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8 December 2017

Mum tells of impact on son when there is a shortage of epilepsy medication

Kay Smith, mum to 14-year-old Josh who has  epilepsy, has told BBC Radio 4 listeners of just how frightening and critical it can be if her son is unable to get the medication he needs to treat his seizures.

Screenshot of Eddie Mair talking on BBC Radio 4's PM

Listen to Kay Smith talking about the implications of drug shortages for her son Josh. Scroll to 33.07. Content is available for 29 days.

Kay from Middlesborough told yesterday's PM programme how, without the right versions of his anti-epileptic drugs, Josh can go into status epilepticus or end up in hospital.

Josh takes a combination of four epilepsy drugs on a daily basis, but it is the medication clobazam that he is particularly sensitive to and needs a constant supply under the brand name Frisium.

Radio 4's PM programme was running a news item on drug shortages following an article in The Times which said that more than 100 drugs, including some for epilepsy, were in short supply. This meant that patients were going without essential medications.

Changing brands

Kay Smith told presenter Eddie Mair that there had been problems in recent months with availability of Josh's medication which meant he was offered an alternative version. 'But changing brands could mean that Josh's seizures get worse and could even be life threatening,' Kay told listeners.

'It is horrifying when the medicines that ensure your child stays as healthy as possible are not around. It is really scary when there a massive shortage of drugs that could mean Josh going into status or ending up in hospital.

'We were fortunate that our GP spent a long time ringing round to find the right medication for Josh in another county and we managed to scrape by.'

Cause of drug shortages

A pharmacist from Essex, talking on PM, said the current shortage of drugs for cancer, hypertension and epilepsy, was unprecedented in 35 years.

A mixture of different coloured anti-epileptic medications

He said it was a complex issue but he believed the problem had partly been caused by a reduction in the number of manufacturers of generic drugs due to licensing issues.

The Times article reported that supply problems were forcing health officials to approve temporary price rises of up to 4,000 per cent to boost stocks. 'The NHS is spending more than £50 million a month overpaying for the medicines but pharmacies are still running out for days at a time and turning patients away,' wrote journalist Chris Smyth.

Professor Ley Sander, medical director at Epilepsy Society, said: 'The problem  at the moment is that there is a dearth of generic drugs available for epilepsy, so doctors are having to rely on branded drugs and that has a cost implication. At one NHS institution the monthly cost for epilepsy drugs has gone up by £3,000.

'Whenever there is a shortage of a particular medication we tend to get lots of calls from people who are naturally worried. However we have only had one call about supply of zonisamide recently.'

Previous problems

From August to September 2017, there were regular supply issues with epilepsy drugs including clobazam and levetiracetam. Epilepsy Society reported these via our website and social media with many of our supporters sharing their own experience of problems.

Clobazam is a category 2 drug according to guidelines on epilepsy drugs issued by the Medicines and Healthcare Regulatory Agency (MHRA). This means that the doctor and patient should decide whether it is important to stay on this drug or whether they can switch to an alternative version. Levetiractam is a category 3 drug which means it is considered safe to switch between different versions.

We know that a shortage of supply of epilepsy drugs can cause anxiety for people with epilepsy. For those whose seizures are controlled with a particular drug or combination of drugs, they fear that a change in versions could result in a breakthrough seizure with possible impact on driving, employment and education.

Many whose seizures aren't controlled fear their seizures may worsen if they have to switch to a different version of their drug.

What the Department of Health says

In September we contacted the Department of Health expressing the concerns  raised from our supporters about the shortages of certain epilepsy drugs.

Michelle McDaid from the government's MPD Parliamentary and Public Accountability, told Epilepsy Society: 'Manufacturers of medicines have a legal duty to ensure continuity of supply of medicines to UK patients. However supply issues do arise and DH is fully aware of the problems this can cause and acknowledges the concerns you have raised.

'The production of medicines is complex and highly regulated, and materials and processes must meet rigorous safety and quality standards.

'Difficulties can arise for various reasons, from malfunctioning equipment on the production line, to packaging materials that fail to meet the required specification.  Sometimes batch failures occur for no obvious reason, necessitating a thorough investigation to get to the root of the problem.  All of these can lead to shortages of medicines. 

'Shortages can also arise due to difficulties in obtaining raw materials, or from an imbalance between supply and demand.  If one manufacturer has a supply problem it can have a knock on effect to suppliers of other similar products.

'The globalisation of the pharmaceutical industry means that medicines are often manufactured in just one or two sites worldwide. Production schedules have to be planned months in advance and this, along with the move to "just in time manufacture" to reduce the cost of stockholdings, means that there is little flexibility in the system when problems do arise.  All of this means that some supply problems with medicines are inevitable.

'There is a team within DH which deals specifically with medicines supply problems, both in the community and hospitals.  It works closely with the MHRA, the pharmaceutical industry, NHS England and others operating in the supply chain to help prevent shortages and to ensure that the risks to patients are minimised when they do arise. 

Find out more

 Read the MHRA guidelines on switching between different versions of anti-epileptic medications.


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