Contact CEO gives evidence about health experiences of families with young disabled children

4 mins read

Wednesday 2 July 2025

Tags: disability, health, diagnosis, paediatrician, parliament, assessment, therapies


Contact’s Chief Executive, Anna Bird, has today given evidence to the Health and Social Care Committee about families’ experiences of health services in the early years.

The Committee is carrying out a review of the first 1000 days of a child’s life. Today’s session examined the provision of community paediatric services, asking witnesses for their views on the challenges families face in accessing services.

Anna talked about what Contact hears on our helpline and through our By Your Side hospital teams as well as from families who attend our Brighter Beginnings workshops. This includes:

  • There is often no support during often long waits for early years diagnosis.
  • Delays in assessment and diagnosis mean parents can’t get support from social care and other important services. They also lead to escalating needs with children waiting longer for specialist equipment (e.g. postural seats), wheelchairs and therapies including help with feeding and communication. 
  • Parents end up getting into debt to pay for private assessments and therapies. 
  • Schools often talk about children with SEND not being ‘school ready’ – for example not being toilet trained or able to follow instructions. However, delays in families accessing community paediatrics also means nurseries and schools are also ‘not ready’ to receive and support the child because they do not have a clear description of their needs or funding to support them 
  • More and more diagnosis is happening via online platforms, like Zoom, leading to increased feelings of isolation.
  • Parents find it very difficult to access a paediatrician in the early years, meaning they may have multiple professionals involved but no one overseeing their child’s care.

Anna Bird said: “The families we support often have complex health needs and what they need is early access to good quality expertise and insight into their child’s condition as well as wraparound care for the whole family. But what they face are long delays for assessments, diagnosis and therapies. This leads to a child’s escalating needs and huge stress and negative impact on the family’s health and wellbeing.”

One mum told us her son waited over two years to be seen by a paediatrician and a further 3 years for him to get a diagnosis of Houge-Janssens Syndrome Type 4. They were completely unsupported during that time. Until that point, everyone assumed his delays were down to parenting rather than an underlying diagnosis. The paediatrician was reluctant to refer her son for genetic testing which meant he was not diagnosed until the age of 7. “He and we were really traumatised by the lack of support, which impacted school and our access to support.

What we would like to see:

  • Investment in the community paediatric workforce including paediatricians and therapists to reduce waiting times.
  • Increase the number of paediatricians and therapists trained in neuro disability and children’s developmental needs.
  • Engage charities and other parent carer-led organisations to design and provide holistic advice and support to parents on waiting lists 

Contact’s Brighter Beginnings programme delivers free online and in-person workshops to parents of disabled children on toileting, sleep, communication and behaviour in the early years. Our Helping Hand service provided a 6-week programme of support for families in West London on autism waiting lists covering behaviour, communication, carer wellbeing, anxiety and supporting their child’s sensory needs. These services need to be made more widely available for families, perhaps via referrals from the neighbourhood children’s teams, for example. 

  • Reinvigorate Portage services.  Families consistently highly rate portage, but services are rare.
  • Ensure appointments with paediatricians are accessible for families – in person as well as online.
  • Develop models of healthcare and support tailored to pre-school children with SEND based in the community.  Specialist centres like the Tree House Early Years Centre in Newcastle are a great example of how best to join up health, education and support services for disabled children. The Centre was co-designed with families and the local parent carer forum.