Fibrodysplasia Ossificans Progressiva

Debate between Ian Paisley and Mike Penning

Monday 6th December 2021 Westminster Hall

[Ian Paisley (North Antrim) (DUP)]

Thank you, Sir Roger, for calling me to speak in this debate. I add my congratulations to the mover of the motion on the petition today, the hon. Member for Carshalton and Wallington (Elliot Colburn). I am grateful that we all have an opportunity to speak about this rare disease and how it affects some of our constituents.

It is absolutely amazing that we are actually having this debate, when we consider how rare this disease is. That says something about the temerity of and strength of feeling among those who are in FOP Friends, those who suffer from the condition and those in our society who are just genuinely concerned about it. This matter weighed so heavily upon them that it had to be brought to the House. When I consider that one in a million or one in 2 million may have this condition, it is amazing that they have been able to lobby, cajole, persuade and encourage people to sign this petition and get it to the Floor of the House. That fact should not just be left on its own. It should not be underestimated just how significant an effort has been made by so few. It is important.

My constituency has, I think, the largest petitioning group in Northern Ireland—658 petitioners—and across every constituency in Northern Ireland between 100 and 200 constituents did this, yet in Northern Ireland there are known to be only two cases. That says something about the power of lobbying, and it puts a great onus on Members of this House that our communities have felt so strongly that this matter has to be debated even though it affects a very small section of our society. That is what Parliament is about: helping the most vulnerable; helping those who are left behind and can be forgotten. It is absolutely certain that without this debate, FOP would hardly have been heard of. It would have been discussed among those who had a genuine interest in it, or a connection with someone who has the condition or with their family, but to debate it on the Floor of the House is incredibly important—indeed, it is a landmark, and it is important to say so.

Each Member who has spoken so far has mentioned an individual who they have known, and I have been contacted by Lucy Fretwell and Zoe, her sister, who both have this condition. It is incredibly rare that one sister would have this condition, but both do. They wrote to me to say that FOP

“only affects one in a million people. Unfortunately, FOP has affected my sister and I and we have been diagnosed with the disease. Zoe and I have been living with it for 30 years. We are the only two people in Northern Ireland that suffer from FOP.”

She was so concerned that this matter must be debated, and she implored Members to be in this debate, so it is a privilege for me to speak for Zoe and Lucy today.

[Sir Mike Penning]

Part of this debate is about the fact that we do not really know how many people have this condition. I have referred to the misdiagnoses that we have seen—we can google them. People have had amputations in other countries because they thought this condition was cancerous, and the amputation made it worse. If we had better diagnosis and better expertise and knowledge out there, I think the figures would be much higher in the province.

[Ian Paisley]

The right hon. Gentleman is absolutely right: it is only through awareness that we know this condition is probably much broader and deeper in our society. Those few who have been diagnosed are obviously encouraged and energised to write to us and lobby about it, but he is absolutely right that they are only the tip of the iceberg. Those people know about the condition, but many others do not. I for one do not believe that over 3,000 people from Northern Ireland petitioned us on this matter because of two people. There are many more across our society, but we have to look at the facts that are in front of us and relay them to the House.

I will make one other point in today’s debate, which is that the Government have a framework for dealing with rare diseases. That UK framework is critically important, because it commands the Government to do two things: help patients and increase awareness. Today, we are doing the second part of that. We are increasing awareness by having this debate and encouraging the Government to be more active and respond on these matters. Increasing awareness is vitally important, but when it comes to helping patients, no Member of this House can do anything about that. It is the Government who can do something about it by doing what these petitioners ask for: directing resources into research into this rare disease, making sure that that research not only is dedicated and focused, but hopefully leads to outcomes.

If there is any country in the world that should be proud of what medical research delivers, it has to be this nation. Look at what we have delivered over the past two years through targeted, effective research. If that is what we can do under emergency conditions, what more could we do if there were some targeted research and resources directed at this condition?

