Children with Serious Neurological Conditions

James Asser Excerpts

Thursday 20th November 2025 Commons Chamber

[James Asser (West Ham and Beckton) (Lab)]

I am pleased to have secured this Adjournment debate on the support available to children—and, crucially, their families —living with serious neurological conditions. I applied for this debate after hearing the moving testimony of my constituent, Shelina, a mother who, like so many parents in similar circumstances, never expected to find herself navigating the complex and overwhelming world that confronted her when her daughter Tafida fell seriously ill.

Following Tafida’s diagnosis, Shelina not only became an advocate for her own child, but went on to support others facing similar paths. She founded the Tafida Raqeeb Foundation, a charity dedicated to helping families understand treatment options, access specialist knowledge and feel supported at a time when many can feel at their most isolated. The foundation now supports families both here and abroad, and the insights it has gathered are invaluable in helping to shape thoughtful and compassionate reform.

Shelina’s story, sadly, is not unique. Each year, thousands of children in the UK are diagnosed with life-limiting neurological conditions.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I thank my hon. Friend for securing the debate. Today, on Carers Rights Day, will my hon. Friend join me, as the parent of a child with a neurological condition, in paying tribute to all carers and charities for their work in supporting families like the family in his constituency?

[James Asser]

I am very happy to join my hon. Friend in that. I certainly know, and I think the House knows, his expertise in this area and the knowledge he brings to the House. That is something I will touch on further in a little while.

Some conditions present at birth and others emerge unexpectedly in early childhood. What unites the families is not only the complexity of the diagnosis, but the emotional, financial and practical challenges that follow. When faced with these circumstances, support is not an optional extra; it is the difference between families coping or reaching breaking point. Today, I want to focus on areas where the Government can continue to make a tangible difference, while also reflecting on several principles identified by families and organisations working closely in this space.

The first is access to high-quality information and specialist expertise. In the early weeks and months after a child’s diagnosis, many parents simply do not know where to turn. Conditions may be so rare that even highly experienced clinicians have encountered only a few cases. Understandably, families seek second opinions, sometimes internationally, in their search for clarity and reassurance. That is why proposals for more consistent access to second opinions, including clarity on how families can request them and where they may come from, are so important. Ensuring that such opinions are available promptly and from appropriately qualified clinicians would help prevent misunderstandings and reduce distress at an already emotional time. Similarly, early involvement of mediation and clinical ethics support can help families and clinicians work through complex decisions collaboratively, rather than feeling pushed towards formal disputes. When available at the right moment, these mechanisms can preserve trust and keep conversations centred on the child’s best interests.

Families have also highlighted the importance of having clear and safe hospital transfer options. Where another suitably qualified hospital, whether in the UK or abroad, is willing to accept a child, and where the clinical risks are manageable, families understandably value the reassurance that such a transfer could be facilitated. Greater clarity on how transfer decisions are made would help families feel respected as partners in their child’s care. I would be grateful if the Minister outlined, when she replies, what further steps might be taken to strengthen these early support mechanisms and to ensure that families across the country have timely, consistent access to the specialist guidance they need.

The second area where the Government can make a difference is in emotional and practical support for families. Caring for a child with a serious neurological condition frequently requires round-the-clock care. Parents become experts in medical equipment, emergency responses, symptom patterns and complex medication schedules. This can take an enormous emotional toll. Consistent access to counselling, respite breaks, community nursing and psychological support can make an extraordinary difference. However, we know that this provision can vary. Some families receive exemplary support, while others find themselves waiting months or navigating multiple agencies before help arrives. Strengthening those forms of support so that they are reliable, accessible and sensitive to the pressures that families face would greatly reduce the emotional and financial burden that parents often shoulder.

The third area is ensuring that public services are co-ordinated, compassionate and connected. Many parents describe the system as fragmented, not through lack of dedication from professionals but because structures do not always align. Families may find themselves repeating their child’s history multiple times, facing delays in equipment provision, or juggling unco-ordinated appointments. For children with complex neurological needs, health, education and social care are deeply interconnected. A more joined-up approach can relieve pressure and help ensure children receive the right support at the right moment.

