Coalition of orgs ask for urgent meeting with new Health Secretary

SUDEP Action has put its name to a letter urging Wes Streeting, the new Secretary of State for Health & Social Care, to meet to discuss critical medicine supply issues.

The letter has also been signed by the Epilepsy Society, Epilepsy Action and Parkinson’s UK.

The letter states: “As you may be aware, medication shortages are a serious ongoing issue for people with long-term health conditions. A recent report by the Nuffield Trust showed that medication shortages had become the ‘new normal’ in post-Brexit Britain, with a ‘shock rise’ in shortages of life-saving drugs such as anti-seizure medications.

In the last three years, the number of drug shortages reported by drug companies has doubled. Price concessions have risen sharply, with products costing £220 million more within one year. And the UK’s ability to respond to shortages has been severely weakened by its split from the EU.”

This spring, the collaborating organisations conducted a survey of almost 1,500 people with epilepsy and Parkinson’s to understand the full extent of the problems. The findings included:

• 70% of respondents have had difficulties getting vital medication over the past year.

• 22% report problems in the previous month.

• 55% had to visit multiple pharmacies before getting hold of their medication.

• 66% were only given a fraction of the amount that was on their prescription until more supplies were available.

• 40% saw a worsening of symptoms that they attributed to the stress of trying to get their prescription filled.

• Almost 40% of respondents with epilepsy reported having seizures induced by having to switch or skip medication.

• 36% of respondents with Parkinson’s said that facing this difficult choice led to their symptoms worsening.

The organisations believe the whole of the medicines supply chain needs urgently reviewing because there must be more clarity and a guarantee that pharmacists will be able to dispense the medications people with long-term health conditions desperately need.

The letter says, “On behalf of the 800,000 people with epilepsy and Parkinson’s in the UK, as the newly appointed Health Secretary, we would urge you to meet with us to discuss the worrying issue of medicine supply and develop long-term solutions to resolve this critical problem.”

See the full letter, Read here