PANS and PANDAS

Abena Oppong-Asare Excerpts

Tuesday 12th September 2023 Westminster Hall

[Abena Oppong-Asare (Erith and Thamesmead) (Lab)]

It is a pleasure, as always, to serve under your chairship, Mr Dowd, and it is my pleasure to speak for the first time in my new shadow ministerial role.

I congratulate the hon. Member for North East Fife (Wendy Chamberlain), and thank her for championing this important issue, which she has eloquently raised. She has previously raised it on a number of occasions, and has in particular talked about her constituent, the nine-year-old girl who I believe is still facing this incredibly challenging condition. The hon. Member spoke on behalf of her constituents today, as other people in the debate have. She has been a champion on the issue by talking about how the conditions affect people—from raising it in Prime Minister’s questions and her work on the all-party parliamentary group on PANS and PANDAS, to securing today’s Westminster Hall debate. I thank her for her work.

I also thank everybody who has contributed to the discussion. They have also spoken passionately about their affected constituents. For example, the hon. Member for North Devon (Selaine Saxby) talked about her constituent Jack. My hon. Friend the Member for Brentford and Isleworth (Ruth Cadbury) talked about the chronic lack of awareness and about how getting a diagnosis is key, which was echoed by the hon. Member for Aberconwy (Robin Millar). I commend the hon. Member for South West Bedfordshire (Andrew Selous) for his leadership in taking the time to circulate literature to GPs, who I am sure will find that information useful. I also echo what was said by my hon. Friend the Member for Wansbeck (Ian Lavery): this debate raises further awareness about the condition.

As hon. Members have mentioned, PANS and PANDAS are a set of conditions that result in an inflammation of the brain, which gives rise to an array of symptoms such as OCD, tics and dietary restrictions. It is a cruel condition that can affect a child overnight and out of the blue. The conditions are often misdiagnosed and blamed on bad behaviour or poor parenting. The symptoms can manifest suddenly and bring about profound life changes, as we know not just from the data but from the stories shared by hon. Members in the debate. I found it particularly concerning that as little as 10% of NHS doctors have heard of the condition. That means many children are being misdiagnosed and mistreated. The charity PANS PANDAS UK estimates that approximately 8,500 children experience the disorders. I send my sincere empathy to everyone who faces those challenges and all the families affected.

Those who need treatment and support face major barriers. There is currently no guidance for PANS and PANDAS written or endorsed by bodies such as the National Institute for Health and Care Excellence, NHS England or the royal colleges. As Members have mentioned, those barriers result in many families being forced to seek expensive private treatment to prevent further suffering.

Recent years have seen a number of important developments on the issue. In April 2021, the British Paediatric Neurology Association published a consensus statement that recognised the lack of high-quality scientific studies and urged

“further research so that robust treatment guidelines may be formulated.”

I would be grateful if the Minister could tell us whether she is aware of that and what engagement she has had with the British Paediatric Neurology Association on the matter. Late last year, the PANS PANDAS working group, in collaboration with the BPNA and others, began the process of developing standards of care, pathways and service models, which it hopes will assist all primary and secondary clinicians. The working group has also recommended that all NHS trusts develop a comprehensive cross-speciality and multidisciplinary team provision to support patients.

On top of that important work and collaboration is the effort made by campaigners to raise awareness of this issue. I thank all campaign groups, families, Members present and members of the public who have signed petitions or written to their Member of Parliament to bring this issue out of the shadows. Having heard from Members of different parties about the disease, the research and the stories of those affected, it is important that the Minister provides clarity about the Government’s position. She confirmed in an answer to a written question earlier this year that her Department had had no discussions with NHS England on the adequacy and consistency of treatment pathways for children living with PANS and PANDAS. Could she please confirm today that the situation has changed? It is also important to know what discussions are being held in the Department and with stakeholders on the development of care pathways for children and young people living with this condition. Finally, what steps is the Department of Health and Social Care taking to ensure that children and young people living with PANS and PANDAS receive effective, patient-centred care?

We must also consider the wider issues. The Government must acknowledge their failures over 13 years to support our health and care providers up and down the country. Patients face day-long waits in A&Es, a record number of workers are off sick, and millions are on waiting lists. In fact, not only are the Government failing on the Prime Minister’s pledge to cut NHS waiting lists, but they have presided over a disastrous decade of growing waiting lists and waiting times. Children suffering from PANS and PANDAS may have to wait many months for their first NHS paediatrician appointment. As stories from the PANS PANDAS UK charity have shown, that is exactly what is happening. Christopher’s parents say:

“The soonest NHS paediatrician appointment was 8 months away, so we arranged to see a private specialist who could help us. This was the best thing we ever did. We came away with answers to what was happening and a care plan, which our GP follows. At present we are still waiting for our first NHS paediatrician appointment.”

The reality is that we need a Government who will build an NHS that is fit for the future. Labour’s first goal is to deliver an NHS that is there when people need it. This includes doing all we can to get waiting lists down and getting people treated on time, just like under the last Labour Government. We have a 10-year plan for change and modernisation, which will include one of the biggest expansions of the NHS workforce in history. We also plan to put individual care and mental health treatment—an issue that has been in the shadows for too long—at the heart of our mission.

Labour’s approach will be different, especially for children and young people. A Labour Government will treat mental health as seriously as physical health. We plan to recruit over 8,500 more mental health professionals to cut waiting times for treatment. We will provide access to specialist support in every school, and every community will have an open-access mental health hub for young people. With Labour, more care will be delivered on people’s doorsteps, out of hospital and in the community. Most importantly, we will focus on prevention and a move towards transformational new technologies. It is Labour that has a plan and a mission to build an NHS that is fit for the future and there for people when they need it.