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.

International Women’s Day

Abena Oppong-Asare Excerpts

Thursday 9th March 2023 Commons Chamber

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

It is a pleasure to follow the hon. Member for Bath (Wera Hobhouse), and I thank the right hon. Member for Basingstoke (Dame Maria Miller) for securing this debate. Let me begin by paying tribute to Lady Betty Boothroyd. She was a force of nature in this place, and a great female trailblazer to us all when, in 1992, she overturned more than 700 years of parliamentary tradition and became the first woman to be elected Speaker in this place.

I also pay tribute to some fabulous and successful women in my constituency: Deborah Frimpong is chair of Moorings Neighbourhood Forum and a formidable community activist; Councillor Averil Lekau, deputy leader of Greenwich Council, is doing great things at a local level to support women and champion their inclusion; Hend Kheiralla is the host of the Ladies of the Lake podcast, which amplifies the voices of women who have grown up, worked, and lived in Thamesmead; Debbie McFaul, is director of Crumbs Bakery, a business that truly brings in and supports the community; Karen Saunders from Greenwich Centre of Mission does a lot to support young people in our community, particularly bringing us together when two young boys, Kearne and Charlie, were murdered in my constituency; Claire Hallinan from Hawksmoor Youth Club has delivered fantastic services to young people and the wider community of Thamesmead, but has also faced considerable challenges with the state of its facilities; finally, Catherine Molnar, founder of CC Events, hosts a market in Abbey Wood and Thamesmead and has won awards for the role they play in the community.

Let me now turn to some issues closer to home. I am concerned by the rise of misogynistic influencers such as Andrew Tate, whose content sends a troubling message to men and young boys about how they treat women. I am particularly concerned that we may see a backsliding on progress that has been made in schools to tackle misogynistic attitudes, if men such as Andrew Tate are allowed to spread their hate online. Misogyny should be a hate crime, and I am proud that the Labour party has championed that. There should be no place for toxic influencers such as Andrew Tate to spread their hate and encourage violence against women and girls.

[Wera Hobhouse]

I have argued for making misogyny a hate crime for so long, and yesterday I was again given the reply that that would just be gesture politics. Does the hon. Lady agree that, if misogyny is a hate crime, we will give a powerful signal that all crimes will be investigated properly and not just brushed away, as we have seen? Making misogyny a hate crime would be a big signal, not just political gesturing.

[Abena Oppong-Asare]

The hon. Lady could not have put it better. Misogyny should be a hate crime, and I hope the Government take on board what I and the hon. Lady have said.

I am proud to chair the Labour Women’s Network, which supports women standing for election and advocates for greater female representation within our party and beyond. It is 35 years old this year. In those three and a half decades, LWN has trained thousands of women for public office, outlawed all-male panels at Labour party events, fought for tougher action on sexual harassment, made Labour’s selection process shorter and cheaper, improved parental leave arrangements for councillors, and seen the proportion of women in the parliamentary Labour party increase from 9% in 1987 to a proud 52% today.

Hundreds of women have contributed their time, skills, energy and occasional rage to our movement over those 35 years, but it would not exist at all without four women who turned their frustration into organisation: Barbara Follett, Hilary De Lyon, Barbara Roche and the late Jean Black. Every day, we are thankful for their determination to level the playing field for women. Every day, we look forward to the day when our work is no longer necessary because women have equal representation, power, agency and visibility inside the Labour party and beyond.

In the last 12 months, LWN is proud to have grown in numbers and roar. We are delighted we now have more members than ever before. We are also proud to have trained more women than ever before. Through the LWN Political School and the Jo Cox Women in Leadership Scheme, we support women to serve and lead as feminist changemakers at all levels. Our graduates include my right hon. Friends the Member for Ashton-under-Lyne (Angela Rayner) and for Leeds West (Rachel Reeves), my hon. Friends the Members for Hampstead and Kilburn (Tulip Siddiq), for Bristol West (Thangam Debbonaire), for Birmingham, Yardley (Jess Phillips), for Kingston upon Hull West and Hessle (Emma Hardy) and for Oxford East (Anneliese Dodds), and many more, as well as our councillors, police and crime commissioners, and the UK’s only woman Metro Mayor, Tracy Brabin. More than 54% of the women selected to fight seats for Labour at the next general election are also graduates of the LWN training programme. With the greatest respect to my colleagues across the Floor, I am looking forward to seeing Conservative men replaced by talented and diverse Labour women.

The architect of our training schemes is the one and only Nan Sloane, whose good advice to stand firm, take up your space and never apologise for yourself rings in the ears of many Labour women during the critical moments in their political journeys. I would also like to pay tribute to our director Claire Reynolds for her strong leadership and drive for positive change, alongside Jane Heggie and Cat Price.

Another absolute powerhouse of the Labour Women’s Network is my good friend, the right hon. Jacqui Smith, the first ever female Home Secretary. We are immensely proud that Jacqui has served on the LWN executive committee for over a decade. As she prepares to move on to fresh challenges, from NHS leadership to broadcasting to ably chairing the Jo Cox Foundation and championing its commission into civility in public life, I wanted to say a huge thank you. Thank you for showing us what resilience in public life looks like. Thank you for smashing glass ceilings and supporting others to. And thank you for never kicking down the ladder and always finding time to encourage your sisters.

