Neuropsychiatric Conditions: PANS and PANDAS

Freddie van Mierlo Excerpts

Thursday 25th June 2026 Commons Chamber

[Freddie van Mierlo (Henley and Thame) (LD)]

I thank my hon. Friend the Member for North East Fife (Wendy Chamberlain) for securing the debate and for her advocacy in raising the profile of PANS/PANDAS. I also thank the hon. Member for Carlisle (Ms Minns) for the comments she made. I hope that she gets a response from her ICB very soon—I am waiting for one from mine.

Last month, I attended a meeting organised by the all-party parliamentary group on PANS PANDAS, which my hon. Friend the Member for North East Fife leads, to hear from young people directly on their experiences of the condition and the impact on their lives. What stuck with me from that meeting was a powerful comment by one of the young people there, who said, “We don’t want your sympathy. We want your action.” Let that comment last with the Minister, too—action, not sympathy.

One young advocate at the meeting was my constituent, 10-year-old Albie and his mother, who are watching the debate today from the Gallery and braved the heat to come here from Oxfordshire. Albie’s brother is diagnosed with PANS/PANDAS, and Albie has become a tireless and devoted campaigner on his brother’s behalf. Albie has launched a letter-writing campaign. He is already 19 months deep into his campaign and has become pen pals with the most powerful and influential people in the country, including His Majesty the King, the high sheriff of Oxfordshire, the Prime Minister, various Ministers, NHS leaders and leading clinicians and, of course, the Speaker’s Office.

Albie proudly showed me in a constituency surgery and again this afternoon his beautiful handwritten letters and the responses, all stored safely in a binder. I am proud to have on my wall in my office here in Westminster a thank you card from Albie, with his trademark drawing of a panda. His next campaign is to write to all 26 main children’s hospitals, asking them to send a doctor or member of staff to the PANS PANDAS UK clinical professionals conference in October in Royal Leamington Spa. His hope is that if more clinicians learn about recognising and treating PANS/PANDAS, children like his brother will receive help more quickly. Albie is an inspiration to all of us and is driven by love for his brother. I wish him continued success, and he has assured me today that he is already dusting off his pencils to write to the right hon. Member for Makerfield (Andy Burnham).

However, at just 10 years old, Albie should not be having to do this. He feels compelled to do it because the NHS and successive Governments have failed families like his. His family have had a difficult time getting the diagnosis and treatment needed, and that is not unusual. When surveyed, only 2% of patients and families said that GPs recognised that their child could have PANS/PANDAS. The path to diagnosis can take months or years, with persistence from parents required to advocate for children. Many are forced to spend thousands of pounds on private assessments and treatment because NHS support is inadequate. When asked by a show of hands at the all-party group meeting, every single young person said their family had paid for private treatment. It is unacceptable that an entire condition requires, by default, private care. It bakes in inequality and places extreme stress and strain on parents. I know as a parent that I would do anything for my child, and Albie’s mum is no different, but the financial pressure placed on ordinary, hard-working families like hers is devastating.

The lack of specialist clinicians and knowledge within the NHS appears to be a major cause of this, with too many clinicians misidentifying the condition and refusing treatments being deployed in the private sector. We urgently need better guidance for the NHS to close this gap. Families are fighting to be heard by professionals who all too often dismiss or do not recognise PANS and PANDAS. I therefore welcome the announcement that NICE will review independently produced guidelines from the PANS clinical guideline development group and PANS PANDAS UK through the guideline collaboration programme. However, I am concerned by my most recent correspondence on this topic with the Minister for Women’s Health and Mental Health, who sits in the other place, in which she said:

“Should the evidence continue to increase, organisations such as the NICE will consider updating clinical policy”.

My reading of this is that there is no clear commitment that clinical guidance will be adopted by NICE, and I would be grateful if the Minister here today could comment specifically on that point.

