Increasing numbers of parents are seeking overseas medical support for their disabled children, according to recent research by Caudwell Children, the national charity providing emotional and practical support for disabled children.
From more than 2,000 families questioned, in a recent survey, 1 in 4 said they had searched for treatments abroad. And with parents seeking support for a range of conditions, from Autism to Cancer, the research also indicates that for many, the treatments are simply unavailable in the UK.
While surprised by the results of the survey, Trudi Beswick, CEO of Caudwell Children, believes that the decision to seek treatment abroad is no criticism of the NHS. She said: “In recent months the NHS has been in the media spotlight for the wrong reasons. It has endured fierce criticism from a number of public figures, and questions have been asked about the quality of service it provides. But the respondents in our survey claim that they have been forced to look overseas, as the treatments are simply not delivered in the UK.”
One example of this is Proton Beam Therapy, a radiotherapy that uses a high energy beam of protons, rather than high energy X-rays, to deliver a dose of radiotherapy for patients with cancer. It is commonly used to treat hard-to-reach cancers, such as spinal tumours. The treatment has a reduced risk of damaging surrounding tissue and minimises any side effects.
Another treatment, that until recently was only available in the US, is Selective Dorsal Rhizotomy (SDR). The treatment has been developed to improve the mobility and health of children with Spastic Diplegia Cerebral Palsy. The condition reduces the movement of their legs making it difficult for them to walk.
The procedure involves cutting a number of the sensory nerves in the lower spine and combined with post-operative, intensive, physiotherapy the spasticity in the legs is abolished. Mobility doesn’t return overnight but after months, or even years of physiotherapy, children can benefit from near full, independent, mobility.
One child, who successfully benefited from SDR treatment in the US, is 12-year-old Thomas David Hughes, from Stoke Golding, in Warwickshire. Dad, David, explained why he and his wife, Kate, took their son overseas for treatment when he was 10 years of age: “Thomas was finding it difficult to walk and if he tried to stand still he would simply fall over. We were taking him to see the NHS consultant every six months but they said that there was very little that they could do for him. They gave him Botox injections in his legs, to relax his muscles, and they set his legs in plaster, to try and improve his posture, but it did little to help him.”
David explained that it was when he realised that the NHS didn’t have the resources to give his son regular physiotherapy that he knew he had to take the matter into his own hands:
“The Botox worked well at first but it got progressively less effective. We knew that we had to do something drastic if we wanted to improve Thomas’ quality of life. The consultant had offered Thomas the option of Orthopaedic surgery but we believed this to be more of a preventative measure, rather than a cure.”
Having found out about SDR on the internet it took the family just two weeks to decide that they wanted Thomas to have the treatment.
They were aware of Caudwell Children, having received a specially adapted tricycle from them in the past. They approached the charity for help, once again, and they were delighted when their application was successful.
Kate said that the treatment has had a profound effect on Thomas’s life. As she explained: “The expression ‘Life Changing’ is often overused but it couldn’t better describe the effect that the operation has had on Thomas. He’s been transformed. He’s gone from a boy who ‘can’t do’ to someone who ‘can’, it’s utterly amazing. He goes to hockey once a week and he’s had trials for the school football, rugby, and basketball teams!”
With over 770,000 disabled children currently living in the UK, Caudwell Children conducted the research to raise awareness of the ‘Treatment Services’ that they provide.
Based on figures from Cancer Research UK and the NHS, there are potentially 54,500 children in the UK, suffering from cancer, or Cerebral Palsy, alone. Caudwell Children’s research suggests that as many as 13,625 families could be considering overseas treatment for these conditions in 2014.
And with the charity successfully accessing overseas treatment for 12% of those families who approach them, further awareness of their work, in just these areas, could see a staggering 1,635 children benefiting from Caudwell Children’s ‘Treatment Service’.
For David, the importance of Caudwell Children’s role in improving the independence, mobility, health and wellbeing of his son cannot be underestimated: “Without them we were going nowhere. We certainly didn’t have the financial means to access the treatment overseas. Whilst the NHS is a fantastic service it couldn’t help Thomas, which clearly shows how vital charities like Caudwell Children are.”