate. He talks about silos, and I want to give him an example of that in my constituency. Many people await their care packages in order to be released from hospital and get better at home. On the other hand, there are people waiting urgently for hospital beds who cannot get one. Does he agree that there must be greater communication between trust managers and social care workers to ensure efficiency of care in the community, which would free up hospital beds and allow people to be treated quicker? In other words, we should do away with the silos and get things co-ordinated.

[Sir Mike Penning]

I completely agree with the hon. Gentleman. I know that right next to my constituency, my hon. Friend the Member for Watford (Dean Russell) goes to Watford General Hospital and looks at the boards to see whether people can medically be discharged, but they cannot because there is a lack of joined-up thinking.

This is different. This is about the need for the NHS, when it may or may not have made a mistake, to address it full-on at the start. It should not draw up the drawbridge, with people having to go through the long, drawn-out procedure of making complaints and going to the ombudsman. For a Minister to say to a colleague and fellow MP, “Perhaps this person needs to take legal advice,” is not the attitude we should have towards people who have done the right thing. The NHS has said that they should have an operation, and the NHS has mucked up and botched—I use that word under privilege. At the same time, the person’s life has been detrimentally affected for years and years to come.

I know the Minister is not the Minister responsible, but because we are all constituency MPs, I guarantee that before he was in his position, people were at his surgeries or wrote to him to say, “This happened to me within the NHS. What can you do to help me do something about it?” Somewhere along the line, perhaps the short debate we are having today will nudge the Department of Health and Social Care and the Government —I was a Minister in several Departments—to look at ministerial oversight.

Northern Ireland Troubles (Legacy and Reconciliation) Bill

Debate between Jim Shannon and Mike Penning

2nd reading
Tuesday 24th May 2022 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate; I thought the hon. Member for Belfast South (Claire Hanna) was going to get in ahead of me there. I would have been pleased if she had, by the way, but today it will be the other way around.

First, I declare an interest as a former member, for three years, of the Ulster Defence Regiment and of the Territorial Army for 11 and a half years—14 and a half years in total. I believe that this Bill is very important. I have a number of issues with its details, such as the fact that clause 37 appears to allow cases already in the pipeline, such as current cases against soldiers and others, to continue. That defeats the supposed purpose of the Bill. It means that any investigations being undertaken need only the Public Prosecution Service to signal an intent to charge and they will be exempt. I am anxious to understand how that would stop a repeat of what happened with Soldier F through a case that could already be in the system.

I have issues with the detail, such as the fact that general and specific immunity are not explained fully and would appear to lend themselves to other uses. I have problems with other details of the Bill; my hon. Friend the Member for Belfast East (Gavin Robinson), as we have come to expect, queried and posed the questions with a greater ability than mine.

The right hon. Member for Chingford and Woodford Green (Sir Iain Duncan Smith), who is not here, referred to his friend Robert Nairac, who died; the right hon. Gentleman served with him and that has been on his heart.

[Sir Mike Penning]

As my right hon. Friend the Member for Chingford and Woodford Green (Sir Iain Duncan Smith) said earlier, we think that Captain Nairac died on 15 May. We do not know. There are people who know where his remains are; when I was a Northern Ireland Office Minister, people north and south of the border told me that they knew. Perhaps we might find the truth for my captain of C company, 1st Battalion the Grenadiers.

[Jim Shannon]

The right hon. Gentleman clearly outlines that he was a friend of Captain Robert Nairac, and we all understand that; the right hon. and gallant Member for Beckenham (Bob Stewart) was too.

[Sir Mike Penning]

I do not want the House to be misled. I was a guardsman; Captain Nairac was a captain, and in the Guards you know your position in life. However, I did spar with him in the gym a few times and gave him a couple of good digs.

[Jim Shannon]

The right hon. Gentleman and Captain Nairac served together, and that is the important thing to put on the record.

I want to put something from a different point of view and to speak about the victims. In the middle of all this debate—my hon. Friend the Member for East Londonderry (Mr Campbell) referred to it—it is important to focus on that. I do not want to speak as Jim Shannon the Member of Parliament for Strangford; I want to speak as the cousin of Kenneth Smyth.

