Neurodevelopmental Conditions

1. Questions to the First Minister – in the Senedd on 19 June 2018.

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Photo of Lee Waters Lee Waters Labour

(Translated)

8. What action is the Welsh Government taking to make sleep medication for children and young people with neurodevelopmental conditions more easily available? OAQ52380

Photo of Carwyn Jones Carwyn Jones Labour 2:17, 19 June 2018

Currently there are no medicines containing melatonin licensed in the UK for the treatment of neurodevelopmental disorders in children and young people. We are guided by the recommendations of the National Institute for Health and Care Excellence and the All Wales Medicines Strategy Group.

Photo of Lee Waters Lee Waters Labour

Thank you, First Minister. Families with children with neurodevelopmental conditions often report that getting a child to sleep is one of the most stressful and difficult times of the day. One constituent came to see me recently. They couldn't settle their son until four in the morning, causing chaos in the house and stress for the whole family. When children do get to see a specialist, they're often prescribed melatonin as a way of settling them until they get into a routine, but that's not currently licensed for children, and GPs won't prescribe it. Given that, in the Hywel Dda health board, there's still a waiting list of some 18 months to see a specialist—though this is improving—this does cause great stress for families who are unable to get help from primary care and unable to get to see a specialist consultant. We must do better in offering them something, First Minister, to help them and their families deal with this very difficult condition. Would he look to see what is practicable within the constraints, and, even better, try and remove some of the constraints?

Photo of Carwyn Jones Carwyn Jones Labour 2:18, 19 June 2018

The difficulty is that it's not licensed for use at the moment. Now, medicines licensing is not devolved. Once a medicine is licensed, the use of it then is governed by NICE and the All Wales Medicines Strategy Group, but, of course, for GPs, GPs are governed—I know Dai Lloyd is over there—as I understand it, by rules that tell them what they cannot prescribe, not what they can prescribe. So, it is possible for a GP to prescribe melatonin; it's a matter for individual prescribers. There's no restriction on GPs doing that, but, of course, any GP is going to ask the question, 'Well, is this something I should be doing? Is it something that I regard as clinically safe?' That's inevitable, and they do take clinical responsibility for the medicines that they prescribe. The British Medical Association does say to GPs that they should not prescribe beyond their own knowledge or capability—sensible advice—and I can imagine GPs being nervous about prescribing what appears to be a medicine unlicensed for use in children.

The next step has to be to look at evidence to make sure that it is licensed for use in children, and then of course to move on from there. What I can say, however, is, in the meantime, we have established a new service to assess, diagnose and provide ongoing support for children and young people with neurodevelopmental conditions, and we are investing £2 million a year to do so.

Photo of Elin Jones Elin Jones Plaid Cymru 2:19, 19 June 2018

(Translated)

Thank you, First Minister.