[Mark Sewards (Leeds South West and Morley) (Lab)]

My hon. Friend is making an excellent argument for more support for children and families in this position. A family in my constituency wrote to me about their granddaughter who has Huntingdon’s disease. She is 10, and she desperately needs an education, health and care plan so that she can get to the right special educational needs and disabilities school next year. However, the family found that there are not enough educational psychologists to give referrals, and time is running out. Does my hon. Friend agree that we need to prioritise support for people in that position to get them the education and support they deserve as quickly as possible?

--- Later in debate ---

[James Asser]

My hon. Friend makes an excellent point. That is the thrust of this issue. There are multiple agencies involved, but if one is failing in an area or there is a gap, it creates huge problems. It is about being parent-sensitive and child-sensitive, looking at where the gaps are and ensuring that we have the necessary facilities, support and access available speedily where they are needed.

[Adam Jogee (Newcastle-under-Lyme) (Lab)]

My hon. Friend is making an excellent speech. May I put to him the importance of communication? He has just touched on the many cases of families going to a million and one different agencies to seek support. More often than not, when there is a need for those agencies to speak to each other and then get back to the families who are trying to support their children, those agencies are missing in action. Improved communication across the piece has never been needed more than now.

[James Asser]

My hon. Friend makes an important point. Communications are a key part of the point I was making about interconnectivity. Parents are required to repeat the diagnosis so many times. Agencies need to be talking to each other and sharing information to make life easier for the families and carers of children.

A joined-up approach can help relieve the pressure. Within that, it is vital that parents—and grandparents, where that is the case—are recognised as genuine partners in decisions about their child’s care. Their experience, insights and wishes should carry appropriate weight from the outset, and reflect the deep understanding they hold of their child’s day-to-day needs. In addition, families have emphasised the importance of improving access to paediatric neurorehabilitation, which is uneven across the country.

For children with long-term neurological conditions, timely access to specialist rehabilitation can significantly improve outcomes, independence and quality of life. Reducing the overall burden on families, emotionally, practically and financially, should remain a guiding principle. Strengthening the pathways for second opinions, mediation, ethics involvement, transfer options and rehabilitation would all help to support families during their most vulnerable moments.

I want to recognise the work of the Tafida Raqeeb Foundation and similar organisations. Their experience with families in the most difficult circumstances offers valuable insight, and their contributions can help inform the foundations of a more supportive framework, one that ensures parental involvement, early resolution of disputes, safe transfer options and improved rehabilitation, all centred on the welfare of the child—much as my hon. Friend the Member for Bexleyheath and Crayford (Daniel Francis) suggested when he spoke about involving families.

Finally, I pay tribute to the extraordinary resilience of the families: the parents who become carers overnight; the siblings who grow up with remarkable empathy; and, above all, the children themselves, who show courage that humbles us all. Their strength inspires us, but it also reminds us that our systems must match their resilience with compassion, clarity and consistency.

We do not require radical restructuring to make progress; what is needed is better co-ordination, commitment and recognition that caring for children with serious neurological conditions is a whole-family, whole-system challenge. In honour of the children we have lost, in support of those still fighting and in solidarity with every family navigating these profound challenges, I believe we can continue to do better.

Regulation and Inspection of Funeral Services

James Asser Excerpts

Monday 27th October 2025 Commons Chamber

[Simon Hoare]

I agree with my hon. Friend. It is a great strength to be a member of the trade association, because it gives an imprimatur of quality to the families choosing a funeral director, just as customers would choose a CORGI-registered boiler fitter or FENSA for windows. As the trade associations themselves have made clear, however, they can only exhort. They can help people by advising on what best practice looks and feels like, what a good customer experience is and so forth, but people can still trade as a funeral director without being a member of the trade association, and if the trade association kicks them out, they can still trade as a funeral director, because being a funeral director is not concomitant on being a member of the trade association. So there is all this opt-in, opt-out, and of course the best will always join the professional bodies that give them the imprimatur of quality, whereas it is the dodgy geezers—the people trying to do it on the fly—who will not, and they will always be part of the bottom end of the market.