Emergency Services Cenotaph: Westminster

Debate between Jim Shannon and Mike Penning

Thursday 9th September 2021 Commons Chamber

[Sir Mike Penning]

The right hon. Lady has hit the nail completely on the head. What better opportunity do we have? By the way, this campaign started long before covid—I shall come on to say a bit about how a lovely man called Tom got it going and how we got to this stage—but covid has brought the country together in a way that we have not seen since the second world war. Even though there is an expense and red tape—can we cut through some of the red tape?—and people will baulk at the fact that it will probably cost just over £3 million to do, who cares? In the scheme of things, £3 million is such a small amount of money when it could give so much to the country.

[Jim Shannon (Strangford) (DUP)]

I thank the right hon. Gentleman for bring this debate forward, and he and the right hon. Member for Normanton, Pontefract and Castleford (Yvette Cooper) for their perseverance in this task. I believe in and support this campaign because the right hon. Gentleman is right in what he is saying. This cenotaph will be for all the nations of the United Kingdom of Great Britain and Northern Ireland—for Scotland, Northern Ireland and Wales together—to thank all the people for all they have done. I want the right hon. Gentleman to know that I fully support what he is about and endorse his comments and campaign.

[Sir Mike Penning]

The hon. Gentleman is a great Unionist. I believe in the Union of this country, and the centre of the Union is where we are today: Westminster and Whitehall. To me, that is so important.

We have already raised £180,000, which has come from public donations. This is unusual for me, Madam Deputy Speaker, because as you know I never read in the House: I am dyslexic, something I am very proud of, and there is nothing I can do about it, so I do not usually read. But there are certain things that I want to read today so that I do not get certain people’s titles wrong, which I invariably do, and do not miss anybody out. We have already raised £180,000 and we need just over £3 million, but we also need two things, which I will come back to at the end: a decision on where the cenotaph is going to be and a commitment from the Government to help us to fund it.

The 999 cenotaph will be the first national monument to the NHS and other emergency workers who have served and will serve in future—it will be not just to those who have fallen. This is crucial: it is not just for those who have lost their lives, been seriously injured or been attacked in the line of duty. It will be a thank you—somewhere loved ones can go and just think about what their loved one has committed to the country. Some will have lost loved ones and some will have been injured in the line of duty. For our country not to have a central memorial to them shames us a little bit.

The 999 cenotaph is supported by His Royal Highness the Duke of Cambridge; the Prime Minister; the First Ministers of Northern Ireland, Scotland and Wales; and all the emergency services, including the fire service, the police, the coastguard and the Royal National Lifeboat Institution. Also, although I do not have them on my list, we have to be conscious that there are other volunteer emergency workers who are not part of the RNLI—when I became the Shipping Minister, I learned very quickly not to forget them, because safety inshore is very much done by them. The sculptor is the renowned Philip Jackson who created the Bomber Command memorial in Green Park and, closer to us, the Gandhi statue in Parliament Square. We could not have a greater person working on it. As I said, our preferred site is in Whitehall.

I have no idea what the Minister is going to say; we have not conferred. With my co-chair, I wrote a joint letter to the Prime Minister, so there is no doubt about what we are asking for. Hopefully, we might have a bit of good news. If we can get some movement on this, the monument should be finished by December 2022, in the year of Her Majesty’s platinum jubilee. If we can do that, what a fantastic message that would send.

There will be six figures on the plinth, plus one other, which I will come back to in a second. It will be in Portland stone and it will be 21 feet high from the ground to the top of the memorial. It will send an enormous message about how much this country cares. The six figures will be: a police officer, a firefighter, a maritime volunteer, a nurse, a paramedic, and a member of the search and rescue volunteer team—plus a service dog. We must not forget that it is not just human beings who go out there. Very often, they go out there with service dogs, whether police dogs or mountain rescue dogs. The figure of a dog will be a spaniel. There was a bit of discussion about what type of dog it would be. We are great dog lovers in this country. I think the spaniel works best. Those of us who are in this Chamber on a regular basis before the House opens for business know that the spaniels are here protecting us. I cannot think of a better breed of dog to be there.

