A Spilsby mum who has been refused therapy for her son who has a rare genetic condition is hoping a candlelight vigil to be held tomorrow (Saturday) will raise awareness for what she believes is the ‘death of care’.
Seven-year-old Sebastien Pettitt cannot speak, self-harms, has problems walking and is doubly incontinent.
Mum Dominique was living in France with her builder husband Steven when Sebastien was born and diagnosed with the chromosome disorder Phelan McDermid Syndrome. Although they were initially able to get therapy in France, the couple made the hard decision to return home to the UK when Mrs Pettitt was unable to find a suitable special school.
She said: “We found a property to rent next to Eresby Special school and plonked ourselves there until we could find a suitable house to adapt for Sebastien’s needs. I can’t fault the hospital care he has received or the help he gets at school. But that’s where it stops. How can we be restricted to four nappies a day and refused help from the mental health service when he selfharms and bites his skin?”
Her decision to hold a vigil is to not only raise awareness of Sebastien’s condition but her concern about services for the disabled in general.
Dominique said: “Sebastien can’t sign and we fought for non-verbal speech therapy only to be told they wanted to discharge him completely last year. If he is on the floor he cannot get up but we are told he’s not entitled to physiotherapy. The education, health and care plan by the government is totally inadequate.
”I hope anyone who has concerns will come along and support the vigil so we can make our voices heard.”
Tina Bellamy, strategic lead for specialist children’s services at Lincolnshire Community Health Services NHS Trust (LCHS), said she was unable to comment on individual cases. “However, I can confirm that there have been no cuts to the service,” she said. “The Children’s Therapy Service (LCHS) provides a service which is determined by the needs of the individual child throughout Lincolnshire who meet the referral criteria.
“Children receive a highly specialised assessment and care plans are formulated in partnership with parents and the child’s educational establishment if appropriate.
“We work with the parents, school staff and other agencies to ensure that they are equipped with the skills to meet the child’s therapy targets. Episodes of care end at a planned point when the child’s needs can be met by parents and school staff utilising the skills previously promoted by the therapist and it is established that no further specialist support is required. If parents have further concerns they have direct access back to the Children’s Physiotherapy and Speech and Language Therapy services to request a reassessment.”
She said the concerns will be investigated and parents can also contact them directly.
l The vigil takes place at the Franklin Memorial from 7pm to midnight.