The Risks of Inconsistent Medication Supply


The Risks of Inconsistent Medication Supply

 

“Pharmacy bingo,” where patients must visit multiple pharmacies to find their medication, starkly illustrates the severity of the issue. Community Pharmacy England reports that some patients are forced to use less medication than needed, a common issue in many of England’s pharmacies.

 

Janet Morrison, Chief Executive of Community Pharmacy England, describes the situation as a constant struggle, profoundly affecting patients daily and leading to significant frustration and anxiety.

A survey involving over 6,000 pharmacies and 2,000 staff revealed that nearly all pharmacies face supply issues at least weekly, with 72% experiencing multiple problems daily. These shortages not only inconvenience patients but also jeopardise their health, with 79% of pharmacy staff noting that patient health is at risk.

 

Paul Rees, head of the National Pharmacy Association, has urged the government to urgently reform the UK’s fragile medicine supply system to ensure pharmacies can fulfil their roles and patients can access their essential medications promptly.

 

The ongoing medication shortages expose deep systemic issues and pose significant health risks, particularly to individuals reliant on consistent medication access.

 

For those with trigeminal neuralgia and other facial pain disorders, these disruptions can lead to severe pain episodes and may even necessitate emergency care, underscoring the urgency of this health issue.

 

Practical Guide for Managing Medication Shortages

 

If you’re facing medication shortages, here are some effective steps to manage them:

 

Consult Your GP: Discuss potential substitutions with your GP, particularly if they differ in strength or formulation. They can adjust your dosing schedule accordingly.

 

Check Multiple Pharmacies: Do not limit yourself to one pharmacy. Explore large chains and independent pharmacies, which may have different stock levels.

 

Understand Medication Types: Familiarise yourself with the differences between extended-release and immediate-release medications. Extended release provides steady effects, while immediate-release acts quickly but may require more frequent dosing.

 

Monitor for Side Effects: Be vigilant about

medication shortage
medication shortage

new or worsening side effects when switching medications and report them to your GP.

 

Regular Follow-up: Maintain regular check-ins with your GP to assess the effectiveness of any new medication and make necessary adjustments.

 

Educate Yourself: Read the patient information leaflet included with your medication to understand proper usage, potential side effects, and other critical information.

 

Inform Your GP: Keep your GP updated about any shortages. They can prescribe alternatives or approve substitutions if your usual medication is unavailable.

 

Plan Ahead: Reorder your prescriptions well in advance to avoid running out of medication.

Seek Support: Contact patient advocacy groups for advice. They often have current information on medication availability.

 

Stay Informed: Keep up-to-date with medication supply news to better anticipate and manage your needs.

 

As someone deeply committed to addressing these issues, I have written to the minister to highlight these problems and am actively seeking solutions to ensure those affected by trigeminal neuralgia and facial pain receive the reliable care they need.

 

“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 they can manage their conditions effectively and maintain their quality of life.”

 

Understanding Trigeminal Neuralgia (TN)

Understanding Trigeminal Neuralgia (TN)
“The Excruciating Reality of Facial Pain”

What Is Trigeminal Neuralgia?
Trigeminal Neuralgia is acknowledged by medical professionals as one of the most severe pain syndromes known to medical science, characterised by intense, stabbing facial pain. This chronic condition specifically affects the trigeminal nerve, one of the head’s most broadly distributed nerves. It is responsible for transmitting sensations from the face to the brain.

Key Symptoms:

The Devastating Impact of the Disorder: Trigeminal Neuralgia is notorious for the debilitating pain it inflicts, often disrupting daily activities due to its abrupt onset and frequency of attacks. The intensity of the pain is so profound that it significantly diminishes the quality of life for sufferers.

Causes of TN:

Treatment Options:

Challenges of Living with TN: The unpredictable nature of trigeminal neuralgia, coupled with the intensity of the pain, often leads to considerable psychological distress. This can manifest in anxiety, social withdrawal, and profound isolation.

How Can You Contribute?

Your Support Matters!
Every donation and gesture of support provides crucial resources and hope to those suffering from this intense condition. Together, we can strive for better treatments and a future free from the pain of Trigeminal Neuralgia.

For more information, to offer support, or to make a donation, please visit: TNA UK’s website

“Turning Pain into Hope: Your Support Can Change Lives.” Aneeta Prem MBE


Dear Members and Friends,

I hope this message finds you well. Our recent webinar with Dr. Mark Weatherall on the history of trigeminal neuralgia has sparked engaging discussions and has been notably well-received. As Easter approaches, it provides an opportune moment for us to reflect on our progress and future aspirations.

Despite prevailing financial challenges within the charity sector affecting donations, our dedication to supporting those with TN and facial pain has not waned. Your continued support plays a crucial role in sustaining our services, which include:

Feedback highlights include appreciation for the clarity and support provided by our helpline, the invaluable connections made through our support meetings, the informative content of our webinars, and the impact of donated memberships on individuals’ journeys with TN.

