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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?
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.
The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)
I congratulate my hon. Friend the Member for West Ham and Beckton (James Asser) on securing this important debate and acknowledge the journey of his constituent Shelina Begum and the work she has done on behalf of her daughter, Tafida Raqeeb, with the establishment of the Tafida Raqeeb Foundation and all the work it does.
I thank my hon. Friend the Member for Bexleyheath and Crayford (Daniel Francis) for his contribution. His tireless work raising issues around supporting and caring for children with neurological issues is well known in this House. My hon. Friend the Member for Leeds South West and Morley (Mark Sewards) raised the issue of access to EHCPs—which are provided through local authorities—which continues to need work, and my hon. Friend the Member for Newcastle-under-Lyme (Adam Jogee) highlighted the need for joined-up care and services.
I am grateful for the opportunity to speak on a subject that touches on the lives of thousands of families across the country. There are hundreds of serious neuro- logical conditions that affect children, ranging from epilepsy and cerebral palsy to rare, genetic and degenerative disorders and acquired brain injury. I will speak on the common themes that unite people’s experiences: the need for timely diagnosis, integrated care and comprehensive support for every child and family, regardless of the specific condition they face.
Living with a serious neurological condition is a life-altering reality for children and their families. Whether congenital, acquired or progressive, these conditions often bring profound physical limitations, developmental delays and complex care needs. Families face relentless hospital visits, financial strain and the emotional toll of uncertainty, all while navigating fragmented health, education and social care systems.
The Government recognise these challenges and are committed to improving access to care, reducing inequalities and providing holistic support through health, education and social care systems. Our 10-year health plan will transform care for children with serious neurological conditions by delivering integrated, community-based services that put families at the centre and by prioritising early identification and intervention, ensuring that children receive timely diagnoses and treatment to prevent complications. Through neighbourhood health centres, multidisciplinary teams—including paediatric neurologists, therapists, mental health professionals and social workers—will provide wraparound support that meets medical, emotional and practical needs. Digital tools will empower parents to manage appointments and access records as easily as they bank online. This is about creating a system that works for families, not against them.
Through NHS England’s neurology transformation programme, we are creating pathways that wrap around families. The national bundle of care for children and young people with epilepsy sets clear standards for paediatric epilepsy care. For cerebral palsy, new commissioning frameworks ensure early intervention and co-ordinated services. Specialised paediatric neurosciences services provide access to life-changing procedures, such as epilepsy surgery and selective dorsal rhizotomy—that is a difficult word to say, Madam Deputy Speaker.
The Government are committed to improving lives for those affected by rare diseases, which includes some serious neurological conditions, under the UK rare diseases framework. This includes better co-ordination of care and improving access to specialist care, treatment and drugs. We also hear that children and families impacted by these conditions can struggle to access mental health support, which is just not right. To address that, the NHS genomics education programme has published new resources on rare diseases for healthcare professionals to help them with sensitive conversations. The 10-year health plan also sets out ambitious goals to transform mental health services across the country so that everyone living with a rare disease, along with their loved ones, can get the support they truly deserve.
We know that timely access to care is critical, yet many families face delays of months. That is unacceptable. That is why we have committed to meeting the NHS constitutional standard of patients seen within 18 weeks by March 2029. For the elective reform plan and the neurology transformation programme, we are expanding diagnostic capacity, rolling out virtual consultations and opening more community diagnostic centres seven days a week. Those steps will cut waiting lists and ensure that children and families get the care they need when they need it.
We know that neurological conditions often come with emotional and behavioural challenges. That is why mental health support is being embedded into paediatric neurology pathways. Initiatives such as the national bundle of care for children and young people with epilepsy include psychological support as a core component. We are also expanding mental health support teams in schools and launching young futures hubs to provide integrated local support. This holistic approach recognises that physical and mental health are inseparable.
For many families, the move from paediatric to adult services is a key time of uncertainty. We are addressing that through structured transition planning, as set out in the National Institute for Health and Care Excellence guidance and NHS England frameworks.
Daniel Francis
Transition is a key issue for families in this area. In the last Parliament, the all-party parliamentary group on cerebral palsy issued recommendations about health pathways for adults, because for a lot of these conditions, including cerebral palsy, there are not the same health frameworks for adults as there are for children. Will the Minister take that point away and look at how we can replicate some of the pathways that are there for children in the adult sector?
Ashley Dalton
I am more than happy to do that. All too often, we have seen that the transition is a really difficult time, and as he points out, where services are perhaps not as joined up and cohesive for adults as they are for children, that is hugely jarring—a huge problem for families to navigate. We are committed to making sure that transition plans start early, involve families and ensure that continuity of care. Our goal is to make the process smooth and supportive, not stressful and fragmented.
Health is only one part of the picture. Children with serious neurological conditions often have special educational needs and disabilities, and their success depends on a joined-up approach across sectors. That is why the SEND reforms that the Government are working on are so important. We are moving towards earlier intervention, stronger inclusion in mainstream education, and better collaboration between health, education and social care. These changes will ensure that support is needs-led rather than diagnosis-driven, with clear accountability across integrated care boards and schools. By embedding mental health provision, improving workforce expertise and planning smooth transitions into adulthood care, we aim to deliver consistent, high-quality support that helps children to thrive and restores confidence in the system.
Caring for a child with a serious neurological condition can place enormous financial strain on families. The welfare system is designed to provide a crucial lifeline, ensuring that no family is crushed by the additional, often substantial, costs associated with their child’s condition. The Government provide support through a range of benefits, including disability living allowance, carer’s allowance, personal health budgets and local authority support, including respite care and equipment provision. Financial support is not just about money; it is about giving families the stability and security they need to focus on what matters most—their child’s wellbeing.
Our commitment to children with serious neurological conditions reflects the core values of our society: compassion, fairness and the belief that every child deserves the chance to reach their full potential. By improving healthcare access and providing comprehensive support systems, we are building a more inclusive and resilient future for all. We will ensure that no child or family feels abandoned, and that compassion and co-ordination define the care that they receive.
Madam Deputy Speaker (Ms Nusrat Ghani)
We have just checked the pronunciation of dorsal rhizotomy—hopefully I have not got it wrong either!
Question put and agreed to.