GPs urged to be first port of call for disabled children

Contact a Family developed the materials after research conducted by the organisation revealed more than three quarters of parents with disabled children do not see their GP about their child’s condition.

Parents and carers said they had difficulties with accessing GPs, and admitted to visiting local A&E departments more frequently as a result. One family told the charity that their GP had not had any involvement in their child's care since diagnosis 13 years previously.

Another parent warned: “Our GP does not want to see our son because of his challenging behaviour, he diagnoses him without seeing him.”

And one said: “My son has Duchenne Muscular Dystrophy and asthma and on several occasions I have been unable to get him a GP appointment. He has been admitted to hospital twice because of this.”

The guides warn that the consequences of inappropriate A&E use are serious, since doctors in A&E are not able to view the child’s medical record, and children can wait for hours to be treated for simple illnesses that could be treated by their GP.

When a child moves to adult services, their GP often becomes the lead professional responsible for coordinating care, so if they haven't seen the child for years, they are not familiar with their medical condition and history.

To tackle this, the guides contain advice for GPs and practice managers about practical steps to make access for disabled children easier, such as offering appointment times at the start of clinics when waiting times are shorter.

Making GP Practices More Welcoming for Families with Disabled Children and GP Practice Guide: Supporting Disabled Children and Young People also suggest children with sensory overload should be offered the option of waiting in a quiet room or in their car rather than busy, public waiting rooms.

“Many children or young people with neurological conditions or learning disabilities can find it difficult to be in a room with lots of people and become distressed if they have to wait a long time,” said Sheila Davies, who developed the guides.

“If this happens in the GP's waiting room, it can make it more difficult for the clinician to examine them, take their medical history and check the child and family are receiving the support they need.”
 
The guides were backed by a parent of a disabled child, Ella Baines, who is also a GP. She said it was important GPs built relationships with disabled children and their families to ensure continued and good care.

“I work with many families with disabled children. For me, getting to know a disabled child when they are well is key to assessing them properly and understanding the whole family means we work together to make decisions,” she said.

“It's important that we ensure families with disabled children see the GP as the first port of call rather than the last resort when their child is unwell. Simple adjustments to appointments and seating areas, for example, can drastically improve a family's experience of seeing the GP.”

Research conducted by Contact a Family in 2011 found 66 per cent of carers wanted GPs to have a better understanding of their child’s condition.