Dear Friends and Members,
We are delighted to extend an invitation to you for our webinar on Trigeminal Neuralgia, hosted by myself and featuring Professor Manjit Matharu.
Mark your calendars for Thursday, 16th May, from 7:30 to 8:30 PM.
Professor Matharu will deliver his presentation titled “My Practical Approach to Trigeminal Neuralgia”, addressing the clinical presentation, diagnostic criteria, and therapeutic strategies for this condition. His focus on nuanced diagnostics and state-of-the-art treatment options is essential for both patients and healthcare professionals seeking the latest best practices. This webinar is designed to provide insights into managing and understanding trigeminal neuralgia, which will be of significant interest to all of us.
Professor Manjit Matharu is a Professor of Neurology at UCL Queens.
Medication
“I can’t get my prescription”
Reflecting on the impact of medication shortages, particularly for those suffering from trigeminal neuralgia (TN) and facial pain, the situation is deeply concerning. For many Carbamazepine and other medications crucial for managing TN, have been notably affected. Ensuring that medications are consistent in dosage and release is essential, but these standards are at risk due to current shortages.
The Risks of Inconsistent Medication Supply
The issue known as “pharmacy bingo,” where patients have to visit several pharmacies to find their medication, shows just how serious the situation is. Health leaders report that some patients must use less medication than needed, a problem that has become common in many of England’s pharmacies, according to Community Pharmacy England.
Janet Morrison, Chief Executive of Community Pharmacy England, described the situation as extreme and a constant struggle for pharmacies, affecting patients daily and leading to frustration and anxiety.
A survey by Community Pharmacy England, which included over 6,000 pharmacies and 2,000 staff, found that nearly all pharmacies face supply problems at least once a week, with 72% experiencing multiple problems daily. These shortages are causing major disruptions, with 97% of pharmacy staff reporting that patients were inconvenienced, and 79% saying that patient health was at risk.
Paul Rees, head of the National Pharmacy Association, has called on the government to urgently fix the UK’s fragile medicine supply system: “It’s important that pharmacies can fulfil their role and patients can access their lifesaving medicines promptly.
I have written to the minister:
“As someone who has witnessed the debilitating impact of trigeminal neuralgia, I can confidently say it is among the worst pain many medical professionals have ever encountered. Our members’ need for consistent access to medication isn’t just a necessity—it’s critical. They must be prioritised to ensure that they can manage their conditions effectively and maintain their quality of life.”
Aneeta Prem MBE
Norfolk Group Meeting Highlights
I am pleased to report that our recent in-person meeting with the Norfolk group at The Forum was highly successful. We addressed crucial topics such as coping with pain and the current shortage of prescription medications, notably Carbamazepine.
It is essential to ensure that medications from different manufacturers maintain consistent dosage and release properties, as these factors significantly influence treatment effectiveness.
Moreover, we explored the challenges of loneliness and isolation, significant issues that affect many in our community. These gatherings, whether online or in-person, are vital for connecting and supporting each other, underscoring the importance of our community engagement.
Considering a Legacy
Will Writing
As we continue to support and expand our community, please consider the significant impact that leaving a legacy can have. Including the Trigeminal Neuralgia Association in your will can ensure that future research and support systems continue to thrive. If you are considering this option and need more information or support on how to include a legacy gift in your will, please do not hesitate to contact us.
We provide a professional free, simple will-writing service available to you.
Contact Paul Burton at Wills of York on 01759361971 or Heather Morris [email protected]
0800 999 1899 option 2
We look forward to seeing many of you next Thursday for what promises to be an essential session. Your participation and insights are invaluable to the strength of our community.
Warm regards,
Aneeta
Aneeta Prem MBE
CEO
