Navigating Medicine Shortages

Navigating Medicine Shortages: How Narcolepsy UK is advocating for you

We know that recent shortages of medications used to treat narcolepsy and ADHD due to ingredient shortages, manufacturing problems and a general surge in demand have created significant challenges for many of you. These shortages impact your ability to manage your condition effectively and live your daily lives to the fullest. Our Chair, who is also affected by these shortages, has been actively engaging with various government agencies to address this critical issue. Here, we want to share what is happening, what we are doing to help, and the challenges we face.

What is Happening?

In recent months, there have been notable shortages of key medications used to treat narcolepsy and ADHD. These include methylphenidate, lisdexamfetamine, and dexamfetamine. While efforts have been made to manage these shortages, communication and actions have predominantly focused on ADHD, leaving narcolepsy and idiopathic hypersomnia patients struggling for support.

What Narcolepsy UK is Doing to Help

1.      Engaging with Government Agencies: We have been in engaged with the Department of Health and Social Care (DHSC) Medicine Supply Team and the Medicines and Healthcare products Regulatory Agency (MHRA) Safety Alert team. Our goal is to ensure they understand the severe impact these shortages have on our community and that we are adequately represented.

2.      Highlighting Key Issues:

o    Sole Focus on ADHD: We have emphasized that the past/current communications and actions are mainly addressing ADHD, neglecting the needs of those with narcolepsy and idiopathic hypersomnia.

o    Lack of Direct Contact: We have pointed out the lack of engagement with patient groups like Narcolepsy UK, which is crucial for understanding the real-life challenges faced by our members.

o    Communication Gaps: We have raised concerns about the effectiveness of the communication regarding these shortages and the resultant actions taken by sleep centres, healthcare providers and the British Sleep Society.

3.      Advocating for Better Guidance: We are pushing for the inclusion of narcolepsy and idiopathic hypersomnia in all relevant guidance documents. We want to ensure that the information and recommended actions are relevant to all affected patients, not just those with ADHD.

4.      Supply Management: The DHSC have agreed to invite Narcolepsy UK to the next patient association workshop on supply management.

The Challenges We Face

1.      Underestimation of Severity: There is a significant lack of understanding about how severe these shortages are for people with narcolepsy and idiopathic hypersomnia. This often leads to inadequate responses and support from healthcare providers.

2.      Licensing Issues: The focus on licensing for ADHD has led to a narrow approach in managing these shortages. For instance, while methylphenidate hydrochloride is indicated for narcolepsy, it is not licensed, complicating the communication of shortages to the right people

3.      Inconsistent Communication: The systems for disseminating information about shortages are not always reliable. National Patient Safety Alerts (NatPSA) and Medicine Supply Notifications (MSN) are supposed to ensure that healthcare providers are informed, but we have seen anecdotal evidence to suggest that, in some areas, these have not reached their target audience.

Moving Forward

We are committed to continuing our advocacy and engagement with all relevant parties to ensure that the needs of narcolepsy patients are not overlooked. We will keep pushing for better communication, broader inclusion in guidance documents, and more proactive engagement with patient groups.

How You Can Help

·         Stay Informed: Keep up to date with the latest information from Narcolepsy UK. We will continue to share updates and guidance as we receive them.

·         Share Your Experience: Your stories and experiences are powerful. They help us advocate more effectively on your behalf. Please share how these shortages are impacting you by contacting us via

·         Engage with Your Prescriber: Make sure your prescribers are aware of these issues and advocate for your needs. Direct them to our resources and updates if necessary.

We hope that by raising awareness and working together, we can drive changes that will improve the situation for all narcolepsy patients. Thank you for your ongoing support and patience as we navigate these challenging times.

Understanding the Roles of Different Agencies in Managing Medicine Shortages

Managing medicine shortages involves several key agencies, each with specific responsibilities.

Here’s a summary of their roles:

Department of Health and Social Care (DHSC)

·         Overall Responsibility: Ensures the continuity of medicine supply in the UK.