A special thank you to our volunteers participating in the Neoma Libra trial, emphasizing its significance to our community.

This Easter, as we navigate the demand for donated memberships and economic constraints, your support remains essential.

Thank you for your commitment. Together, we continue to make a meaningful difference in the lives of those affected by trigeminal neuralgia and facial pain.

Wishing you a Happy Easter,

Aneeta Prem

Research Libre Study

I am privileged to share with you the strides we are making in supporting groundbreaking research into Trigeminal Neuralgia (TN). Our commitment to advancing the understanding and treatment of TN is unwavering, and the Libra Study stands as a testament to this dedication.

The Libra Study, a Phase II/III multicentre clinical trial approved by the Medicines and Healthcare Products Regulatory Agency (MHRA) and an ethics committee, is at the forefront of exploring the efficacy and safety of Basimglurant. This innovative medication, targeting the mGlu5 receptors, offers new hope in mitigating the neural overactivity and pain associated with TN, especially for those who have found little relief with existing treatments.

Understanding the importance of well-informed support and advocacy, we took the initiative to organise a comprehensive training session in London for all our helpline volunteers and regional support leaders. This training was meticulously designed to arm our team with the necessary knowledge to field questions about the trial and to assess its potential benefits for our members. Such informed dialogue is crucial in navigating the complexities of TN treatment options.

The trial itself is structured to rigorously assess Basimglurant’s potential, comprising an initial 8-week run-in phase for dosage adjustment, followed by a 12-week double-blind phase, and culminating in a 52-week open-label extension phase. This meticulous approach ensures a thorough evaluation of the treatment’s efficacy and safety.

Eligibility for the study is thoughtfully considered, extending to adults between 18 to 75 years diagnosed with primary or idiopathic TN. It underscores our aim to reach those most in need of new treatment avenues. The study’s reach, spanning across multiple countries, not only reflects its global impact but also TNA UK’s commitment to fostering international collaboration in TN research.

Moreover, the Libra Study emphasises patient support by covering all related travel and medical expenses, ensuring that participation is accessible to all eligible individuals. This approach is reflective of our broader ethos at TNA UK, where the well-being of our members is paramount.

The feedback from our community has been profoundly positive, with members expressing gratitude for the opportunity to participate in such pivotal research. One member’s words resonate deeply: “A big thank you to our lovely TN association for telling me about the trial. I feel like I can do something for all my fellow sufferers. I am going into the trial full of optimism and hope.” This sentiment captures why we champion such research: to offer hope and make a tangible difference in the lives of those affected by TN.

In closing, the support of our members and the wider community is invaluable as we continue to back significant research endeavours like the Libra Study. It is through these collective efforts that we move closer to uncovering new treatments and ultimately improving the quality of life for those living with Trigeminal Neuralgia.

 

Happy New Year

Happy New Year from all of us at TNA UK! As we step into 2024, we’re proud to announce several new initiatives aimed at enhancing our community support and engagement. With our recent rebranding, we’ve adopted a fresh, contemporary approach. This update is complemented by our new range of merchandise, which includes elegant lanyards, practical medical alert cards, and unique badges. These items are more than just functional; they represent our shared commitment and the progress we’re making together.

This year, we’re also focusing on providing essential support through our helpline and friendship line. These services are available for anyone experiencing loneliness or in need of assistance, reflecting our commitment to being a supportive community presence.

In addition, we’re excited to resume our face-to-face regional support meetings. These gatherings are crucial for creating personal connections, fostering discussions, and building a network of mutual support. Your participation in these meetings is invaluable, as they offer a great opportunity for engagement and community building.

Our helpline remains a key resource for those seeking support. Staffed by trained professionals, the helpline offers advice, support, or a friendly conversation to those who reach out.

As the year progresses, we look forward to your active participation in our initiatives, whether it’s through engaging with our services or attending our events. Your involvement is essential to our continued success and growth.

Here’s to a year of positive impact and strengthened community connections.

International Trigeminal Neuralgia (TN) Awareness Day 7 October

International Trigeminal Neuralgia (TN) Awareness Day 7 October

I am incredibly proud to unveil our next chapter in the fight against trigeminal neuralgia: the ‘#ShowTN3Fingers’ campaign. As a natural extension of last year’s ‘Face of TN’ initiative, our new campaign aims to expand the conversation around this debilitating condition. We believe that education and awareness are the building blocks of empathy and, eventually, change.

Why ‘#ShowTN3Fingers’ Matters

This campaign isn’t just a hashtag; it’s a learning moment for us all. By showing three fingers, we represent the three main branches of the trigeminal nerve—V1, V2, and V3—each responsible for a unique form of agony. It’s an educational gesture that speaks volumes.

