Family’s struggle to get disability car seat

Jennifer Wright’s three-year-old daughter Florence was born with a neurodevelopmental disease and suffers from severe epilepsy.

Her condition means that she finds it difficult to support herself, due to poor muscle tone, and she has a movement disorder which causes involuntary twisting and writhing.

“Simple things for other children are massive things for her because of her delayed development,” Jennifer explained.

Florence’s inability to support herself means that unlike other little girls her age, she cannot sit up by herself or hold her head up.

“The Trust provided us with a specialist high chair, bathing equipment and a buggy. Without this equipment all she can do lie on the ground. She needs to have this specialist equipment for her own safety and to prevent accidents.”

If Florence’s head and neck are unsupported, there is danger that her head will fall forward onto her chest, blocking her airway – which could prove fatal.
The three-year-old did not have a specialist car seat and on one terrifying car journey to Belfast her head slumped forward. Florence was vomiting and aspirated and became unresponsive.

“It was terrifying. By the time I got her out of the car I didn’t know how much fluid she had breathed in, and it wasn’t safe to put her back in the car to take her to a hospital. We were on a country road and we had to get to the nearest road sign for the ambulance to come and get us
“At that point we knew we needed a specialist seat to keep Florence safe.”

Jennifer contacted the Western Health and Social Care Trust for help, however she was told that they did not provide disability car seats.

“It was such a worrying time. The car seat we were using wasn’t right and wasn’t working but weren’t being offered any help or solutions.”

Jennifer said she felt very isolated and didn’t know where to turn.

“Car journeys became filled with terror for us and we were constantly freaking out and cancelling hospital appointments. At times we couldn’t go anywhere because it was too dangerous and too stressful. 

“We got to a point where we thought, what is the point of putting yourself in a dangerous situation to join in with the rest of the world, it was just not worth it.”

The family eventually applied to the charity Newlife who told them it was a common issue across the UK with local Trusts or authorities not providing such seats.

“For families already struggling with the cost of having a child with extra needs we feel that we should get help for a specialist car seat,” Jennifer said. 

“These seats can cost thousands of pounds depending on the child’s needs.”

Within a few months, Newlife provided Florence with the specialist car seat to support her body.

The car seat is padded in the right places to ensure that Florence doesn’t slump or fall in her seat.

“The seat has made it so much easier for us to go out as a family. Knowing that Florence is safe in the car and isn’t at risk of choking is such a relief for us all, it’s taken so much stress off,” Jennifer said.

A spokesperson for the Western Trust said they were unable to comment on individual cases. However they added:“If a patient/client or their relative has any issue in relation to their treatment or the service they have received, we would encourage them to raise these issues through the Trust’s comments and complaints system - the Patients’ Advocate Office on (028) 7161 1226.”