Working to improve care for children with additional needs
Families of children and young people with special educational needs and disabilities (SEND) have shared their experiences at Queen’s Hospital, and views on what could be improved, in a meeting instigated by Margaret Mullane, MP for Dagenham and Rainham.
It gave parents the chance to speak directly to our Chief Executive (Interim), Fiona Wheeler, and colleagues from our Children’s team.
Many of the children, who have a range of conditions including epilepsy, learning disabilities and complex medical needs, attend Ravensbourne School in Romford, however, parents said the challenges they face accessing healthcare are shared by many families of children with additional needs.
They described the difficulties they experience when bringing them to hospital, including with communication, often having to explain their child's needs repeatedly because information isn’t always shared between teams. Several also said hospital passports were not used consistently.
Parents also said hospital beds were not always suitable for children with additional needs. Some said they cannot leave their child's bedside because they are worried they could hurt themselves.
The meeting comes as more children with autism or a learning disability are attending our emergency departments. The number of children identified with these needs increased from 34 in April 2025 to 68 per month in June 2026.
We’ve introduced an action plan to address the concerns raised by parents and carers.
We’ve been exploring several options to offer these children a safe bed where the current hospital beds don’t meet their needs. This includes beds which descend to floor level to keep them safe, along with enclosed beds which give them freedom to move around without falling.
We also have changing facilities in both King George and Queen’s sites in both atriums, and these can be used by older children. We will promote these by raising awareness of these among staff and parents and carers.
We’re also working on identifying children who need additional support as soon as they arrive into our A&Es, so staff have the information they need from the start. This includes building on the alert system currently in place for children who regularly attend our hospital, so staff are aware of their needs as soon as they are admitted.
We will also improve our communication with families. We will set up a forum where we will meet regularly, and in addition attend coffee mornings at the school to engage with them and hear their feedback.
We will also share our plans with them for transforming our A&E and improving the poorly laid out department.
Claire Drummond-Hurst, from Rainham, shared her experience of bringing her son to Queen's. He has tuberous sclerosis, a rare condition that affects his heart, brain, liver and kidneys, as well as a learning disability. He has daily seizures and will need hospital care throughout his life.
A vagus nerve stimulator (VNS) helps control his seizures, but Claire said they still need to come to hospital when the seizures become more severe.
She said:
They have saved his life several times.
Speaking after the meeting, she added:
I was very impressed. They did listen and they seemed to understand what we were trying to say, but actions speak louder than words. I know it's not going to be a quick fix, but if there are some things they can start doing now, that would make a difference.
Lisa Game attended the meeting to speak about her son, George, who is blind, non-verbal, has epilepsy and uses a wheelchair.
George was treated at Queen's Hospital before being transferred to Great Ormond Street Hospital after developing RSV. He now also needs a pureed diet and ongoing support.
Lisa said:
It's communication. We keep having to say the same things every time. We only want to say it once.
We put our points across to them and hopefully there is an action plan.
Fiona Wheeler, our Chief Executive (Interim), said:
Families have told us what isn't working well. We've heard that communication needs to improve and we need to do more to support our children who have additional needs, and their parents and guardians.
There's a huge amount of work to do together and this is just the beginning. We’ll be spending a lot more time together to get this right.
Margaret Mullane, MP for Dagenham and Rainham, said:
I am incredibly proud of the parents who have come to Queen's Hospital to speak up not only for themselves, but for all parents.
When you arrive at A&E with your child, it is an incredibly stressful experience. You want the best possible outcome for your child, and parents should not have to be the ones driving the process or coordinating the care they receive.
They need to feel supported, reassured and confident that the right response is in place.
I believe Queen's Hospital has listened to the concerns raised by parents. There is a positive plan in place to deliver the improvements that families need.