[James Asser (West Ham and Beckton) (Lab)]

I have in my constituency a very well-established funeral director that operates in a large area and has been around since the Victorian era, and many other Members will have similar firms in their areas. The hon. Gentleman has talked about the trade bodies. Does he agree that such long-established family firms have a role to play in any future regulation as their experience and respect will add to the weight of the regulation?

[Simon Hoare]

I entirely agree, and I make this point again for the Minister’s benefit: he will not be trying to push water uphill in pushing for a regulatory and/or licensing regime. The good guys and girls want it to happen because it would give certainty.

I can share with the House—I hope it is not breaching a confidence—that when I was dealing with a high-profile incident, which I cannot reference per se as it is sub judice, one of the concerns we wrestled with was what would happen if public confidence collapsed so much that our hospital morgues became effectively logjammed. People would not be prepared to release their loved one to a funeral director because they had lost all faith in the sector as a whole. That would be a deeply worrying situation for anybody, and that is why the trade bodies are pushing so hard and so energetically to deploy their expertise as best they can in the current circumstances, but also to push Government to agree.

NHS 10-Year Plan

James Asser Excerpts

Thursday 3rd July 2025 Commons Chamber

[Wes Streeting]

I can absolutely give my hon. Friend that reassurance. It is about time that we design care around the patient, rather than ask the patient to do the running around on behalf of the NHS. That will be a big shift in practice and culture. Of course, as my hon. Friend says, it is only thanks to the decisions taken by the Chancellor that we are able to match the reform and ambition of this plan with the investment we need. That is why I was delighted to be joined not just by the Prime Minister, but by my right hon. Friend the Chancellor this morning in Stratford to kick off the 10-year plan—not least because she is the one who pays the bills, and we are very grateful to her for it.

[James Asser (West Ham and Beckton) (Lab)]

One of the issues with the health service that my constituents most often ask me about is the struggle to get basic appointments. That is leading people to the hospital, which is unable to cope with the sheer numbers, and in a populous, fast-growing borough, that is creating unsustainable pressure. As such, I welcome my right hon. Friend’s remarks about the move from hospital to community. Does he agree that getting primary care right is at the centre of getting the NHS right, and can he assure my constituents that they will get what they want: appointments when they need them, as they need them, in their local community?

[Wes Streeting]

I am very grateful to my hon. Friend— I know his constituency well, and he has been a powerful voice for his constituents since he arrived in this place. He is absolutely right that we need good general practice and accessible neighbourhood health services that are available to everyone, especially in areas of high need and health inequalities, as we see in the London borough of Newham. I hope his constituents really feel the impact of this plan as we roll it out during this Parliament and across the next decade.

Oral Answers to Questions

James Asser Excerpts

Tuesday 17th June 2025 Commons Chamber

[Wes Streeting]

Fiscal decisions and spending are matters for my right hon. Friend the Chancellor, but let me reassure the hon. Gentleman of two things. First, the way in which the taxpayers of this country were ripped off during a national emergency was a total disgrace, and this Government are determined to get our money back and reinvest it in frontline services, where it should always have been. Secondly, I can reassure him that, so long as there is a Labour Government here in Westminster, Scotland will continue to benefit from the investment it needs to sort out its public services. Now it just needs a Labour Government in Scotland to spend that money wisely.

[James Asser (West Ham and Beckton) (Lab)]

8. What steps he is taking to help reduce waiting times in A&E departments.

[The Secretary of State for Health and Social Care (Wes Streeting)]

This Government are committed to fixing the NHS and reducing A&E waiting times. Our new urgent and emergency care plan is backed by nearly £400 million of investment to deliver new urgent treatment centres, mental health assessment centres and almost 400 new ambulances. Alongside that investment, we are reforming urgent and emergency care so that more patients are treated at the scene or in their homes where appropriate, which is better for them and will help to unclog A&E departments. Lots has been done, but there is much more to do.