·         Medicine Supply Team (MST): Works with NHS England’s Commercial Medicines Unit, the pharmaceutical industry, and other stakeholders to prevent shortages and minimize risks to patients.

·         Risk Assessment and Action: Conducts thorough risk assessments when notified of potential shortages and determines appropriate actions.

·         Medicines Shortages Response Group (MSRG): A multi-disciplinary advisory body providing oversight and support for managing and communicating about shortages.

Medicines and Healthcare products Regulatory Agency (MHRA)

·         Regulation of Medicines: Responsible for the regulation of medicines in the UK.

·         Collaboration with DHSC and MSRG: Works closely with the DHSC’s MST and the MSRG, receiving information about potential shortages and participating in MSRG meetings.

·         Regulatory Support: May support manufacturers by utilizing regulatory processes to address shortages.

NHS Trusts and Healthcare Organizations

·         Dissemination of Alerts: Responsible for ensuring that all National Patient Safety Alerts (NatPSA) are cascaded to appropriate teams and services.

·         Action and Evidence: Must maintain evidence of alerts being acknowledged and appropriately actioned by their services, including sleep clinics.

Additional Resources

·         National Patient Safety Alerts (NatPSA): Disseminated via the MHRA’s Central Alerting System (CAS).

·         Medicine Supply Notifications (MSN): Provide specific updates on medicine shortages, with prescribing advice available through resources like NICE guidelines and the Specialist Pharmacy Service.

By understanding these roles, we can better appreciate the complexity of managing medicine shortages and the efforts being made to mitigate their impact on patients.

Useful references for clinicians and prescribers

1.      NICE guideline [NG87]. Attention deficit hyperactivity disorder: diagnosis and management

o    Link: NICE guideline NG87

o    Summary: This guideline from the National Institute for Health and Care Excellence (NICE) provides comprehensive recommendations for the diagnosis and management of Attention Deficit Hyperactivity Disorder (ADHD). It covers various aspects including identification, assessment, treatment options, and support for individuals with ADHD.

o    Relevance: This guideline is crucial for understanding the standard practices for managing ADHD, which indirectly impacts how narcolepsy treatments might be considered in the context of shared medications like methylphenidate.

2.      MHRA (2022). Methylphenidate long-acting (modified-release) preparations: caution if switching between products due to differences in formulations

o    Link: MHRA guidance on methylphenidate

o    Summary: This Medicines and Healthcare products Regulatory Agency (MHRA) guidance highlights the caution needed when switching between different long-acting methylphenidate products due to differences in their formulations. It provides detailed advice on the potential risks and necessary precautions.

o    Relevance: This document is significant for healthcare professionals managing patients on methylphenidate, including those with narcolepsy, as it outlines the considerations necessary to avoid adverse effects when changing medications.

3.      Specialist Pharmacy Service (SPS). Prescribing available medicines to treat ADHD

o    LinkPrescribing available medicines to treat ADHD

o    Summary: This page by the Specialist Pharmacy Service (SPS) provides guidance on prescribing alternative medicines for treating ADHD during shortages. It includes information on the availability of medications and considerations for switching treatments.

o    Relevance: The resource is particularly useful for clinicians seeking alternatives during medicine shortages, which is directly relevant to both ADHD and narcolepsy patients who use similar medications.

4.      Specialist Pharmacy Service (SPS). Considerations when prescribing modified-release methylphenidate

o    LinkConsiderations when prescribing modified-release methylphenidate

o    Summary: This guidance document from the Specialist Pharmacy Service outlines important considerations when prescribing modified-release methylphenidate. It covers aspects such as dosing, formulation differences, and patient-specific factors.

  • Relevance: This information is essential for healthcare providers to ensure safe and effective use of modified-release methylphenidate, which is relevant for managing narcolepsy as well as ADHD.

These resources collectively provide crucial guidance on managing ADHD, which intersects significantly with the treatment of narcolepsy due to the shared use of certain medications. They offer healthcare professionals the necessary information to navigate medicine shortages and ensure patient safety.