[Sir Julian Lewis]

At the risk of labouring the same single point I want to make again and again, there really does seem to be no downside to telling all GPs that if there is any question at all that a child might have PANS or PANDAS, the GP should prescribe them one of the basic antibiotics, because they could benefit from it tremendously, and there is no risk of harm.

[Freddie van Mierlo]

I wholeheartedly agree with the right hon. Gentleman. There are very few downsides of prescribing an antibiotic, especially in this instance, given the seriousness of the condition. As he says, there is really no good reason to withhold this medication.

A second challenge facing families is the impact on a child’s ability to participate in education, as they miss months of school because they are too unwell to attend. That not only affects their learning but limits opportunities to socialise, make friends and have a community beyond home. Every child has a right to an education. PANS/PANDAS does not limit ambition or ability, but our education system is placing limits on children with the condition. Section 19 of the Education Act 1996 is in place to stop that happening, and it requires local authorities to arrange suitable education for children who cannot attend school due to illness. However, the provision is not always effective for children living with PANS/PANDAS, and parents still need to be advocates for their own rights, rather than being proactively told them and guided through the process.

There is a wider point. Families are often left fighting for support from multiple systems at the same time, including healthcare, education and local authorities, while trying to take care of a very unwell child. It is the last thing they need. There are steps that the Government can take to limit the challenges. First, PANS/PANDAS must be researched in greater depth. It is currently unknown how many people are affected by PANS/PANDAS in the UK, and there is no official guidance on the diagnosis and treatment of those conditions in the NHS. Secondly, we need training of health professionals to recognise and treat the condition. PANS and PANDAS are conditions with a high risk of long-term disability, exclusion from society and failed education. Families express that if only their children’s condition had been recognised sooner by health professionals, it could have had a significant impact on their child’s wellbeing and outcomes.

Thirdly, we must improve the support offered to children in education. The publication of local authority guidance is anticipated this summer, and it is important that it ensures that schools and services meet their statutory duties for children with PANS/ PANDAS. Thousands of families are fighting for support from multiple systems while taking care of unwell children. It is time for the Government to do their part, and eliminate the barriers to diagnosis and treatment for those living with PANS/PANDAS.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

Albie is a superstar, as is his mum!

I call the Liberal Democrat spokesperson.

Nottingham Maternity and Neonatal Services

Freddie van Mierlo Excerpts

Wednesday 24th June 2026 Commons Chamber

[James Murray]

I thank my hon. Friend for her comments about the role of the families in fighting for justice. She is absolutely right that the recommendations of the Ockenden report, Baroness Amos’s report, which is due shortly, and other reviews and inquiries into maternity services must not simply end up on the shelf gathering dust. That is why the process that I have spoken about today, whereby the national taskforce that I chair will produce a comprehensive action plan by the end of the year, is so important. That will give us the right forum to develop a plan across all aspects and from all angles on this horrific scandal, including the inequalities faced by different families from different backgrounds that my hon. Friend alluded to. I agree with her wholeheartedly that this moment and this process that we are now going into must be a catalyst for change.

[Freddie van Mierlo (Henley and Thame) (LD)]

I thank the Secretary of State for the way in which he delivered the statement and the apology that he issued, which I think will be received as sincere and heartfelt. Hearing the details in the report, I am not angry but ashamed—ashamed that women and babies have suffered so grievously in this country at their most vulnerable moment. It is a moment of shame for all of us. The report and the Secretary of State speak of failed regulation. I was shocked to learn that a “good” rating can be issued by the Care Quality Commission even when there are still ongoing safety failures at a trust. Does he agree with me that no trust should be labelled “good” if it still has the “requires improvement” rating for safety?

[James Murray]

The hon. Gentleman makes an important point about regulators and our regulatory system. The report exposes how completely unacceptable it is that regulators have protected their own and what a serious matter that is. We need to ensure that the regulators are doing their job properly, that they have the right mandate to do so and that they have the right instructions about driving up performance in trusts across the country, because otherwise we run the risk of being in a situation in the future where we are again confronted with what he accurately described as shame.

