Calls for prescription changes to help families with autistic children

They have said that unnecessary suffering is caused because of difficulties obtaining melatonin, which can help regulate sleep and is often prescribed to help manage sleep disorders in children with autism.

In particular, they are concerned that requiring regular visits to see a GP could put off some parents and children.

One parent said their daughter, who was prescribed the drug, had to be reviewed by a paediatrician and nurse every nine months.

‘An additional and stressful trip to the doctor is necessary,’ she said.

‘She is non-verbal and, therefore, the doctor does not gain anything, but I have a bill to pay, along with a distressed child. I refuse to place my child in this stressful situation.’

Anthea Roue and Marc Winn of the group Autism and Me Guernsey have approached Health & Social Care to discuss the problem, of which they said the financial burden on parents was only one part.

‘Responses from HSC conclude that there is nothing more to be said due to chargeable healthcare,’ said Mr Winn.

‘Dialogue with HSC has ceased due to the lack of joined-up processes available between our healthcare providers.’

HSC said it had looked at whether prescribing could be done by the Medical Specialist Group.

‘This is simply not possible at the moment,’ said a spokesman.

‘Secondary care is under significant pressure and the process on-island is, with few exceptions, for specialists to initiate treatments and for GPs to follow on prescribing.

‘Parents can aim to reduce the costs of repeat prescriptions by requesting them during routine appointments.’

The MSG said it understood parents’ frustration when consultants were unable to issue repeat prescriptions for their child.

‘However, in line with the secondary healthcare contract between the States and the MSG, repeat prescribing is not routine practice for the MSG,’ said a spokesman.

‘We support GPs using maximum flexibility in their patient reviews, for example by offering remote consultations.’

HSC said that Guernsey used UK processes and supply chains.

‘All healthcare professionals are UK-registered.

‘In the UK, melatonin is a prescription-only medicine.

'It follows that it is a prescription-only medicine in Guernsey,’ it said.

Mr Winn said that melatonin was available without prescription in other countries and, since Guernsey already had its own regulations for medicinal cannabis and CBD, asked why it could not be more flexible with the prescription of melatonin.

He felt that HSC appeared not to have an appropriate way of dealing with patients who should remain on medication long term.

‘We would expect GPs to use maximum flexibility in terms of issuing repeat prescriptions, using remote consultations, house visits and so on in the management of repeat prescribing,’ he said.

Healthcare Group, which runs surgeries at Rohais, St Martin’s, Cobo and in the High Street, said it was a legal requirement to return to a GP for a repeat prescription every six months.

In addition, it was important for the GP to see the patient.

‘We strive for excellence in medical practice to ensure the utmost care and safety for our patients,’ said a spokesman.

‘Regular reviews of patients on repeat medication, at least every six months, are essential to ensure appropriate monitoring is in place.’

But he added that Healthcare Group always tried to be flexible with patients and families and come up with tailored plans suitable for them, especially in complex cases, such as children with autism.

‘We warmly encourage our patients with specific requirements and needs to maintain open communication with us about their healthcare so we can work together to achieve the best outcomes,’ he said.