Epilepsy Society Writes to Health Secretary Following a Death Linked to Medicine Shortages

The Epilepsy Society has written to Health Secretary Wes Streeting, following the death of a 44-year old man with epilepsy, after he was given an IOU for medication to control his seizures.

We have been campaigning relentlessly for the Government to commission a full review of the medicines supply chain, but the death of David Crompton from Yorkshire, has brought new urgency to the campaign. 

In a letter to Wes Streeting, our Chief Executive, Clare Pelham said: “It is critical that the global complexities that are contributing to shortages in the UK are resolved at speed so that another family does not experience a tragic bereavement. This is not a request for additional funding. It can be tackled with a handful of people applying their skills and expertise. The Epilepsy Society stands ready to help-as I know do many others.”

News of the tragic death of David Crompton follows the publication of the Government’s response to recommendations made by its Health and Social Care Committee in its inquiry into pharmacy in the UK.

We are pleased to see that the Government has confirmed its commitment to consider the need for a review of the medicines supply chain. However, we now believe the time is for action before there is another tragedy,

Our Head of External Affairs, Nicola Swanborough said: “We would hope that the sad death of David Crompton would be a wake up call to the Government that epilepsy medication can be the difference between life and death. No-one with epilepsy should have to worry about whether they will be able to get their medication. It should be a given that their meds will be available as prescribed and when needed. We need an end-to-end review of the supply chain now to ensure that another such tragedy does not happen again.”

Other recommendations in the Government response to the committee’s report include:

Recommendation 2: Review the effectiveness of Serious Shortage Protocols (SSPs). 

The Committee recommended that the Government review the effectiveness of SSPs, with particular focus on their timing and the administrative burden they impose. The Government clarified that SSPs are only used in the case of a serious shortage and are only used if both clinicians and ministers believe it is appropriate to do so. The Government partially accepted the recommendation, noting that it will keep this policy under review. The medicine supply chain is very complex and a number of issues can arise which impact a patient’s access to medicine. Epilepsy treatments have in part been excluded from this type of protocol as the Government understands that switching a patient with epilepsy between different therapeutic or generic versions of their drug could have an adverse effect. However in extreme circumstances it may be necessary to prescribe an alternative strength or reduced quantity of medication. 

Recommendation 4: Allowing Generic Substitution as a way of reducing the need for patients to return to their GP for out of stock medication. 

The committee further recommended the introduction of generic substitution. Generic substitution is the term applied to the substitution of a prescribed branded drug by a different form of the same active substance. It suggested that this should follow a government consultation focusing on how best this policy could be implemented to ensure patient safety and avoid the potential for unintended impacts on the supply chain. The Government rejected this recommendation on the basis that the Human Medicines Regulations 2012 (HMRs 2012) require pharmacists to dispense “in accordance with a prescription”. It also acknowledges that there could be ‘good clinical reason’ as to why a patient must be maintained on a specific manufacturer’s product as is the case with epilepsy; switching brand or dosage can increase the risk of breakthrough seizures. We are pleased to see that the Government has recognised the specific challenges faced by people with epilepsy. 

Recommendation 5: Impact of National Patient Safety Alerts (NPAs)

The committee recommended that the Government should clarify the impact of NPSAs on private prescribing and outline what scrutiny and enforcement measures are in place to ensure private prescribers adhere to these alerts. NPAs are notices from NHS England that share information about risks that can cause serious harm or death. The Government accepted the recommendation stating that the Government expects providers of healthcare services and those with responsibility for prescribing to take appropriate account of national guidance. Professional regulators have issued joint statements making clear that all prescribers, regardless of employer, should take into account NPSAs and other public health considerations when making prescribing decisions. Pharmacists must make difficult decisions when medicine shortages hit, which can lead to issues in prescribing medicine however it is crucial that issues in the supply chain are addressed quickly and effectively if an NPA is issued to pharmacies to mitigate risks to patients with epilepsy if alternative brands or dosages must be prescribed. Pharmacies and suppliers should act quickly to ensure patients with epilepsy are not left without medication. 

Recommendation 6: Independent Review of the Medicines Supply Chain 

The committee called for an independent review of the medicine supply chain which should be conducted as soon as possible and completed within 6 months of starting. The review should assess, and suggest ways of improving, the resilience of the supply chain, the performance and role of the MHRA and the impact of prices paid for medicines and community pharmacy reimbursement mechanisms. In its response the Government highlighted a number of issues, noting that this issue is not unique to the UK. The Government points to a number of mechanisms that are already in place to mitigate these issue however it acknowledged the recommendation and said it will continue to consider conducting a review of the medicine supply chain.

Our Call for a Review of the Medicine Supply Chain 

Epilepsy Society along with Epilepsy Action, Parkinson’s UK and SUDEP action are calling for an urgent review into the medicine supply chain. Medicine shortages are increasingly affecting patient care, with many essential drugs in critically short supply. If the issue is not resolved more patients’ health will be at risk. Earlier this year, we conducted a survey and found 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. Additionally, 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. Concerningly, nearly 40 per cent of respondents with epilepsy reported having seizures induced by having to switch or skip medication. It is positive that the Government has acknowledge this recommendation and will consider conducting a review however we believe urgent action is needed to prevent further impacts on patient care. 

How you can help 

We are writing to the Wes Streeting, Secretary for Health and Social Care calling for an end-to-end review of the medicine supply chain. So far we have almost 40 MPs who have signed our letter in support of our call. We are also asking our supporters to write to their MPs to request they write to Karin Smyth, Minister for Health to raise this issue and support our call. You can do so by following this link. 

We hope that the Government will act fast to end the medicine shortages crisis we are currently facing so that no patient has to go without life-saving medicine.