PANS and PANDAS

Selaine Saxby Excerpts

Tuesday 12th September 2023 Westminster Hall

[Selaine Saxby (North Devon) (Con)]

It is a pleasure to serve under your chairmanship, Mr Dowd. I thank the hon. Member for North East Fife (Wendy Chamberlain) for bringing this important debate to the House.

As already detailed, PANS and PANDAS can change a family’s life overnight. That is exactly what happened to my constituent Neil Gilson and his family. His son Jack was 18 months old when he caught tonsilitis, and an otherwise innocuous childhood illness turned their life upside down. Jack went from being a normal and happy little boy to one who was aggressive and anxious. He struggled playing with his friends, would go days without wanting to leave the house, and would not speak a word for long periods of time. His illness was not limited to his mental health but affected his physical health, too; he lost his fingernails and toenails and had very little energy. Neil describes it as,

“it was like there was no-one there”

some days—far from normal behaviour for a young boy.

For years, Neil and his wife sought a diagnosis. Various behaviours were put down to Tourette’s syndrome, an allergy or even just normal behaviour for his age, but one morning, Neil heard a news story about PANS and PANDAS that matched Jack completely. His doctor had never heard of the condition, but after an appointment with a specialist and a course of antibiotics, they had their son back in just two weeks. That is what makes PANS and PANDAS so shocking. It is an inflammation of the brain that can be quickly and effectively treated with a course of antibiotics, but it is so little known that it is impossible to say how many parents’ concerns are being put down to other causes simply because their GP has never heard of PANS and PANDAS. Will the Minister bring in training and guidance, so that obtaining a diagnosis is no longer a matter of chance, and work to raise awareness among healthcare professionals and those involved in childcare, so that families do not have to go through years of anxiety and all the problems that come with an unwell child.

I pay tribute to Neil’s fantastic work in raising both awareness and money for PANS and PANDAS. Since 2019, he has swum marathon distances in Loch Lubnaig and in 2021 became the first person to swim across the Bristol channel from Swansea to Ilfracombe. He attempted to swim the 70 km length of Lake Geneva this summer; he was 56 km in when he developed hypothermia and had to be pulled out by his team, but he has vowed to try again next year. Regardless of the distance, Neil has raised a fantastic amount of money and awareness and will change the lives of many children like his son Jack.

I hope that us coming together today and highlighting the cases in our constituencies will in itself help to raise awareness, so that early access to those antibiotics is more widely available to children who may have PANS and PANDAS.

Hormone Pregnancy Tests

Selaine Saxby Excerpts

Thursday 7th September 2023 Commons Chamber

[Selaine Saxby (North Devon) (Con)]

I thank the hon. Member for Bolton South East (Yasmin Qureshi) for securing this important debate and for her outstanding and ongoing work on the issue.

I am here today on behalf of my constituent Helen Barham, who since her birth has suffered from the brain disorder agenesis of the corpus callosum, hydrocephalus, damage to her skeletal system, and a brain haemorrhage at only 12 weeks, leading to epilepsy. She wears callipers and boots due to her feet deformities. She has had to have a number of major surgeries throughout her lifetime, including spinal surgery and a total hysterectomy. Despite all that, she still awaits compensation, which would allow her a personal carer and more comfort than she currently lives in.

Following Helen’s brain haemorrhage at 12 weeks in 1975, her mother Diane was told, in Diane’s words, that Helen would be spastic, mentally retarded, partially sighted and that, if the doctor was her, they would go home and forget about Helen, as she would be nothing but a cabbage. Diane and Helen have defied that awful prognosis. Helen has an active social life, with swimming, discos and holidays to Butlins.

Over the last almost 50 years, Diane has tirelessly kept fighting for Helen to have the best quality of life possible. However, ultimately the opportunity for a normal and healthy life was taken from Helen while she was still in the womb, because in 1974, Diane was given two pills following a missed period. It was only when Helen was three years old that a doctor from Great Ormond Street Hospital informed Diane that it was likely that those two Primodos pills were the cause of Helen’s disabilities.

Although Diane has dedicated much of her life to Helen’s care, as she has said, it has often come at a cost to her other children, her marriage, and her relationship with her parents. She is getting older and less able to look after Helen. All Diane asks is for Helen to receive compensation so that she can have someone to care for her all the time. Helen is currently in hospital after experiencing yet another complication following recent surgery to remove her gall bladder. Doctors were unable to remove Helen’s gall bladder fully and she is still struggling on the ward.

I welcome the Government’s apology to families by the former Health Secretary on behalf of the healthcare system, but it is financial assistance that families like Diane and Helen’s need. As has already been said, the Independent Medicines and Medical Devices Safety review led by Baroness Cumberlege found that the drug should have been removed from the market in 1967, and that both the state and the manufacturer had an ethical responsibility to fund a financial scheme for those harmed to help them with their care costs. Having been born in 1974, Helen certainly falls into that camp.

The Government are already working towards redress systems for valproate and vaginal mesh, as advised by the Independent Medicines and Medical Devices Safety review, but there has been no progress on a scheme for Primodos families. The 2018 systematic review of historical human studies by Professor Carl Heneghan clearly demonstrated that Primodos had a clear association with different forms of malformations, including musculo- skeletal, neurological and neurogenetical forms, all of which have affected Helen.