Oral Answers to Questions

Freddie van Mierlo Excerpts

Tuesday 9th June 2026 Commons Chamber

[Mrs Hodgson]

I thank my hon. Friend for being so brave and willing to share his and his wife’s birth trauma, and to talk about the lack of support afterwards, not just with Baroness Amos and her review but with the House today. I know personally how hard it is to do that, but I also know the huge difference it can make to Government policy. I am happy to commit to him today that the Government will absolutely look closely at all the findings in Baroness Amos’s review, and work with the national maternity taskforce to translate the recommendations into action. I am also pleased to confirm that we have recently updated our national health visiting guidance to include a high impact area on family mental health, with a clear focus on supporting both mothers and fathers.

[Freddie van Mierlo (Henley and Thame) (LD)]

It is not just the number of health visitors that needs to be improved. Women report to me that they have skipped appointments due to negative experiences with health visitors, especially around breastfeeding. Will the Minister commit to improving the training of health visitors, so that women receive the best quality care?

Health Bill

Freddie van Mierlo Excerpts

2nd reading
Monday 1st June 2026 Commons Chamber

[Freddie van Mierlo (Henley and Thame) (LD)]

All too often in my role as a local MP, I have been frustrated by the buck-passing in the NHS. My local ICB cuts a service, pleading no money, or refuses to fund a new one. It tells me to ask the Government, the Government tell me it is a local decision for the ICB, and the cycle goes on.

With this Bill, I welcome the accountability conferred on the Secretary of State, but I am slightly gobsmacked that he has agreed to it. Every Back Bencher should be rubbing their hands with glee. This legislation makes the Secretary of State personally responsible for commissioning arrangements in all ICBs. I look forward to sending him a letter on the day the Bill receives Royal Assent listing every change I want him to make. My ICB has one of the worst offers on IVF, it has been far too slow to adapt to new dynamics in ADHD and autism, it has left commissioning gaps in palliative care and closed down step-down beds, and now it wants to close down child and adolescent mental health services.

I make this prediction: the office of the Secretary of State for Health and Social Care will balloon under this legislation, because every Back Bencher will appeal to him to make sure that they get their local commissioning arrangements sorted. This reform is, of course, fully in line with the UK’s overly centralised Whitehall system, but it is not in line with the Government’s supposed devolution agenda. Mayors could be the answer, but the Government have been too timid about the role of mayors, who merely sit as members of the ICB. What of areas that have been slow to get mayors?

Although the Bill addresses ICBs, there is no reform of the sclerotically slow-to-act Joint Committee on Vaccination and Immunisation or UK National Screening Committee; they have been painfully slow to act on spinal muscular atrophy screening.

Although I welcome the single patient record, I would like to raise a serious concern. In my constituency, I was recently made aware of a case of a patient’s record being accessed multiple times, unrelated to their care. In fact, they were not receiving care at the hospital at the time; instead, they were campaigning on maternity care. Clinicians had no business looking at the record. Although a single patient record of this scope is welcome, it opens up the abuse of data privacy on steroids. What steps will be taken to protect data and confidentiality?

Finally, I want to discuss how the National Institute for Health and Care Excellence recommendations are implemented. Trusts have 90 days to implement NICE technology appraisals, yet this Bill confers on the Secretary of State the right to change that. How will that be handled? It should definitely be considered further in Committee.

Oral Answers to Questions

Freddie van Mierlo Excerpts

Tuesday 14th April 2026 Commons Chamber

[Dr Ahmed]

I am grateful to my hon. Friend for highlighting those cuts and the devastating impact they had, particularly on mental health and eating disorder services. She is absolutely right that we have to do a lot more on the pathways, including harmonising some of the data and clinical coding to make sure that we are catching people early in the process. As I said, the prevalence review will now focus on eating disorders as well—that is a welcome intervention—and of course, children become adults, so we must end the cliff edge at the age of 18 and make sure that care continues in a holistic fashion. We are getting on with that.

