A Western Isles mother has claimed health officials are neglecting her son Ghillie’s needs after he missed important hospital appointments in London.
Fiona Renshaw said NHS Western Isles are refusing to fund transport for vital medical treatment at Great Ormond Street Hospital.
Seven-year-old Ghillie Renshaw is the fifth child born in the UK in 22 years with a rare condition called primary penile pubic epispaidias, abnormal genital organs.
Since birth, he has been attending annual appointments at London’s Great Ormond Streets Hospital for scans and reconstructive surgery following a referral by NHS Highland.
However, since moving from Skye to the Western Isles in 2019, he has missed several appoints including his second operation, scheduled in December, after island health bosses refused to fund his patient transfer “across the border.”
Miss Renshaw explained: “It is incredibly frustrating. He has missed out on his surgery now which he has waited six years for.
“This operation is very important. He is supposed to have this at a young age to improve his chance of having a normal both visual and functional penis.”
She explained the condition also affected his ability to pass urine, which could affect vital organs.
She added: “It has been almost two years without having his kidney scan and bladder function tests, no bio feedback at all. Do they think this is acceptable care?”
“He has to have his kidneys scanned regularly to make sure the urine is not getting trapped and backed up into the kidneys as it can cause damage,” the 36-year-old added.
“Last winter we had an appointment for him to go to London to get his scan and all his other checks and the Western Isles health board refused for him to go.
“I contacted the local MP Alasdair Allan and he managed to get them to agree but by the time they could be bothered to reply back to me to say they would agree to fund it on this one occasion, it was two weeks past his appointment.”
Western Isles health bosses have stressed the mother-of-two will be left to foot the bill as they are “satisfied” alternative care is available for her son in Scotland; a move Miss Renshaw says goes against advice from medics at Great Ormond Street.
The stand-off over Ghillie’s health has led to the missed appointments.
An NHS Western Isles spokeswoman said: “We can confirm that there are well-established processes for the transfer of care from different parts of the UK and that is explained to patients and their families in each case.
“Such transfer of care would take place in circumstances where NHSWI was satisfied and assured that the required level of care and or treatment is available in NHS Scotland, as is the case in this instance. This process was fully explained to the individuals concerned.”
Miss Renshaw says the delays were having a negative impact on her son.
“He is seven years old now and he is getting to the stage where he is getting embarrassed,” she said.
“He is getting teased and bullied in school about his condition.”
She said health bosses should be “ashamed of themselves” and urged them to reconsider.
She said: “I was advised by doctors a Great Ormond Street, to keep him there for all his treatment because of the risk of medical files and information going missing.
“It feels like my son has just been forgotten about and not cared if he has medical appointments already scheduled to attend and no way of getting him there.
“They should be ashamed of themselves. They are effectively causing unnecessary neglect to a child who has specialist health needs and they have dismissed them.”