Modern science is also paving the way. Previously it was impossible to prove a direct link with human studies, as that would require testing the drug on pregnant women, but Professor Neil Vargesson has found similar outcomes to those for children born following their mothers being prescribed Primodos when testing the drug on zebrafish, chosen for their genetic similarity to humans. A new study has used chicken embryos and human cell lines, and even low doses produce developmental abnormalities. The full results are due later this year. Baroness Cumberlege felt that there was enough evidence of a link between Primodos and complications from birth for financial support in February 2018. Since then, the evidence has only grown.

I would like to reiterate to the Minister today how much difference the financial redress recommended by the IMMDS would make to Helen and Diane’s quality of life. Diane trusted her NHS doctor and our medical system, and now we need to support her and her family as they continue to face Helen’s complications together.

World Down Syndrome Day

Selaine Saxby Excerpts

Thursday 23rd March 2023 Commons Chamber

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

I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing the debate and for all his hard work over the years campaigning and supporting people with Down syndrome. I, too, attended the reception on the Terrace earlier this week. I met lots of people from around the country, some with Down syndrome, but with campaigners, supporters, friends and family. In particular, I pay tribute to the National Down Syndrome Policy Group and its founders, Ken and Rachael Ross, who are in the Public Gallery.

I had the pleasure of meeting the advisory team this morning in No. 10, where we held a roundtable with young people with Down syndrome. They certainly put my feet to the fire with their questions and the progress they want to see. They have joined us this afternoon, too. Florence, Harshi, Ed, Max, Fionn, Tommy, Charlotte, James, Heidi and Rula asked extremely difficult questions, and I have promised to update them on progress. That just shows the strength of feeling and the range of support from people around the country.

[Selaine Saxby (North Devon) (Con)]

As we celebrate World Down Syndrome Day and the achievement of those who suffer with Down syndrome, will the Minister join me in congratulating my constituent Jade Kingdom, who is now a Guinness world record holder as the first person with Down syndrome to complete a sprint triathlon. She overcame her health conditions to achieve this and raised £30,000 for the North Devon Hospice.

[Maria Caulfield]

That is a fantastic achievement, and I congratulate Jade on her amazing ability. I wish I could do something similar.

Tuesday marked the 12th World Down Syndrome Day. My right hon. Friend the Member for North Somerset was not able to join us on the day because he was at the UN in New York to showcase the work done in this Parliament. Many countries are now looking to us as they try to do something similar. He has not only changed the lives of people with Down syndrome in this country; he is making a difference globally, too.

As part of the World Down Syndrome Day celebrations, I am wearing my different socks to showcase the three strands of chromosome 21, which apparently look like socks and are the cause of Down syndrome. The socks highlight Down syndrome and the amazing contribution that the incredible people with Down syndrome make to our communities and society.

The hon. Member for Glasgow South West (Chris Stephens) spoke about his constituent Danielle, her son Steven and the very real issues of diagnostic overshadowing. My hon. Friend the Member for Stoke-on-Trent Central (Jo Gideon) spoke about her uncle Donald and how difficult it was for her family. She also spoke about what life was like in the past for people with Down syndrome.

My hon. Friend the Member for Ashfield (Lee Anderson) spoke about Jossie, who I am sure has a wonderful future ahead of her. My hon. Friend the Member for Southend West (Anna Firth) spoke about David Stanley and the Music Man team, who cheer us up with their wonderful performances.

My hon. Friend the Member for Hendon (Dr Offord) spoke about the dancing ability of his constituent Michael. He also spoke about Liam. I am a “Coronation Street” fan, and Liam is not currently at Roy’s Rolls, but I look forward to his next episodes because he has a good sense of humour.

It is important to celebrate people with Down syndrome and to recognise the barriers they face. It was wonderful to see the actor James Martin win an Oscar for his brilliant performance, but we must not forget why we are here today.

The Down Syndrome Act became law in April 2022, and I will now update the House on its progress. My right hon. Friend the Member for North Somerset and the Education Secretary, my right hon. Friend the Member for Chichester (Gillian Keegan), ensured the passage of the Act. We all have a responsibility to make sure it is not the end of the story by implementing the Act and getting the guidance out.

At Downing Street this morning, the young people asked when we will see those changes. We will deliver guidance for professionals working in health, social care, education and housing, to try to bring together support for people with Down syndrome. The guidance will set out tangible, practical steps that organisations should take to meet the needs of people with Down syndrome. It will raise awareness of the specific needs of people with Down syndrome, and it will bring them together with the relevant authorities to make support more easily accessible.

We launched our national call for evidence in July 2022, in the spirit of “With Us Not For Us,” and we heard from hundreds of people across the country. We had more than 1,000 responses on the needs and asks of the various communities. I thank everyone who responded or participated in the focus groups. It is thanks to them that we received so much evidence, which officials are now going through to analyse the data. We will shortly provide a summary of the key findings.

