FAMILIES have spoken for the first time about their children’s stroke agony in a bid to promote a new set of guidelines aimed at helping parents and health professionals spot the signs and improve long-term care for victims.

The Royal College of Paediatrics and Child Health (RCPCH) and the Stroke Association urged healthcare experts, parents and young people to familiarise themselves with the signs of childhood stroke to help prevent potentially devastating effects, as a new clinical guideline is launched.

Around 400 children in the UK have a stroke every year, leaving many with severe physical and mental impairments.

Experts say that with better knowledge of the signs of childhood stroke amongst doctors and parents, and with clear guidelines for rehabilitation, children should receive diagnosis and appropriate treatment quicker, minimising the risk of severe long-term health problems.

Mother Liz Thomas, a parent representative working with the multi-professional guideline development group involved in putting together the parent guideline, shared how her daughter suffered a stroke when she was 10.

“There was nothing wrong with my daughter before she had her stroke. She’d always been a really healthy child — she was fit, she ran, danced — she was a great ballet dancer. It’s fair to say that she has really suffered because of the stroke,” she explained.

“She’s been left with quite severe physical disabilities and has permanently lost the use of her left hand and arm. She has some problems with memory and processing. She also suffers from fatigue and sometimes gets depressed. All the normal things she might have hoped to enjoy as a teenager are now so much harder.

“This guidance will be incredibly useful and we need to make as many parents as possible aware of it.”

The extensive guidelines are the first to be truly multidisciplinary — and will be a useful tool for a range of professionals including therapists, psychologists and ambulance staff, as well as those working in education.

Dr Vijeya Ganesan, a paediatric neurologist and spokesperson for the RCPCH, said: “Although much less common than in adults, stroke is a devastating childhood illness, leaving permanent effects on most affected children.

“Early recognition is important to direct children towards rapid diagnosis and treatment. Many children with symptoms or signs that suggest stroke may have other serious neurological disorders and could also benefit from the changes in approach recommended by the guidelines. The guidelines also provide comprehensive information on how to best manage the long term needs of children, particularly rehabilitation.”

The first edition of the childhood stroke clinical guideline was published over 12 years ago, and this revised edition includes specific guidelines for clinicians on how to diagnose and manage stroke in children and young people, as well as guidance for parents, carers, and families on spotting signs and how to care for a child who has suffered from a stroke.

For the first time, the guidelines set out criteria for “clot busting” treatments for childhood stroke, which are currently routinely considered for adults.

Juliet Bouverie, chief executive of the Stroke Association, said: “Childhood stroke is often extremely frightening and stressful for children and their families.

“Far too few people realise that a child can have a stroke, which means diagnosis and treatment can take longer than for older patients.

“Whatever age you are, when stroke strikes, quick diagnosis is vital.

“We are pleased this latest guideline clearly states a scan should be carried out within one hour of arrival at hospital for every child with a suspected stroke.

“It is particularly helpful that a parent and carers’ version accompanies this guideline to ensure that families are fully informed and know what to expect.

“Stroke can be devastating, and we need to make sure that every child who has a stroke receives timely and appropriate care to allow for the best recovery possible.”