Like many others, I implore the Government to listen to the pleas of Lucy, Zoe and the many thousands of others who we are aware of. I encourage the Government to respond positively to this petition.

Northern Ireland Budget (No. 2) Bill

Debate between Ian Paisley and Mike Penning

2nd reading: House of Commons
Monday 9th July 2018 Commons Chamber

[Ian Paisley]

The point that the right hon. Gentleman is making is compounded by the fact that each month, the Police Service of Northern Ireland loses 50 officers for the very reason that he identified. For a force the size of the PSNI, that loss is hugely significant, because we are not getting in the experienced officers we need with the skills to deal with the issues. Does he agree with the point that the Chief Constable made to the Northern Ireland Affairs Committee earlier this month, which was that nationalists and nationalist leaders in Northern Ireland have to step up to the plate and encourage their community to join the police and to see it as a career for all the community?

[Sir Mike Penning]

My hon. Friend is absolutely correct. If we are going to have a community police force, and we created the PSNI for that reason—we abolished the RUC and created the PSNI—it has to be a force of all the people. For that reason, I completely agree that politicians on the nationalist side have to step up to the plate. Let us be honest about it: there are Catholics serving in the PSNI, but they are continually under threat.

Oral Answers to Questions

Debate between Ian Paisley and Mike Penning

Monday 12th December 2016 Commons Chamber

[Mike Penning]

I was at the Ministry of Justice when we revoked the legal aid, and if it was not for this Secretary of State and my former colleague sending submissions to the Solicitors Regulation Authority, Mr Shiner would probably still be pursuing our soldiers and servicemen. Mr Shiner should probably do exactly what the Secretary of State called for him to do in December 2014 and apologise to our former servicemen.

[Ian Paisley (North Antrim) (DUP)]

As someone who has served with distinction in Northern Ireland, the Minister of State must be disgusted by the industrial-scale abuse of the legal process against former soldiers, which has impugned the reputation of every single soldier who has served in Ulster over the last 40 years. Will he and his Department undertake to be a bulwark against that abuse and against that witch hunt, and will he stand up and make sure that it is stopped forthwith?

[Mike Penning]

I had the honour of serving in the Province and—I hope—I was part of the peace process. The vast majority of our servicemen and women served with distinction in Northern Ireland. The MOD and I will continue to support the police force in Northern Ireland with its ongoing inquiries. That is what was said on the radio at the weekend: these are not new investigations; they are ongoing investigations. I pay tribute to the hon. Gentleman for the work that he has done in the past, and I wish him a happy 50th birthday today.

Oral Answers to Questions

Debate between Ian Paisley and Mike Penning

Wednesday 5th June 2013 Commons Chamber

[Mike Penning]

Like fuel smuggling, cigarette smuggling is a serious problem, not least because of where the profits go—we know that some go into terrorist activities. I work closely and meet regularly with HMRC and we will meet again soon, but at the end of the day we must make sure that when we get the smugglers, they are prosecuted correctly and get the right sort of sentence.

[Ian Paisley (North Antrim) (DUP)]

Is the Secretary of State telling the House today that she is content with the delay in the implementation of the invitations to make submissions procedure between Customs and Excise in the Republic and HMRC in Northern Ireland? The delay is frustrating the security services, putting billions of pounds into the hands of criminals and, importantly, assisting organised crime. What is she going to do about it?

[Mike Penning]

Speaking on behalf of the Secretary of State in answering this question, let me say that we are doing everything we possibly can. Are we frustrated? Yes, we are. Are the police frustrated? Yes, they are. But we have to make sure that the system is robust and legal, and we will get there.

Oral Answers to Questions

Debate between Ian Paisley and Mike Penning

Wednesday 6th March 2013 Commons Chamber

[Mike Penning]

At the outset, let me pay tribute to the work that the hon. Gentleman has done over the years. I know I upset him the other week when I was slightly robust, but Mr Speaker has also rebuked me for being too soft and quietly spoken in the past couple of weeks. Let us put it this way: I served in the Province and am very proud to have done so. No bomb is acceptable and we must get to the truth.