It is essential that people’s lived experience informs the development of the guidance, and that people with Down syndrome are involved at every stage. We will shortly set up a working group to oversee the development of the guidance. Once drafted, the guidance will be subject to further public consultation to make sure we have it absolutely right.

My right hon. Friend the Member for North Somerset asked some practical questions about the guidance, and we recognise that the issues and the services supporting people with Down syndrome sometimes overlap with the issues and the services supporting other people with learning disabilities and learning difficulties, which we need to consider. But I am absolutely clear that this guidance is about people with Down syndrome, because we want to help as many people as possible, to make it feasible for relevant authorities to implement this guidance in practice and to ensure that there will be oversight of it in Parliament.

We are committed to considering the inclusion of employment and other public services through the call for evidence. We heard that best practice in supporting employment and benefits services is also going to be included in the guidance. We know that employment can have a significant benefit in terms of living independently and participating fully. That is why it is so important that the Minister for Disabled People, Health and Work, my hon. Friend the Member for Corby (Tom Pursglove), has sat through this afternoon’s debate. He was also at the reception earlier in the week, along with the Education Secretary. This is a cross-Government approach, and we cannot act just with one Department on its own. That shows that the full strength of the Government is behind these changes. We will also be looking at transport and leisure facilities, and removing some of the barriers to enable people with Down syndrome to be able to fully participate in the activities that they want to do. We will be working with other Departments to consider how to best incorporate those areas into the guidance.

To ensure that the guidance is implemented in practice, every integrated care board will be required to have a named lead for Down syndrome. As my right hon. Friend the Member for North Somerset said, we want there to be a clear person accountable. The named lead will be responsible for ensuring that the Down Syndrome Act is implemented in practice. NHS England is currently developing its statutory guidance for ICBs, including for the Down syndrome lead role. Having a named lead for Down syndrome will help to ensure that the specific needs of people with Down syndrome are considered when services are designed and commissioned. One speaker this afternoon said that that would open the floodgates for change, but we absolutely need change to happen, so I do not necessarily have a problem with that. My right hon. Friend also touched on the school census. I wish to reassure him that although we have missed the deadline for 2023-24, we are looking at 2024-25 for this. We will be discussing that with the Education Secretary, because we recognise the importance of the school census and gathering that information.

I thank everyone who has taken part in the debate. It has been a consensual debate and it shows Parliament at its best when we work together to deal with these challenges. I pay tribute to the families, carers, organisations and professionals who work tirelessly on behalf of people with Down syndrome, but I pay a particular tribute to those with Down syndrome themselves. It is indeed “With Us Not For Us”—I absolutely get that message. That is why we are here today. I also want to pay tribute to the officials at the Department of Health and Social Care—David Nuttall and his team—who have got that message loudly too and are working with the community to make sure that the Act and the guidance address their needs. Next year, I am sure that we will update the House further on the progress that has been made.

Oral Answers to Questions

Selaine Saxby Excerpts

Tuesday 7th March 2023 Commons Chamber

[Selaine Saxby (North Devon) (Con)]

Does my right hon. Friend agree that community-based drop-in mental health services such as the Link centres in North Devon are vital to remote rural communities? Will he urge Devon County Council not only to continue those services but to improve and extend the model?

[Steve Barclay]

It is for schemes such as those that my hon. Friend highlights that we are investing a further £2.3 billion a year in mental health services, and that in turn is facilitating an extra 2 million patients accessing NHS-funded mental health support.

Oral Answers to Questions

Selaine Saxby Excerpts

Thursday 9th February 2023 Commons Chamber

[Nigel Huddleston]

Protecting UK workers’ rights remains a priority for this Government. The UK will continue to meet its obligations under the International Labour Organisation and to advocate for the highest labour standards and working conditions globally, and that includes in our discussions on free trade agreements. In the UK GCC FTA, we will retain the UK’s high standards and protections, including the right to regulate labour, and we will also seek assurances that labour rights are not reduced to gain a trade advantage. We have these discussions in this and other Departments, and we are always happy to have frank conversations with our friends.

[Selaine Saxby (North Devon) (Con)]

16. What steps her Department is taking to help increase trade opportunities for the green industrial sector.

[The Parliamentary Under-Secretary of State for Business and Trade (Kevin Hollinrake)]

Green trade is a foundational building block of sustainable growth, helping to protect our environment and our energy security, and future-proof UK jobs. In the two years to October 2022, the Government have supported £20 billion of net zero-related inward investment to help grow our green industries.

[Selaine Saxby]

Does my hon. Friend agree that, if we drag our feet developing new renewable energy industries, foreign investment will go overseas?

[Kevin Hollinrake]

I agree with my hon. Friend and thank her for her incredible work on the Celtic sea initiative. I attended her reception in Parliament, which was very well attended indeed and very optimistic about the potential for the Celtic sea.

We know that the net zero transition will create new industries worth around $10 trillion to the global economy by 2050. We recognise that the international landscape is becoming increasingly competitive as a result, but we are not dragging our feet. Securing inward investment to the UK’s green economy is a top priority for the Government, and the Department will be working closely with the Department for Energy Security and Net Zero, UK Export Finance and the Office for Investment, using all the levers at our disposal to promote the UK offer overseas.