SUDEP Action

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Clinicians express concerns over medication shortages affecting patients



SUDEP Action have supported a Judicial Review against the Government for recently making changes to laws without following due process. The current law being undermined (the Human Medicines Regulation) protects patients with various safeguards to ensure they can access lifesaving medications as prescribed.

The Good Law Project is challenging these new permanent powers, which the Government hurriedly and privately passed, the ‘Serious Shortages Protocols’. The Protocol impacts on existing safety precautions– giving pharmacists power to change medications if UK supply runs short, without having to notify the original prescribing clinician, or without necessarily informing the patient themselves. These Protocols have been passed as a permanent law, without proper guidance to prescribing health professionals, or any information as to how medications would be protected from shortages.

Currently, epilepsy patients are already experiencing problems with supplies and accessing certain medications, leaving many of their health professionals in the dark about how best to support and reassure them.

Busy nurses, who are caring for patients, are having to call drug suppliers directly and in some cases hunt for medicines for children and adults. Often, these are some of the most vulnerable in our society, for example people with severe learning disabilities.  There is no early warning system for nurses regarding potential shortages, no communication and no guidance. Many nurses are reporting incidences where their patients, carers or GP’s are calling for advice about alternative medication because their prescription will run out in days and drugs are out of stock. This is happening now, despite recent governmental assurances to the contrary. The government has not explained the causes of medicines shortages to us or included us in any consultation. We are left in the dark to pick up the pieces and reassure patients. As nurses working to keep people with epilepsy well, we support SUDEP Action’s call for a public consultation and a patient-centred public framework for managing shortages and thank the Good Law Project for taking on this judicial review.” Phil Tittensor, The Epilepsy Nurses Association (ESNA)

With epilepsy, medication management can be a case of life or death for some, these changes could lead to a significant increase in epilepsy-related deaths across the UK. 21 epilepsy deaths happen weekly in the UK. Nearly 50% of these deaths are thought to be potentially avoidable with better risk and medication management; the new changes could see these figures rise even further.

Dr John Paul Leach (ILAE British Branch​) commented, "Everyone working with people with epilepsy is aware of the need for consistency of supply, dosing, timing, and formulation of anti-epileptic drugs. Any attempts to interfere with this are a dangerous retrograde step which can put patients at greater risk of harm from seizures - risks that include injury, burns, fractures and even mortality. We cannot sit by while the long held structures of protection of the individual's treatment are destroyed, either wilfully or by neglect. We advise doctors, nurses, and people with epilepsy to continue to work together. We would also urge the government to put in place measures to facilitate and protect our coalitions of care."

SUDEP Action, the UK’s only charity specialised in supporting and involving people bereaved by epilepsy, have provided a witness statement in support of this review - challenging the reckless way in which the Government’s plans have been made.

Jane Hanna OBE, CEO of SUDEP Action commented, “Clinicians, patients and the public are not ready for this Protocol. For people with high risk conditions, like epilepsy, we need to see them protected from medicine shortages, which at worst can cause injuries and deaths, and at best confusion and anxiety. 

We urgently need a risk or impact statement from Government about the causes of medical shortages and options for management in relation to no-deal or indeed any Brexit, but there isn’t one. Lives cannot be risked in this way because of short deadlines.”

The judicial review is due to be heard in the High Court later in March.


For further information and how to manage risks, please visit our Medicine Shortage information page.