Fibrodysplasia Ossificans Progressiva

Debate between Mike Penning and Anum Qaisar

Monday 6th December 2021 Westminster Hall

[Ms Anum Qaisar (Airdrie and Shotts) (SNP)]

It is a pleasure to serve under your chairmanship, Sir Roger. I thank the hon. Member for Carshalton and Wallington (Elliot Colburn) for leading this important debate. I am not aware that anyone from my constituency of Airdrie and Shotts has been diagnosed with FOP, but I thank everyone who signed the petition, including 104 people from my constituency.

I thank the hon. Member for Wythenshawe and Sale East (Mike Kane) for so clearly setting the scene. I echo his comments about more funding being required. I was heartened to hear that Oliver’s school is making appropriate changes to accommodate him. As a former teacher of social subjects, I am especially pleased to hear that history is one of his favourite subjects—that brings me great joy.

I completely agree with the right hon. Member for Hemel Hempstead (Sir Mike Penning), who said that FOP is incredibly rare and that it is indicative of democracy that so many people have signed the petition. I thank him for telling Lexi’s story and for all the work that he does to raise awareness of FOP.

As the hon. Member for North Antrim (Ian Paisley) said, the power of lobbying is so vital to democracy, so I welcome the fact that this rare disease has been brought to the House’s attention. He spoke powerfully about sisters Lucy and Zoe and how they are the only known cases in Northern Ireland. I echo his comments about the genuine concern that misdiagnosis could mean that the figures are higher than we think. I also thank the hon. Member for South West Bedfordshire (Andrew Selous), who spoke powerfully of the positive progress that has been made in tackling and raising awareness of this rare disease.

Let me take a moment to thank Chris for launching the petition. As has been said, Chris and his family created FOP Friends after his son, Oliver, was diagnosed with this rare disease. At the time of Oliver’s diagnosis, there was no charity in the UK that focused on supporting those with the disease. Since its creation, FOP Friends has helped to support those with FOP and their families, and to raise genuine, good public awareness about the need for medical research into the disease.

There is no known cure for FOP. The disease is caused by a mutation in a gene, a mutation that was only discovered some years ago. The rarity of the disease means that research in the United Kingdom has been limited, as has been stated already. Only the University of Oxford has a dedicated programme looking into FOP, with most of the funding for the research coming from donations from charities such as FOP Friends.

[Sir Mike Penning]

I just want to pick the hon. Lady up on something. If I am wrong, perhaps the record will be corrected, but I think that all the funding—all of it—comes from fundraising by FOP Friends. That is a very important point.

[Ms Qaisar]

The right hon. Member is correct that all the funding comes from FOP Friends. I misread my notes, for which I apologise.

The lack of proper funding for research is holding back progress in finding a cure. Further progress can be made by improving the levels of potentially international co-operation in research into the disease.

The benefits of finding a cure for FOP are numerous. As was said by the hon. Member for South West Bedfordshire, those benefits might not just be limited to helping those with FOP. By improving our knowledge of what causes FOP and potentially finding a cure, the medical profession may gain invaluable insight to help it to combat more common health problems, such as osteoporosis, fractures and even battlefield injuries.

In January 2021, the UK rare diseases framework was released. It aims to improve the lives of those living with rare diseases, such as FOP, and it proposes a four-nation approach to support those living with a rare disease. That includes nation-specific action plans that aim to improve the effectiveness of combating rare diseases. It is hoped that the framework will help patients to receive quicker diagnosis, will increase awareness within the healthcare profession about spotting the signs of rare diseases, such as FOP, and will improve access to specialist care, treatment and drugs.

The Scottish Government understand the importance of the framework and are committed to implementing the 51 commitments outlined within it. They also welcome the progress that has been made in Scotland in delivering genomic medicine and in empowering patients through the UK’s rare diseases forum. Of course, still more can be done. Over the next two years the Scottish Government will continue to develop an action plan that works closely with the rare diseases community. The consultation will ensure that those with a rare disease, including FOP, are appropriately reflected in governmental policy. That will ensure that those with rare diseases have proper access to services in areas such as mental health and social care. The Scottish Government remain fully committed to ensuring that there is continual improvement in supplying patient-centric care that is safe and effective for those living with a rare disease.

To better detect rare diseases such as FOP, the Scottish Government have allocated an additional £4.3 million over the next two years to ensure that regular genetic testing includes tests for rare diseases. Improvements in genetic testing will help to increase the number of rare diseases picked up by these tests, allowing doctors to provide the correct support and treatment for patients. The Scottish Government are committed to doing what they can to improve the lives of those living with rare diseases, but they fully appreciate that more still can be done.

[Sir Mike Penning]

I appreciate that this is a devolved matter, but in many cases these children do not have two years. The hon. Lady has seen some of the photographs, so she knows the condition that will deteriorate further with these life-threatening diseases while the consultation goes on for two years. As I say, I appreciate the matter is devolved to Scotland, but as with England and Wales, Scotland has to say, “Two years is too long. Let’s sort it out now.”

[Ms Qaisar]

I thank the right hon. Member for his contribution. I do not think that anyone would disagree that all Governments need to do more in tackling the problem. He spoke, very powerfully, of his constituent, and it is incredibly important that Ministers in all four nations are listening very clearly.

In conclusion, I hope that the Minister, and the Government, will agree that more funding is required to combat rare diseases such as FOP. I look forward to hearing her contribution. The petition has helped to raise awareness of an incredibly rare disease, and I again want to put on record my thanks to the family for bringing the issue to the Floor of the House and encouraging people to sign their petition. It highlights the need for action by Governments to combat rare diseases. I hope it is not too long until we find a cure for FOP, for Oliver and for loads of other children like him across the four nations.