[Freddie van Mierlo (Henley and Thame) (LD)]

Young girls are particularly vulnerable to eating disorders, which are a parent’s worst nightmare. We are seeing social media companies push content on to young girls that encourages eating disorders. What is the Minister doing with Cabinet colleagues to take on this problem?

[Dr Ahmed]

The hon. Gentleman is absolutely right. The Government are conducting a consultation to examine the most effective ways that we can go further to ensure that children have healthy online experiences. The three-month consultation, which is evidence-led and has input from independent experts, will include determining the right minimum age for children to access social media, and it will report in the summer.

Oral Answers to Questions

Freddie van Mierlo Excerpts

Tuesday 24th February 2026 Commons Chamber

[Karin Smyth]

My hon. Friend makes an excellent point that many of us will, unfortunately, recognise. We need to address variability in training, through the NHS health checks and training that is being rolled out by both the General Medical Council and the royal colleges. We need to go further. There are some great examples, both in London and across the country, of multidisciplinary teams helping with training for specialist services, and of initiatives like menopause cafés to support women. We need to take those best examples to the rest of the NHS.

[Freddie van Mierlo (Henley and Thame) (LD)]

Hormone replacement therapy is a godsend for many women experiencing menopause, but there is a dire shortage of HRT implants. These are unlicensed medicines, but they are absolutely essential for treatment, particularly for women for whom other treatments do not work. There are women in my constituency who are suffering very badly with poor mental and physical health impacts as a result. I have submitted a number of written questions and received responses from Ministers, in particular the Under-Secretary of State for Health and Social Care, the hon. Member for Glasgow South West (Dr Ahmed). We really want to know when action will be taken on this, and when we can get the implants that these women so desperately need.

[Karin Smyth]

The hon. Gentleman makes an important point about supply and availability across the country, which is something we monitor regularly to ensure that if there is a shortage of a medicine in an area, there are alternatives available. We will continue to keep that under review, to ensure that women have the services and the medication that they need.

Pharmacy First: Withholding Payments

Freddie van Mierlo Excerpts

Thursday 12th February 2026 Commons Chamber

[Dr Ahmed]

I am grateful to the hon. Gentleman for adumbrating how 14 years of Tory Government have led to significant decay in the provision of primary care services in some of our communities. He is right to mention dispensing doctors, who are a vital part of the mixture in hard-to-reach and coastal communities. I had many meetings with them prior to my appointment, and my colleague the Minister for Care will continue to meet them to ensure that they continue to be part of the mix of care provision in those communities.

[Freddie van Mierlo (Henley and Thame) (LD)]

Last year, I visited a pharmacy in Benson in my constituency, where Vik Patel described to me how the pharmacy’s being rural disadvantages it in the Pharmacy First scheme. His pharmacy never meets the threshold to qualify for payment, and that threshold has gone up over and over again, from five patients a month in April last year to 30 in March 2025, so the pharmacy is effectively delivering a service for free. Vik is a lovely chap, and he is happy to do that, but it is not a sustainable business model. What will the Minister do to help rural pharmacies like mine in Benson?

Medical Training (Prioritisation) Bill

Freddie van Mierlo Excerpts

2nd reading
Tuesday 27th January 2026 Commons Chamber

[Wes Streeting]

I will give way to the hon. Member for Henley and Thame (Freddie van Mierlo) and then to my hon. Friend the Member for Hitchin (Alistair Strathern).

[Freddie van Mierlo (Henley and Thame) (LD)]

A constituent of mine is studying medicine at Queen Mary University of London but at a campus in Malta. Students at the Malta campus complete the same General Medical Council-approved curriculum, assessments and licensed exams as London-based students, and graduates hold a UK primary qualification. He was given a formal guarantee that he would be at no disadvantage if he chose to study at the Malta campus. Can the Secretary of State reassure me that graduates like my constituent will be prioritised on the NHS foundation medical training programme?