[James Asser]

The Minister for Secondary Care recently visited my constituency and saw the pressures that Newham hospital A&E was under. That is partly due to the pressures left by the previous Conservative Government, and partly due to capacity issues resulting from a massive growth in population in the borough. Further pressures will come as we regenerate the massive areas of brownfield site in the Royal Docks. Can the Secretary of State reassure my constituents that, as well as the excellent work being done on day-to-day capacity, we will be looking at infrastructure over the longer term to make sure that we are not only dealing with the growth that we have had, but future-proofing for the population growth to come?

[Wes Streeting]

I know that my hon. Friend the Minister for Secondary Care enjoyed her visit, and I thank the staff at Newham hospital for the work they do, which also benefits my constituents. We need to make sure that we are supporting hospitals across our country to meet need, because we are part of a wider ecosystem—I noticed that that point was also powerfully made by the hon. Member for Romford (Andrew Rosindell) in his question. My hon. Friend the Member for West Ham and Beckton (James Asser) is right to raise increasing demand and pressures, which is why we will shortly publish our 10-year plan for health. I am happy to report that Whipps Cross and Newham hospitals have also been provisionally allocated £28 million this year to improve buildings and estates.

Covid: Fifth Anniversary

James Asser Excerpts

Thursday 12th June 2025 Commons Chamber

[James Asser (West Ham and Beckton) (Lab)]

I bet to move,

That this House has considered the fifth anniversary of the covid-19 pandemic.

I start by thanking the hon. Member for Harrow East (Bob Blackman) and the Backbench Business Committee for granting my request for this debate. I also thank all hon. Members who supported my application. I approached the Committee because it is important that we mark the fifth anniversary of the pandemic.

It was an extraordinary time in our lives and for the nation. In some ways it feels like a dream. Five years on, it seems hard to believe that we actually went through such a period of disruption. The impact has been huge and long-lasting, even if we do not acknowledge that on a day-to-day basis.

I should say that I do not intend to talk about, and neither do I hope this debate becomes about, the origins of the pandemic, the way it was handled, personal protective equipment, the then Government, or any of the inquiries or legalities. There will be plenty of time for those discussions, and no doubt this House will have plenty of opportunities to talk about those things in future. I want this debate to be about people and communities.

We lost a lot of people to covid, and the impact on those who lost loved ones was significant. It cut across communities, ages and faiths. Most of us will have had covid. All of us will know someone who has been affected. Many of us will know people who died and will understand the impact of the grief and loss combined with the shock of a pandemic. There were funerals unattended and people who had to die alone. As the current Prime Minister said at the time,

“People are frightened by the strangeness, anxious about what will happen next. And we have to remember that every number is a family shaken to its foundation.”

It is not just those we lost whom we must remember. The country kept going through the incredible hard work and bravery of our frontline workforce, but it also carried on because of schools, community groups, places of worship, volunteers and people just being good neighbours. Without them, we could not have kept going. I know from experience in my community that the work of volunteers was vital. They put their community first, above and beyond their own needs, as did our frontline workers, from those in the NHS and care homes to bin men, social workers, the emergency services and transport workers, to name just a few. There is a danger as we get into the politics and the legalities that we will forget the many workers on whom we quietly relied, or that we will allow their contribution to be underappreciated. They deserve to be recognised and for their efforts to be applauded.

During the lockdowns I was a member of the Newham council cabinet, with responsibility for much of the public realm, including waste and recycling. I remember the posters attached to the wheelie bins thanking the bin men for their work and for coming out during the lockdown to clear rubbish. In normal times we perhaps do not think about the people who collect our bins, other than to curse a little if it is an early morning collection or mildly panic on realising that it is bin day and the bins have not been put out. In this time of stress, the role they played was emblematic of so many of our key workers, and it was great to see residents sharing their appreciation.