As well as LWN turning 35 this year, we have another important anniversary to celebrate: 2023 marks 100 years since the first three women Labour MPs ever were elected: Susan Lawrence, Dorothy Jewson and Margaret Bondfield. Margaret, a working-class trade unionist and universal suffrage campaigner, went on to become the first ever woman Cabinet Minister and first female Privy Counsellor. Largely written out of history since, the centenary of her election provides a welcome opportunity to correct that, as well as to run commemorative events with Labour Women’s Network. I join the calls led by my hon. Friend the Member for Wirral South (Alison McGovern) to see a portrait of Margaret installed in the House of Commons where it belongs.

While the LWN has been busy sorting out women’s rights within the Labour party, the Labour party has been readying itself to sort out women’s rights within the country. Labour is ready to close the gender pay gap. Labour is ready to deliver a revolution in affordable quality childcare. Labour is ready to support women entrepreneurs. Labour is ready to help employers to support staff through the menopause. Labour is ready to end the black maternal mortality gap. Labour is ready to ensure that rapists meet justice. With due respect to my hard-working sisters across the House, Labour is ready to clear up the mess the Conservative Government have made of women’s rights. It is time for a Labour Government.

I wish all sisters across the House and beyond a happy International Women’s Day. I hope we can work together in co-operation to protect women’s rights. I end by echoing the comments from my hon. Friend the Member for Birmingham, Yardley: we need deeds, not words.

--- Later in debate ---

[Maria Caulfield]

Yes, absolutely. That is why we need a cross-Government approach. We need to work with the Home Office and the Ministry of Justice team so that we have a united voice.

[Abena Oppong-Asare]

Will the Minister give way?

[Maria Caulfield]

I will give way one more time.

[Abena Oppong-Asare]

I appreciate the Minister’s generosity. I just want to put on record the work that Sistah Space has done—particularly in relation to Valerie’s law—for victims of abuse, especially black victims. The Minister’s predecessor started to do some work with me and with Sistah Space before the change of Government. Will she please continue that work?

[Maria Caulfield]

I shall be happy to do that, and we can certainly arrange to meet following this debate.

The shadow Minister was slightly dismissive of the groundbreaking Online Safety Bill. However, my right hon. Friend the Member for Chelmsford has reported that the UN special rapporteur on violence against women and girls has described it as world- leading. Many other countries are following our progress, and, indeed, may adopt similar legislation. The Bill will tackle criminal activity online. It will protect children from harmful and inappropriate content, and it aims to stop the rise of online misogyny. Several Members have mentioned the importance of that.

Let me say something about business. The UK is now successfully including gender provision in all the free trade agreements that we have made since leaving the EU. Our trade agreements with Australia and New Zealand, for instance, contain dedicated trade and gender equality chapters. That too is groundbreaking work. As for our domestic business focus, our taskforce on women-led high- growth enterprise was established last summer. I want to pay tribute to my hon. Friend the Member for Meon Valley (Mrs Drummond) for her work in the all-party parliamentary group on women and work, not just her work in pushing science, technology, engineering and maths for women, but the high-growth sector work she is doing. If we deliver more women with ambition, we will improve growth in our economy and also improve the outcome for those women as they thrive in the workplace.

We know that childcare is an issue. That is why we have spent more than £3.5 billion over the last three years on early education entitlement, and have increased the funding for local authorities to £160 million this year, £180 million next year and £170 million thereafter, to allow them to increase their payments to local childcare providers. I recognise the challenges and the cost that childcare imposes on families, but I also know how difficult it is for the providers to sustain their business model.

Turning briefly to women’s health, I am proud that in the past year we have published the first women’s health strategy for England. The hon. Member for Vauxhall (Florence Eshalomi) mentioned that in particular, and I am very keen that we make progress in that space, especially on maternity disparities. We have appointed Dame Lesley Regan as the first women’s health ambassador to lead that work. We announced yesterday that we are investing £25 million to roll out women’s health hubs across the country, providing a one-stop shop for women’s healthcare needs.

We will also level up IVF access to same-sex couples and across the board, ensuring consistent provision across the country, which does not currently exist. The HRT prepayment certificate will be launched from 1 April, cutting the cost of HRT by hundreds of pounds. We also aim to announce our pregnancy loss certificate later this summer, so that babies born before 24 weeks can be registered—an important issue for those parents who have lost babies. The major conditions strategy will look at long-term conditions such as heart disease, musculoskeletal conditions and dementia, the leading cause of death in women, which for too long have been ignored.

Finally, I want to touch on girls’ education, which it is a top priority for us in both our international commitment—we want 12 years of quality education for every girl, which is the best way to get girls and women out of poverty—and our domestic commitments. The Prime Minister in his first speech set out his ambition to ensure that all school pupils in England study some form of maths to the age of 18. My hon. Friend the Member for Thurrock (Jackie Doyle-Price) raised the issue of teaching materials in schools; the Prime Minister yesterday committed to a review of those and we will look forward to what that shows.

We need to get more women and girls into science, because, as my right hon. Friend the Member for Basingstoke said, despite getting more girls into STEM A-levels and on to undergraduate courses, we only see women making up 29.4% of the STEM workforce. That is why we are running our STEM Returners pilot; there are 75,000 people, mainly women, with experience and qualifications in STEM who are not working in the sector and who we want to see return to practice.

I hope that that showcases some of the work we are doing across the board. There are many challenges—we do not deny or shirk that fact—but we are making significant progress. In particular, domestically, on violence against women and girls, I hope that this time next year we will have a better story to tell.