[Wes Streeting]

Students studying in Malta will not be prioritised in the Bill, but they will still be able to make applications. Queen Mary University’s Malta website is clear that Queen Mary does not administer the UK foundation programme and cannot control whether or on what basis applicants are accepted into the programme, and no one is guaranteed a post on qualification.

Oral Answers to Questions

Freddie van Mierlo Excerpts

Tuesday 21st October 2025 Commons Chamber

[Freddie van Mierlo (Henley and Thame) (LD)]

Oxford university hospitals trust is one of just three trusts that do not provide givinostat for Duchenne through the early access programme. Last week, I attended a roundtable at which one of my constituents, Alex, advocated on behalf of his son, Ben, who is not getting the treatment. We discussed lessons learned from the early access programme. Will the Secretary of State meet me, Duchenne UK and the all-party parliamentary group on access to medicines and medical devices so that we can share those lessons with him?

[Wes Streeting]

I have had the privilege of meeting some of the campaigners, and particularly the young people affected by that cruel condition, and I understand the hon. Gentleman’s frustrations. I know that the medication is being put through the National Institute for Health and Care Excellence process, and I hope that that will deliver a positive outcome. I would be delighted to keep him apprised of progress.

Duchenne Muscular Dystrophy

Freddie van Mierlo Excerpts

Thursday 12th June 2025 Commons Chamber

[Chris McDonald]

I thank the hon. Member for that intervention. I am very pleased that he has intervened and I think the comment about a postcode lottery is exactly right. I noted, when I looked at the figures, that currently the Belfast health and social care trust is not offering the drug to lads in Northern Ireland, because it is claiming that it will cost £309,000 for 13 patients. That is different from the rest of the country by an order of magnitude, so I would be grateful if the Minister looked very carefully at the situation in Northern Ireland.

[Freddie van Mierlo (Henley and Thame) (LD)]

I thank the hon. Gentleman for securing this debate. I have been engaging with the Oxford NHS trust, which is not yet providing givinostat to boys in Oxfordshire. Its own business case suggests that it would cost less than £2,000 per boy and £66,000 in total for the 35 boys. Clearly, as a country, we should be able to afford such a sum. Does he agree that a hospital that wants to be world-leading should be providing it? Does he further agree that this is exactly the sort of thing we need Government intervention on, so that these boys can get treatment as soon as possible?

[Chris McDonald]

I do agree. I recognise the figures from the Oxford university hospitals NHS foundation trust. It is quoting around £2,000 per lad treated, which I understand is very similar to other areas of the country. I see that as quite a small amount of money for the 35 lives that could be saved.

Despite, as we have heard, givinostat being available for more than seven months, there has been a very inconsistent approach across the UK. A very small number of ambulant people living with DMD have so far received the treatment, and no non-ambulant boys have been treated with it yet.

--- Later in debate ---

[Karin Smyth]

I thank my hon. Friend for that constructive suggestion. We need to wait to see how the NICE recommendation goes in July. With this disease and so many others, it is important to share learning and information, and trusts should be encouraged and supported in doing so. We will work with him on that constructive recommendation.

I understand my hon. Friend’s concerns about the fact that non-ambulant patients are not yet able to access givinostat, but it is important to note that the eligibility criteria for participation in the early access programmes have been determined by the pharmaceutical company. NHS trusts that decide to participate in the EAP must only provide treatment in line with the criteria, which state that patients must be ambulant. A clinical trial is being carried out by the pharmaceutical company to evaluate the safety and tolerability of the drug in non-ambulant patients, and to further explore the efficacy of the drug in this population. I know that for the patients and families affected, it will be disappointing to hear that there is no access to the drug for ambulant patients before a NICE decision, or for non-ambulant patients prior to clinical trials being concluded. I want to assure my hon. Friend that we have arrangements in place to support rapid access to new medicines.