Across Newham, over 650 residents volunteered their time with the council’s #HelpNewham initiative to support the borough’s most vulnerable. There were also more than 500 covid champions, who helped to distribute information and advice to their communities during the pandemic to keep people informed. Those are the people who made such a difference and provided vital support to the local council at a time when it was stretched by delivering vital services in a borough with a high number of vulnerable people and a high rate of infection and casualties.

We often talk about the numbers, but it is important that we understand the sheer scale of the impact that the pandemic had on our communities. My borough lost more than 1,000 people to covid. It was one of the worst-hit places in the country, and at the beginning of the pandemic it was the worst-affected place in the UK. It is extremely easy to lose sight of the impact when we talk about the numbers, and the larger the number, the greater the danger that it becomes a statistic and the individuals behind it are lost. Behind those numbers are real people, real stories and real lives, and we must never forget that. That is backed up with stories of compassion and kindness from families, friends and NHS doctors and nurses. It is vital we find ways for their names and faces to be remembered, and for their families to gain comfort from that memory.

The inspiration for this debate came from my staff during a visit to Plaistow Park. It is there that Newham has created its permanent memorial to covid. In the middle of the crisis, I was certain that we would need to find a way to mark it for local people. It was clear from the scale of the pandemic and the lives lost that there would be national and regional memorials. Indeed, Newham hosts the London blossom garden, a memorial for London, in the Olympic park, which is in the constituency of my neighbour and hon. Friend the Member for Stratford and Bow (Uma Kumaran). The national memorial wall has also offered much to many people.

Given the impact on Newham, however, we needed something dedicated to our local people. A monolithic memorial felt wrong. This was not a war memorial; it needed to be something that reflected the nature of the people who were impacted. It needed to be a memorial for all—young or old, single or with a family, religious or not. It had to be a space for everyone. What was designed was a memorial garden in one of our parks, created with the help of our parks team, landscape architects and local artist Matt Ponting. Importantly, it was created in consultation and discussion with local people, and designed to work for all in our community. It is a landscaped area in a previously little-used part of Plaistow Park in my constituency, in the centre of our borough, with trees and flowers, seating and its own paths and works of art, in which people can sit quietly, pray, reflect or enjoy it with others. On the day of its opening in 2023, more than 100 local people turned out, including one local resident who had lost his father. Still grieving the loss, his appreciation for having a place that he could visit, and that meant that his father and those who died had not been forgotten, is something that struck me and that I remember vividly.

All politicians hope that they will have a legacy, and we all have ideas of what we might like to achieve. I did when I started as a councillor, and I even realised some of them. But if I had to leave just one thing behind me, I think it would be that garden. Sadly, there is no database of memorials, and no online guide to what has been put in place, but we will all know of something that has been done to recognise the impact of covid. We need to create some form of guide or register so we can ensure that such memorials are not lost for the future. We know that good work has been done.

Researching the background to this debate, I came across some wonderful examples, such as memorial gardens in Telford, Oldham and Enfield, memorial woodlands in Wokingham and Hornchurch, and a memorial mosaic in Barrow. I hope we will hear more examples from hon. Members this afternoon. These spaces are vital, not just for now, but for the generations that come after us. We cannot allow the legacy of the pandemic to be the preserve of documentaries, textbooks and history lessons. It should be a legacy rooted in our communities, celebrating the sacrifices and contributions that were made and remembering those who are no longer with us—not as the statistics they are recorded by, but by the lives they lived.

This year is the 85th anniversary of the beginning of the blitz, which started in my constituency. It was in the east end of London that the phrase “blitz spirit”, which we still use, emerged—a spirit of standing firm and working together as a community. We saw in 2020 how strongly that still existed and, when the chips were down, the strength of our communities. Perhaps we should now be talking about pandemic spirit, and talking with pride about how that spirit shone through across our communities.

Today, I hope that we can contribute to that spirit in this House. I hope the debate will provide comfort for those who are remembering loved ones. I hope it helps to ensure that all who went out to work to keep things going in those difficult days get their recognition. I hope it helps to shine a light on the army of volunteers who stepped up and helped when it was needed most.

