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Pressure on party leaders to fix medicine shortages


SUDEP Action is continuing to work with Epilepsy Society, Epilepsy Action and Parkinson's UK to improve access to life-saving medicines.  

This week, the coalition of organisations wrote to Conservative Party leader, the RT Hon Rishi Sunak; Labour Party leader, the RT Hon Sir Keir Starmer and Liberal Democrat leader, Sir Ed Davey - to urge them to prioritise the issue of medicines supply and urgently develop long-term solutions to resolve this critical problem' should they take up office on July 5. 

The letters in full read as follows: 

Dear Party leader 

We write to you as a coalition of patient charities to raise our concerns over issues with medicines supply and ask that you take early action to address this matter should you take up office on 5 July. Medication shortages are a serious ongoing problem for people with long-term health conditions, and in particular those living with epilepsy and Parkinson’s where a consistent supply of medicine is vital to maintaining well-being and safety.

A recent report by the Nuffield Trust showed that medication shortages have unfortunately 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 impending drug shortages reported by drug companies has doubled. Price concessions have risen sharply and the UK’s ability to respond to shortages has been severely weakened by its split from the EU.

Despite efforts to date by the Department of Health and Social Care and NHS England to improve and resolve the medicine supply issues for people with epilepsy and Parkinson’s, patients continue to be significantly impacted by ongoing supply chain issues. This has been highlighted extensively in the media, including reports by the BBC, Sky, ITV and Channel 5 News. Urgent action is needed to provide a permanent solution.

In recent months, helplines at Epilepsy Society, Epilepsy Action, SUDEP Action and Parkinson’s UK have been inundated with calls from people who are desperate to find a pharmacy that can fulfil their prescription. People are being forced to travel miles and visit multiple pharmacies before they are able to access their medication.

All too often they are being asked to make do with a fraction of the medication required, or to switch brands - which can be particularly problematic for people with both conditions. The stress and uncertainty are causing seizures in people with epilepsy which impact employment, education and the ability to drive. Seizures can be fatal but many epilepsy deaths are preventable, with regular access to medication being the first line of defence.

Sadly, many people aren’t getting a regular epilepsy review and are therefore unaware of the potential risks posed by a lack of medication.

This spring, we carried out a survey of almost 1,500 people with epilepsy and Parkinson’s to understand the full extent of the problem and the results were very worrying:

  • 70% of respondents had had difficulties getting vital medication over the past year
  • 22% reported problems in the last 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.

It makes for very grim reading and the problem is not new. We believe that the whole of the medicines supply chain needs urgently reviewing. We need clarity and a guarantee that pharmacists will be able to dispense the medications people with long-term health conditions need.

Preparation for Brexit meant that all drug manufacturers were required to have a minimum six-week stockpile of medications to ensure continuous supply for patients. It showed that the

system could work more efficiently when challenged. Today, it would seem that the industry has reverted to a ‘just-in-time’ model. We appreciate that the problem is multifactorial and that the supply chain is complex. But so are epilepsy and Parkinson’s.

The two conditions both pose huge challenges for people on a daily basis, but the one given is that they should be able to access – without question – their life-saving medication.

On behalf of the 800,000 people with epilepsy and Parkinson’s in the UK, should you take up office on 5 July, we would urge you to prioritise addressing the issue of medicines supply and urgently develop long-term solutions to resolve this critical problem.

Yours sincerely,

Jane Hanna, SUDEP Action

Alison Fuller, Epilepsy Action

Nicola Swanborough, Epilepsy Society

Juliet Tizzard, Parkinson’s UK