Fibrodysplasia Ossificans Progressiva

Ian Paisley Excerpts

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.