[Several hon. Members rose—]

--- Later in debate ---

[James Asser]

In the few seconds I have, I just want to say that I thought it was important to have this debate so that the fifth anniversary did not pass without being marked. It is clear that we have merely touched the surface of what could be said, but I thank hon. Members across the House who have contributed. Much has been said, and there is clearly much more to say. I put on record my thanks to my constituents for all they have done. I hope that all the families and all those affected who have been watching will feel that this debate has been important in recognising the past five years, acknowledging that there is more to be said and that we will talk further about it.

Question put and agreed to.

Resolved,

That this House has considered the fifth anniversary of the covid-19 pandemic.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

I thank all Members, and I especially thank the Minister for being so swift at the Dispatch Box.

HIV Testing Week

James Asser Excerpts

Thursday 13th February 2025 Westminster Hall

[James Asser (West Ham and Beckton) (Lab)]

It is a pleasure to see you in the Chair, Dr Allin-Khan. I thank the right hon. Member for Dumfriesshire, Clydesdale and Tweeddale (David Mundell) for securing the debate and for all the work he does on this; it is very much appreciated. We have just had another successful National HIV Testing Week, and I join others in paying tribute to the Prime Minister for his participation. That will be a huge boost in awareness-raising. I also thank the Terrence Higgins Trust for its work on this, and for focusing us on the 2030 goal.

My own campaigning journey started at university more than 30 years ago as we worked to fight the stigma around HIV in what was a very different era, as my hon. Friend the Member for Sittingbourne and Sheppey (Kevin McKenna) so effectively outlined. Mine—ours—is the generation that came out just after the one that had lost so many to AIDS, into a world before effective treatment where so many were still losing their lives. We were, however, on the cusp of the era that now knows living with HIV to be living with a long-term condition. Yes, progress is often fraught with challenges and difficulties, but if we test people, find people who were previously undiagnosed and treat them, they will have a normal life expectancy. How things have changed.

The magnitude of the 2030 goal should never be lost on us. To be a country that ends the onward transmission of HIV is a massive task. Think about how it will change dating and relationships in this country, and think about how it might change how we treat each other. To think that we could be the first country in the world to make that happen—that would have seemed like a miracle to all my friends when I turned 18. It would show British excellence on a global stage, and it would be social justice that was impact-aligned. If we were to achieve such a remarkable goal, it would be the first time we had stopped the onward transmission of a virus without a vaccine and without a cure. We cannot afford to fail.

There is a lot that we should be encouraged by. The proposal has cross-party support, and that is welcome. I pay tribute to the previous Government, which did much to enable opt-out testing in A&Es across the country. We are all delighted to see the new Government back that up with the £27 million announced in December, which will enable this highly effective programme to take place in 90 A&Es from this summer. However, we must acknowledge that our friends in the voluntary sector must continue to reach targets with fewer and fewer resources. We all know the pressures they are under.

Compare the infrastructure for this National HIV Testing Week with what was available when Labour last left office. At that time, the Department of Health and Social Care was making available £4 million for HIV prevention in our communities. Today, the Terrence Higgins Trust and its 30 local partners run everything we see for National HIV Testing Week with just £1.1 million a year. That follows a period in which we have had a cost of living crisis and double-digit inflation. Those are impressive efforts, but they are, ultimately, not sustainable over the longer term.

It is welcome that the Department of Health and Social Care website states that the programme will be commissioned for a further two-year period, but the budget is tight, the pressures are there and we need more than two years. I understand that that is the situation that my hon. Friend the Minister has inherited, but as we get nearer and nearer to 2030, this programme cannot stop. It needs to be ramped up if we are to reach the epic goal and leave no one behind.

I am extremely optimistic about what we can achieve. I know that the Government are committed to achieving more, and I know that my hon. Friend is absolutely dedicated to that. I always like to leave things with a request to the Minister—I know they are all thrilled when I do that—so I urge my hon. Friend to look at what can be done to provide more resources and finances to ensure we hit that vital 2030 target.