Oral Answers to Questions

Debate between Andrew Selous and Maria Caulfield

Tuesday 19th April 2022 Commons Chamber

[Maria Caulfield]

I thank the hon. Gentleman for his question. There has been no national removal of ear wax services, which can still be commissioned locally. NICE guidance is clear on the types of services that should be commissioned. Traditional methods of manual ear syringing are no longer offered for safety reasons, but electronic irrigation and microsuction should be being offered. If his local CCG is not commissioning such services, I am happy to meet him and them to discuss why not.

[Andrew Selous (South West Bedfordshire) (Con)]

GPs provided the service for decades. We all understand why the NICE guidance means that they no longer offer syringing, but there is a gap in that many clinical commissioning groups are not offering alternative services. We are talking about people with dementia or receiving end-of-life care who literally cannot hear and are going deaf. The Minister must be direct with CCGs on this issue.

[Maria Caulfield]

My hon. Friend is right that there must be consistency across the country in how those procedures are commissioned. After today’s questions I will take this up with officials to see why that is not happening consistently across the country.

Fibrodysplasia Ossificans Progressiva

Debate between Andrew Selous and Maria Caulfield

Monday 6th December 2021 Westminster Hall

[Maria Caulfield]

Absolutely. I would be very happy to do that. Part of this will probably be the co-ordination of what funding, help and support there is for researchers, and then bringing the researchers together.

I reassure those who signed the petition that the NIHR does not ringfence funds for research. The fund is open to everyone, whether they have one of the most common diseases in the country or one of the rarest. The £1 billion research fund is available to all, and funding applications are available for any aspect of human health. When applications come forward, they are subject to peer review, so research colleagues look at it and judge it, with awards being made on the basis of clinical need—clearly, today we have heard of a clinical need that exists—the value to healthcare services, value for money and scientific quality, so there is no barrier to people applying for the funding.

Since 2010, the Medical Research Council has contributed funding to three projects underpinning relevance to FOP and underlying conditions as well—a total of £6.6 million. Outside those studies, UKRI and NIHR have also looked at supporting musculoskeletal health, which, although not directly FOP-specific, will have relevance to that condition.

[Andrew Selous]

I just want to take the Minister back to a point she made a moment ago about the trials for new drugs being limited to a very small number of people because FOP is a rare disease. I wonder what the solution to that is. Do we try to get people with FOP all the way around the world to participate in a trial? I am not sure how many people would be needed for a trial for it to be validated by the Minister’s Department. There were 107 in the trial that I mentioned, which I presume is too small. I wonder how we overcome that when in each individual country there are only a very small number of people to do the trials on.

[Maria Caulfield]

Absolutely. Just to be clear, it is not the Government who would validate the trials; it would be the scientific community. If it is drug-related, the Medicines and Healthcare products Regulatory Agency would go on to change licences if it found a treatment that was applicable to FOP. In many conditions with such low numbers, often there are global studies, and the funding would not be restricted to a UK-based study. If it was part of a global study, I am sure that that would be acceptable. That is why it would be helpful to meet so that the support and mentorship available to researchers who are thinking of applying for funding could bottom out some of those issues.

I want to reassure colleagues who raised concerns that rare diseases are being pushed up the agenda. The rare diseases framework that was published in January is the first of its kind, and should reassure parents and children with FOP that this is an absolute priority. For too long, rare diseases, because numbers are low, have not had the significance, priority and attention that more common diseases with lots of campaigners and patients have had. The framework will push this to the top of the agenda.

The second reassurance I can give is that funding is available; there is £1 billion per year for clinical research across the board. Just because it is a rare disease does not exclude FOP from these funds. From a practical point of view, it does make research harder, as my hon. Friend the Member for South West Bedfordshire (Andrew Selous) highlighted. However, this does not mean that FOP researchers cannot apply for these funds; there are other criteria that are applied to low-volume scenarios.

Thirdly, I want to reassure Members that clinical research is happening. There are one or two studies that have taken off in this area; often that is the catalyst that needs to happen. I am hearing from colleagues across the House, who have constituents who are affected, that there is a desire to do more research. Very often, this desire is what is needed more than anything to find the researchers who want to do the research and have research questions—whether those are about diagnosis, treatment, or, ultimately, a cure. The funding is there to help support that, and there is practical help and support to bring those studies to fruition. Let me reassure colleagues that, as the Minister, I believe that research is the answer to many of the questions that have been asked today. I am very aware of how distressing this condition is, and the impact that it has on both the quantity and quality of a young person’s life. The Government are committed to ensuring that all rare diseases get better access to the resources that are there. With particular regard to FOP, I am sure that we can work with colleagues across the House to deliver answers to some of the questions they have asked today.

Oral Answers to Questions

Debate between Andrew Selous and Maria Caulfield

Tuesday 23rd November 2021 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

Women who have suffered are being helped and supported through the difficult choices that they are having to make. The Government have set up eight specialist mesh centres across the country to provide them with the specialist treatment that they need. Our priority is patient safety, preventing anything like this from happening again, and supporting women who have been affected. There is no evidence that a redress system would improve patient safety or improve the outcome for those women.

[Andrew Selous (South West Bedfordshire) (Con)]

T8. As ear syringing is no longer being undertaken in local surgeries, and as self-care does not work for many people, will the Government make sure that microsuction is at least available in every primary care network area? Otherwise, we are leaving people to go deaf.

[Maria Caulfield]

Local commissioners are responsible for meeting the health needs of their local population and should continue to ensure appropriate access to ear wax services. However, should a CCG not routinely commission ear wax removal or the suction method that my hon. Friend refers to, a patient can request an individual funding request. I am happy to help my hon. Friend if that is not happening locally.