A MARLBOROUGH mum feels she is a victim of a postcode lottery, after being refused a liquid form of a drug for her two disabled daughters on prescription - because it costs more than twice the tablets.
Sarah Addison knows people in Swindon, where her daughters go to school, who are still getting liquid melatonin on the NHS.
The drug helps calm her mentally disabled twin daughters Katie and Amy, 13, who have a cognitive age of five or six, so they fall asleep at night.
She has tried crushing tablets, mixing them with treats and persuading the girls to take pills, without success, and is now rationing her final prescription of the liquid drug, pending an appeal.
A Wiltshire Clinical Commissioning Group exceptions committee, which holds NHS purse strings, blocked her paediatrician’s attempt to get a further prescription for the drug.
The CCG’s Clinical Advisory Group said the cost of liquid melatonin
This can prove to be very expensive to the NHS’, adding: “In October 2017 NHS Wiltshire CCGs Clinical Advisory Group agreed that the CCG will not routinely commission use of unlicensed forms of melatonin for children with learning disabilities or chronic sleep disorder associated with specific long-term conditions.”
Melatonin costs around 47p per tablet, while unlicensed forms of melatonin such as lozenges and tablets in liquid form cost an average of £1.30. In 2016-2017, Wiltshire CCG spent £75,319 on 1,382 licensed melatonin tablets and £57,461 funding 424 prescriptions for melatonin in non-tablet form.
A letter to Mrs Addison, of Vespasian Road, stated: “Committee members acknowledged the difficulty the patient is having in tolerating the current medication, however, in the current financial climate and in the light of the poor evidence base for this treatment, committee members could not justify approving a substantially more expensive treatment so as to be more palatable for the patient, therefore they were, with regret, unable to approve funding.”
Mrs Addison, 47, said: “I want to high light the problems that people with a disability encounter when going through the system.
“I can’t cope without the melatonin and am at breaking point now.
“I have another daughter to consider, she needs her sleep too. it disrupts the whole household when they don’t sleep. “I have a small amount of melatonin left but What am I going to do when it runs out?”
She also has had extra pressure added to the family after Virgin Care, which runs children’s services in Wiltshire, moved her from her practice in Savernake to a new paediatrician at a practise in Tidworth, meaning a 28-mile round trip to see their doctor. She said: “I used to be a three-minute drive from Savernake. Now I have to go to Tidworth, Malmesbury or Calne. Virgin Care has been a disgrace.”
A spokesperson for Wiltshire Children’s Community Health Services at Virgin Care said: “We run clinics across Wiltshire and we are always happy to rearrange appointments if another venue is more convenient, and parents should discuss this with their care team directly. While the venue the previous provider used for appointments in Marlborough is no longer available for us to use, we’re working with commissioners to identify a new venue in the town.“
Virgin Care won the service contract for children’s services in Wiltshire in 2016.
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