How did we get to this stage? Tom Scholes-Fogg, the gentleman I referred to earlier, has been a trustee since 2016. In 2001, his grandfather John was a police sergeant in Greater Manchester. He was months away from retirement when one of his officers, PC Alison Armitage, was tragically killed on duty. I think that sparked something in him. In my constituency, PC Frank Mason was shot by bank robbers outside a Barclays bank years ago. Every single year, we come back and pay tribute to him. That is a small memorial in a constituency, in the middle of a town centre. I want one out here for the likes of Frank as well. Tom discovered, which surprised him, that there was no national memorial. When I first looked at this issue, I thought, “Of course we have one.” But actually, we do not. From one tragedy that happened to Alison, through Tom’s grandfather John and through Tom’s commitment, with his trustees—we have done all the directors and all the red tape; the Charity Commission is very happy—we have got to this stage.

We have some interesting quotes:

“As a society, we owe our wellbeing, and indeed our lives, to the men and women in our emergency services who work tirelessly to protect us in some of the most difficult circumstances. It is only fitting that we should recognise the vital role that they play and pay tribute to the bravery and dedication of those who have made the ultimate sacrifice for their communities.”

That was said by His Royal Highness Prince William, the Duke of Cambridge. I have another quote:

“It takes a very special kind of person to put your life on the line for a complete stranger.”

That is from a long quote from the Prime Minister. He is fully committed to this:

“I know the dedicated men and women of the Emergency services did not get into this line of work for the accolades or applause.”

They do so because they want to do it. He said:

“You are the heroes of British life”.

He fully supports what we are calling for. I could go on. There was support from the First Minister of Northern Ireland at the time. The leader of the Democratic Unionist party in Northern Ireland, one of our parliamentarians, supports this. Nicola Sturgeon supports it. I could go on.

Basically, I am saying to the Minister that we have a commitment from all the powers in this country. It cannot be much greater than the future King of this country, the Prime Minister of this country and the leaders of all parts of this country. We also have, I can assure her, fantastic support from both sides of the House.

In the great scheme of things, this is a small amount of money. The least worst thing we would like is to be exempt from VAT for this project. The next best thing might be that the Treasury would match-fund us. Actually, what I would like, to show the commitment to our emergency workers and our service animals, is for the Government to say, “We’re going to help you find a spot, with Westminster City Council, in Whitehall, and by the way we’re going to pay for it.” I cannot think of a better way to spend the British pound than to do that.

Medicinal Cannabis

Debate between Jim Shannon and Mike Penning

Monday 6th September 2021 Commons Chamber

[Jim Shannon]

The hon. Lady is absolutely right: we do have to move forward, and that is the message from us all in the Chamber tonight. I know that Robin, on behalf of Jorja, and Darren and Danielle, on behalf of Sophia, tried almost every other thing that they could before they came to medicinal cannabis, and they have seen the difference almost right away.

[Sir Mike Penning]

I am sorry to come back in because I did speak at length, Mr Deputy Speaker. Some of the medics have tried all the other medications. Many of those, as I alluded to in my speech, are completely off-label, were never intended for this and have not worked, but they are willing to block the medical use of cannabis oil with THCs. Why?

[Jim Shannon]

I bow to the expertise of the right hon. Gentleman and I wholeheartedly agree with him.

We need the Government and the Minister tonight to give us an assurance that they will cover the prescription beyond September. The letter I referred to asked the Government

“to clarify the guidance which enables children…to continue to receive this vital treatment”

via their GP

“under guidance from a specialist and funded by the NHS.”

The clinical trial for a treatment manufactured by MGC Pharma, which is due to begin in the autumn, was also referred to. Until that happens and until those trials are completed, we really need to recognise the proof that each of us as MPs have, on behalf of our constituents, and confirm that medicinal cannabis improves quality of life.

I also want to mention my sister and her son, Jake. Jake never had medicinal cannabis when he was young. I wish he did, because I tell you what: I can see the improvement that he would have had at a very early stage, which he does not have today because of all those years of epileptic fits. It grieves me greatly to realise that the opportunity that Sophia and Jorja had was something that wee Jake did not. If we had had that years ago, perhaps his improvement would have been much greater.

I support the hon. Member for Edinburgh West tonight and the right hon. Member for Hemel Hempstead and everyone else who will speak afterwards, including in interventions—I thank all those who have intervened. We are all united tonight on retaining medicinal cannabis for our constituents. We as MPs, on behalf of these parents and children, can see the evidential base, and what an evidential base it is. We always say, “Let’s have the evidence.” Well, we have the evidence. We have it individually and on behalf of those families, and tonight, I look to our Minister to give us the reassurance that we need on behalf of our constituents back home.