Charities and pharmacists call for medicines supply chain review as shortages continue
The Epilepsy Society has joined forces with other health charities and pharmacists to tell the government to fix the medicines supply chain as new data shows drug shortages are putting patients’ health at risk.
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Charities and community pharmacists have issued a stark warning to the government – fix the medicines supply chain or the continuing drug shortages crisis will put more patients’ health at risk.
The warning comes as new data from charities supporting people with epilepsy and Parkinson’s shows that 70 per cent of respondents have had difficulties getting hold of vital medication over the past year, with nearly a quarter (22 per cent) reporting problems in the last month. Over half (55 per cent) needed to visit multiple pharmacies before getting hold of their medication, and two-thirds were only given a fraction of the amount that was on their prescription to tide them over until more supplies were available.
And the Association of Independent Multiple Pharmacies (AIMp) reports that community pharmacists are spending two hours every day trying to track down potentially life-saving medications for patients.
The AIMp, together with charities, the Epilepsy Society, Epilepsy Action, SUDEP Action and Parkinson’s UK, are calling for a complete review of the medicines supply chain and say that unless there is greater openness between government and manufacturers, medicine shortages will never be resolved and patients’ health will be at risk.
Rationing medication
The survey also paints a troubling picture of the knock-on effects of people either having to ration their medication or temporarily take a different brand or version of the drug due to supply issues.
For both patients with epilepsy and those with Parkinson’s, around half were given a different brand or version of their medication, and 40 per cent saw a worsening of symptoms that they attributed to the stress of trying to get their prescription filled. Nearly 40 per cent of respondents with epilepsy reported having seizures induced by having to switch or skip medication, and 36 per cent of respondents with Parkinson’s said that facing this difficult choice led to their symptoms worsening.
People with epilepsy risk breakthrough seizures if they don’t have a continuous supply of medication. In severe cases, seizures can be fatal. For people with Parkinson’s, skipping medication or even delaying dose times can lead to a worsening of symptoms and serious side effects.
Medicines supply chain is broken
Dr Leyla Hannbeck, Chief Executive of the AIMp said: “The medicines supply chain is broken at every level and unless the Department of Health reviews its processes and procedures, we will never achieve the stability that will guarantee patients their prescription when they need it.
“The UK has a smaller medicines budget than anywhere else in Europe or the US. The NHS is continually driving down the price of medications, which means that manufacturers prefer to sell outside of the UK where they can make a better profit.
“The system is overly complex and shrouded in secrecy – what we need is openness and transparency. Pharmacists are in the same position as patients – we are at the end of the supply chain but are the last people to find out about medication shortages. Consequently, we are unable to plan in advance and support the people who rely on us for their medications.”
Call for meeting with Health Secretary
The charities and pharmacists are calling for an urgent meeting with the Health Secretary, Victoria Atkins. In spite of a statement from the Department of Health saying that they have taken swift action to improve the supply of medication for epilepsy and to resolve shortages of Parkinson’s medications, the charities say the system needs to be more robust.
Clare Pelham, Chief Executive at the Epilepsy Society, said: “Having a long-term condition such as epilepsy can present many challenges including seizures and the physical harm they can cause, loss of your driving licence and daily anxiety about potentially risky behaviour like pouring a kettle or taking a bath.
“But the challenges should not include a struggle to get a prescription for what can be a life-saving medication. This has to be a fundamental right and whichever government comes to power at the next election, they must make it a priority to work with charities and pharmacists to ensure that the medicines supply chain is robust. And that people can access their medication when they need it.
“People often talk about a postcode lottery in healthcare. But what we have here is much worse. It is an international lottery. Put quite simply, you are more likely to experience shortages of your potentially lifesaving epilepsy medication if you live in Britain than in many other comparable countries.
“The Government needs to take action now. Delay might quite literally cost lives.”
Irreversible deterioration
Juliet Tizzard, Director of External Relations at Parkinson's UK, said: "The failing medicines supply chain is harming people with conditions like Parkinson's. Being unable to get hold of a drug you rely on to manage your condition can cause your symptoms to deteriorate, sometimes irreversibly. It can result in difficulty moving, pain and additional distress and anxiety. We've heard from many people with Parkinson's who have been forced to make their medication last longer than intended and visit multiple pharmacies in an attempt to get their vital drugs.
"The government must review the medicine supply chain and work with charities and people living with these conditions to ensure that people can access their medication when they need it. The failing system is causing avoidable harm to people already living with challenging conditions."
Risk of sudden death
Sammy Ashby, Chief Executive of SUDEP Action, said: “We are concerned that many people with epilepsy are being badly let down and exposed to intolerable levels of risk. The generic switching of medicines from one brand to another is hugely concerning – and those with epilepsy, who this is happening to, are telling us they are frightened. There are more than 40 different forms of epilepsy and no single treatment. Everyone’s epilepsy is different. Ensuring people have easy access to the right medications for their epilepsy is so important for controlling seizures, so they can live safely.
“These worrying shortages in epilepsy medicines are happening against a backdrop of rising NHS waiting lists and further restrictions on access to medicines due to changes in national medicines policy. Sadly, too many people still underestimate or ignore the risks of epilepsy; failing to recognise that medicines are the first line of defence against preventable epilepsy deaths, including SUDEP (Sudden Unexpected Death in Epilepsy).”
Clarity on causes and a straight answer
Rebekah Smith, Deputy Chief Executive at Epilepsy Action, said: “The journey to finding the right medication is often a tough one for people with epilepsy. When they do find it, they should not have to fear the security it gives being taken away by factors totally out of their control.
“They shouldn’t have to be anxious about running out of their medication and not being able to find the next dose. They shouldn’t have to travel miles and miles to find it. They shouldn’t have to worry about switching to a different one that could bring side effects, not keep their seizures under control, or even cause a breakthrough seizure when they’ve not had one for years.
“Our Helpline team has listened to the worries and struggles of so many people this year. They deserve to know why this is happening, and when it’s going to get solved.
“We need clarity on the causes and a straight answer on how this issue is going to get tackled, and this is why we’re joining other charities and associations in calling on the government to take action, now.”
Department of Health responds
A Department of Health and Social Care Spokesperson said: “We have taken swift action with NHS England and other stakeholders to improve the supply of epilepsy medications and access to some has already improved while we expect supplies of others to improve in the coming months.
“We have issued guidance to health professionals on how to support patients whilst supply is disrupted.
“All issues with the supply of medication for Parkinson’s disease have now been resolved.”
Further information
If you are experiencing trouble accessing your medication, please read our Medication Updates page for advice and latest updates.