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This is a lifeline for my kids...it is their only real social time
9:00am Thursday 26th December 2013 in News
CHILDREN, almost by definition, will fall out with the parents when they approach their early teens.
But when her children became distant, uncommunicative and even violent, Sue Beckwith realised it was more than a passing phase.
Eventually, Anna and Stephen were diagnosed with Juvenile Huntington’s Disease, a genetic disorder which affects muscle coordination and leads to cognitive decline and psychiatric problems.
Over the space of three years, Sue had noticed daughter Anna undergoing dramatic behavioural changes.
She said: “She was running away from home and being quite difficult.
“She was feeling completely out of sorts, wasn’t sleeping or eating properly, but couldn’t explain why.”
Initially, neurologists put it down to stress after conducting walking and hand-eye co-ordination tests at the National Hospital for Neurology and Neurosurgery, in Queen Square, London.
But when mum Sue was not convinced by the diagnosis, blood tests were taken and in 2007 Anna was diagnosed with Juvenile Huntington’s Disease.
Soon after her brother Stephen was also diagnosed with the condition.
But now the family of Harwich Road, has a lifeline.
Both the siblings are regulars at St Helena Hospice’s weekly transition service meeting, at its Highwoods base, in Colchester.
It offers people aged between 16 and 40 a venue to meet and spend time with nurses as well as friends and family.
Every Monday, up to ten patients take part in the service, which has no set rules on what they do.
Stephen struggles to communicate unless he is speaking about his passion for trains, while Anna communicates mainly using a “Go Talk” machine, provided by the service.
Each week Stephen, now 21, brings one of his many trains from his vast collection, sets it up and explains the details of each model to nurses.
Anna, 19, is content to be pampered, getting her nails done or sitting in a bubble bath.
Her machine is assigned phrases, which are set next to a picture depicting what she is asking for.
Mum Sue said: “This is a real lifeline for them. Without it, I don’t think they would get the chance to be in any way social.
“With the way they are, they can’t just nip out to the pub for a drink or go out to a club with friends, so that is their social time and they really love it.
“The service starts at 3.30pm and Anna is ready to go from 10.30am.
“I think it’s a two-way thing though, as the nurses really seem to enjoy spending the time with all the people who use the service.”
Karen Neller, lead nurse at the transition service, which began in March, said: “When young people reach 19, they are not eligible for the children’s service.
“There is a gap between children’s and adult services and the transition service is there essentially to fill that.
“It is the only service of its kind in the country and we’re proud of it.”
It is jointly run by the Highwoods h o s p i c e and the J’s Hospice, in Chelmsford.
Staff are paid by the North East Essex Clinical Commissioning Group.
Referrals to the service, which is held in the Joan Tomkins Day Centre in Highwoods, Colchester, can be made by a patient’s health and social worker as well as the patient or their family either on the phone or online, Formore details, go to st helena hospice.org.uk, thejshospice.org .uk or call 01206 890360.
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