Children with Serious Neurological Conditions

Adam Jogee Excerpts

Thursday 20th November 2025 Commons Chamber

[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.