THE family of a girl with a life-limiting condition say they are unhappy with the care she’s had from the hospital looking after her.
Robyn Perriman has Rett syndrome, which affects brain development, and had to have metal rods inserted in her back to fix a curvature of her spine.
But since the operation earlier this year, the rods have started breaking through the skin on the 16-year-old’s back.
Robyn’s mum Nicola, from Waterlooville, wants them to be removed, but Southampton General Hospital – which has been caring for Robyn – has offered antibiotics instead after a meeting with the family on Robyn’s care. Staff also offered palliative care.
But now mum-of-five Nicola is seeking a second independent opinion on getting the rods removed.
She claims that the hospital has decided not to remove the rods, but the hospital says it is happy to review Robyn’s care.
She said: ‘We have an appointment with another hospital next week to get a second opinion on removing these rods.’
Due to the Rett syndrome, Robyn has acute kidney problems and Nicola said she knows an operation to remove the metal carries risks.
She added: ‘Robyn could die from the surgery or complications from it or she could have the rods removed successfully and live a happy life.’
A spokesman for University Hospital Southampton NHS Foundation Trust said it was only interested in providing the best possible treatment for Robyn.
He said: ‘Robyn’s clinicians met her parents last week to discuss her condition and ongoing care and agreed a plan with them which we continue to work on with their support. She has a rare genetic condition which causes severe disability and we’re only interested in providing the best possible treatment for her and support for her family.
‘It’s deeply distressing for clinicians who have cared for her to be portrayed wrongly as being dismissive of them.
‘While Robyn’s parents have highlighted concerns and questions about her clinical management, we have not been contacted by them since our meeting last week and were unaware of the issues they have raised since.
‘We know the difficulties and stress that Robyn’s parents will have dealt with over many years and, if they feel they would like to review her care, we would welcome the chance to talk to them and go through the options available – but we can only do that if we are given the opportunity.’
Businesses rally to offer Robyn a prom
THE family of Robyn Perriman have been overwhelmed with the support they have received from people in Portsmouth.
Nicola, Robyn’s mum, wanted to organise a prom for January for the 16-year-old who has a rare condition called Rett syndrome.
JC Brides has offered to give Robyn a free dress while Portsmouth Irish Club has given them use of their venue for free. Drift Bar is donating free food.
Nicola, from Waterlooville, said: ‘The response has been fantastic. We want to give Robyn a prom and to have these people helping is just lovely.’