[Ian Paisley (North Antrim) (DUP)]

Will the Minister of State acknowledge that I am a member of the second largest party of opposition in this House—that is, not the Labour party—and indicate what other reports by the Historical Enquiries Team are pending on other atrocities in Northern Ireland? Will he demonstrate that the HET must do more to reassure the majority community, as republicans murdered Protestants in Northern Ireland in cold blood and the HET should demonstrate that in its publications and findings?

[Mike Penning]

The issue has been raised with me on more than one occasion. I have continually looked into the evidence base and if the hon. Gentleman has evidence that such work is not taking place across the political divide in Northern Ireland, he should come and see me about it. He knows that he will get a welcome response.

Oral Answers to Questions

Debate between Ian Paisley and Mike Penning

Wednesday 24th October 2012 Commons Chamber

[Mike Penning]

I met the Minister for Justice in the Northern Ireland Assembly, and we will work together to ensure that the punishment fits the crime. As I said earlier, money made from such crimes often goes to the wrong areas, and we are looking forward to ensuring that it does not.

[Ian Paisley (North Antrim) (DUP)]

I add my voice of congratulation to the Secretary of State; I know that the people of Northern Ireland wish her and her colleague well in their new roles.

A recent HMRC report on measuring tax gaps revealed that fuel smuggling over the past year has increased from involving 12% of all diesel sold in Northern Ireland to 25%—a staggering increase. Does the Minister agree that HMRC must be encouraged to find a measure that will allow it to mark properly fuel in Northern Ireland, so that it cannot be stripped of its mark and sold as counterfeit?

[Mike Penning]

This sort of technical work is being looked at carefully, and one element that will help enormously is the lorry road user charging legislation that the Government started to bring forward yesterday. That will create a more level playing field for all hauliers—those who are hit hardest by this problem—across the entire United Kingdom including, quite rightly, in Northern Ireland.

Coastguard Service

Debate between Ian Paisley and Mike Penning

Wednesday 2nd February 2011 Westminster Hall

[Mike Penning]

I gave way previously because I specifically referred to Falmouth. If we are to go forward, we have to be honest with our constituents about what is going on. Let me just touch on some of the points and some of the things I have heard on the airwaves and read in the paper.

There will be no reduction in the cover provided to rescue people. The service provided by those fantastic almost completely voluntary people who give up their time to go out will be enhanced and invested in. That service will not under any circumstances be touched. We will invest and go forward. They know that. We worked with the unions very early on and we talked to them all the way through. It is wrong—really wrong—to use emotive language and say that people would die if these changes take place because there is no evidence for that. I listened to the hon. Member for Ynys Môn (Albert Owen) earlier talking about such things. I have been at incidents where people have died. I have gone in and done everything possible, like the people in the crew that was mentioned. We do not know whether that crew would have got there any quicker under a new or existing system. What I will do—this has been touched on several times in the past few minutes—is publish the risk assessment next week; not at the end of the consultation, but next week. That will mean that everyone, including hon. Members’ constituents, can look at it. I have been accused of not publishing it and not acting. It will be published next week and it can be part of the consultation as we go forward.

[Ian Paisley]

Will the Minister give way?

[Mike Penning]

The hon. Gentleman will have to bear with me because I have two minutes left.

We should not sit back and, on behalf of our constituents, say that we think all stations can stay open and that everything is fine. I know that the previous Government looked at the matter because it was on the table when I was appointed. My hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick)—I call him my hon. Friend because we have been friends for many years—has been sensible and this has been quite a sensible debate. What worries me is that, when hon. Members go home, they will say to their local papers tonight—I have seen such things in the papers that land on my desk in the morning—that lives are at risk and are going to be lost. The headlines will be : “Cuts to your service,” “Cuts to the frontline,” “Cuts to this.” That is not going to happen. There will be job losses. Some will be voluntary and some will be compulsory.