[Freddie van Mierlo]

Will the Minister give way?

[Karin Smyth]

I will not; I want to finish in the time available, and I think Members want to hear the full response.

Outside of company-led EAPs, there are established routes for patients to get access to new, innovative medicines prior to them being licensed. The early access to medicines scheme, or EAMS, helps give people in the UK with life-threatening or seriously debilitating conditions early access to new medicines that are not yet licensed where there is a clear unmet medical need. EAMS is supported by key partners, including the MHRA, NICE and NHS England, and is a key part of this Government’s commitment to accelerating patient access to innovative, life-changing treatments, in support of the UK’s position as a global leader in life sciences. In fact, since the scheme launched in 2014, over 50 medicines, including for this disease, have benefited from being accessed early through EAMS.

The innovative medicines fund has also made available £340 million of ringfenced funding for the NHS to fund early access to medicines that NICE has recommended with managed access. Through this process, licensed treatments that demonstrate substantial clinical promise but still have significant uncertainty around their clinical and cost-effectiveness can be funded. Further evidence is then collected on the drug for a defined period of time. That is considered by NICE in determining whether the drug can be recommended for routine NHS funding.

The Secretary of State has been clear that if givinostat is recommended by NICE in draft guidance, NHS England should aim to work with the pharmaceutical company to provide early funding through the innovative medicines fund. This could potentially speed up access by up to five months, and the treatment could be funded as soon as this summer, if recommended.

This scope of this debate is wider than just access to new medicines. It is important to note that while rare diseases are individually rare, they are collectively common. One in 17 people will be affected by a rare condition over their lifetime. The UK rare diseases framework outlines four priorities, based on engagement with the rare disease community. They are: helping patients to get a final diagnosis faster, increasing awareness of rare diseases among healthcare professionals, better co-ordination of care, and improving access to specialist care, treatments and drugs. In England, we publish a rare diseases action plan annually. These detail the specific steps we are taking to meet the shared priorities of the framework. I am pleased to highlight the 2025 England action plan, which was published in February this year on Rare Disease Day. One such action is reviewing the effectiveness of early access schemes, such as the early access to medicines scheme, the innovative licensing and access pathway, and the innovative medicines fund. They are all designed to help make innovative treatments available earlier to patients who need them. We are specifically considering how well they support access to treatment for people living with rare diseases like Duchenne.

NHS England, NICE and MHRA will meet annually to continue to discuss progress on these schemes. These meetings will include representatives from patient advocacy groups and from industry, and clinical researchers, and the next one will happen in the summer.

Managing a complex rare condition can be challenging, and it often means interacting with many different specialists and providers of health and social care. It can mean travelling across the country to access highly specialist care from experts. All of that can add up to a significant emotional and physical burden, and it can deepen inequalities. Co-ordination of care can minimise this burden on patients and their carers, and it can ensure that healthcare professionals work together to provide the best possible care, as we have discussed this evening.

In the 2025 action plan, we have introduced a new action to incentivise providers to run clinics for multi-system disorders, in order to reduce the number of appointments and improve co-ordination of care for families. The NHS is also working to include the definition of “co-ordination of care” that is set out in the CONCORD—co-ordinated care of rare diseases—study in all new and revised NHS service specifications for patients with rare diseases.

I recognise how hard it is when patients want access to these new treatments. I also recognise the distress and worry it causes, not only to patients, but their families and friends. Hon. Members have articulated that well on behalf of their constituents this evening. The Government are committed to providing access to the most innovative medicines, but it has to be at a price that provides value for the NHS, and it has to be clinically safe and effective. That is why we are working hard with industry, NICE and MHRA to make that happen. I know that my hon. Friend the Member for Stockton North will continue to work with the Government and providers to make that happen. I am grateful for the opportunity to respond to this debate on such an important issue.

Question put and agreed to.