Children with Serious Neurological Conditions

Debate between Daniel Francis and James Asser

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.