Battling over St Albans teen's hydrotherapy treatment
PUBLISHED: 15:24 01 May 2014 | UPDATED: 15:24 01 May 2014
The mum of a St Albans teenager who faces a daily battle with an extremely painful muscle-wasting condition has been forced to fight with the county council for vital treatment.
Dominic Frangiskou-Hemming was born with Duchenne muscular dystrophy, a fatal genetic disorder where those afflicted – usually boys – start losing the ability to walk while very young and end up in a wheelchair by the age of 10-12.
Most sufferers die in their early 20s.
Dominic’s mum, Kaye Hemming, is exhausted after spending months battling with Herts county council (HCC) for regular hydrotherapy treatment for her son.
Problems with the council began last July when at the age of 19 Dominic left Watling View School in St Albans, which caters for pupils with a range of disabilities.
The teen was receiving four hydrotherapy sessions in the school’s pool, which were vital as they kept him relatively pain-free.
Kaye explained: “When his muscles seize up it’s very painful for him. Physio is harder for him to tolerate.”
However when Dominic turned 19, he had to leave the specialised school and access adult health care services, with problems stemming from Kaye having to deal with a range of council departments.
She has had difficultly finding another institution within the county where he could continue receiving both education and regular hydrotherapy sessions, which she said “prolongs his health and his life”.
The council’s education department initially offered two hydro sessions, one at Keech Hospice half an hour’s drive away, and the other at Breakspeare School, in Abbots Langley.
But Kaye explained: “Two sessions aren’t enough for him and because Dominic is autistic, he couldn’t handle going to different places.”
An independent adjudicator has said the education department needs to accommodate his hydrotherapy treatment. As a result of the council’s inability to provide care at an institution which caters for both his educational and hydrotherapy needs, Dominic has not had any sessions in a pool since December.
Kaye said: “I have been pushed from pillar to post with this. HCC don’t seem to care. Given it’s a life-limiting condition, surely he deserves the best they can give him. Dominic should have a happy, decent quality of life. Parents with special needs children shouldn’t have to go through this, especially those who have terminal illnesses.”
Her son is currently attending a day centre three days a week in Potters Bar.
With Dominic’s respiratory system “going downhill” as a result of a lack of regular physio and hydrotherapy, a desperate Kaye has approached St Albans MP Anne Main for help.
Mrs Main said: “This situation would push most families to the edge. The lack of supportive and decisive decision-making is unacceptable.
“The family should not have to fight with this chaotic system so that Dominic has access to appropriate education and care. I will continue to support Dominic in any way I can.”
A spokesman for HCC said: “Dominic attends a day service three days a week and, together with the NHS, we are providing support and respite care at home. We are currently working with the family to agree an appropriate level of care and support for the future.”