The Medical Community: Your Endorsement Is Crucial

To my esteemed colleagues in the healthcare sector, I urge you to lend your voice and clinical expertise to this cause. Your participation elevates this campaign from a grassroots effort to an authoritative movement.

Hidden No More

Trigeminal neuralgia is often referred to as a ‘hidden disability,’ but with this campaign, we aim to shine a spotlight on it. We want to break down the walls of stigma and loneliness that so many patients face, offering them a beacon of hope.

Join Us: Here’s How

Your participation can take many forms:

Social Media: Use the hashtags #ShowTN3Fingers and #FaceOfTN to make your voice heard.
Video Testimonies: We welcome short reels explaining why you or your loved ones are involved in this campaign. Your story could be the one that educates and inspires others.
Donations: While our primary currency is awareness, financial contributions help maintain our helplines and sponsor regional events aimed at destigmatizing TN. Every donation brings us a step closer to a world free from the anguish of trigeminal neuralgia.
The Time Is Now

As we count down to International Trigeminal Neuralgia Awareness Day on the 7th of October, let’s harness this occasion to drive meaningful change. We’ve been given a platform and a voice; it’s our collective responsibility to use them wisely.

Let’s not miss this chance to act. Together, we can transcend the boundaries of medicine and advocacy to create a more informed and empathetic society. Join us, share the ‘#ShowTN3Fingers’ campaign, and let’s make this International TN Awareness Day a watershed moment in the fight against trigeminal neuralgia.

Looking forward to an impactful day and a brighter future.

Best wishes, Aneeta Prem MBE CEO

Trigeminal Neuralgia Hope

Trigeminal Neuralgia Hope

 

Trigeminal Neuralgia (TN), a neurological condition causing excruciating facial pain, leaves those afflicted with feelings of isolation and despair. However, amidst this, there is hope – the Trigeminal Neuralgia Association (TNA). The charity has been a lifeline for individuals battling TN, providing a supportive and nurturing environment.

Understanding Trigeminal Neuralgia: A Journey of Pain

Trigeminal Neuralgia is characterised by sudden, stabbing facial pain, triggered by seemingly innocent actions like chewing or talking. The intensity of this pain can be overwhelming, leading to immense distress for those experiencing it. It is a rare condition that affects one’s quality of life, leaving individuals in search of understanding and support.

The Trigeminal Neuralgia Association (TNA)

In the midst of this, the Trigeminal Neuralgia Association (TNA) is committed to supporting those affected by TN and face pain.

We provide vital resources, raising awareness, and creating a sense of community among patients, caregivers, and medical professionals.

Transformative Stories of Resilience

Five members   who have found help and strength through TNA:

  1. E.L., a resilient TN patient, once felt utterly alone in her battle against the condition. She recalls, “The pain was isolating, but when I discovered TNA’s supportive community, I found a lifeline. The helpline connected me with others who truly understood my struggles. Now, I feel like I belong.”
  2. A.J., a strong advocate for regional support groups, recognized the importance of face-to-face interactions. He says, “Meeting in person enhances empathy and understanding among TN patients. Through regional support groups, we share experiences and coping strategies, fostering unity among our members.”
  3. M.L., a courageous TN patient, shares how TNA has been a lifeline during her saddest moments. She says, “TNA provided me with coping mechanisms, resources, and most importantly, a support network that helped me endure the pain. With their help, I found strength and resilience.”
  4. S.M., an enthusiastic member of TNA, cherishes the joy of being part of a compassionate community. She shares, “TNA’s gatherings and virtual events offer a sense of belonging and a network of friends who offer unwavering support. Community engagement is a powerful tool for healing.”
  5. J.T., a compassionate individual who witnessed her loved one’s struggle with TN, decided to make a difference. She emphasises, “Supporting each other in our TN journey is crucial. TNA’s regional support groups have been a source of comfort and understanding. Together, we find hope in the face of pain.”
The Power of Community: A Journey Towards Healing

TNA’s transformative power lies in its ability to foster hope and resilience among those affected by trigeminal neuralgia. By providing empathy, education, and support, the organization has contributed to improved patient care and reduced feelings of isolation. The stigma surrounding TN has also been diminished, encouraging individuals to seek help without hesitation.

Conclusion: Embracing the Light of TNA

Trigeminal Neuralgia can cast a shadow of pain and despair over its victims. However, the transformative power of community, exemplified by the Trigeminal Neuralgia Association (TNA), offers hope. E.L., A.J., M.L., S.M., and J.T.’s stories are testaments to the profound impact TNA has had on those battling TN. By providing support, advocacy, and camaraderie, TNA has become a beacon of light, guiding individuals towards a journey of healing and hope.

FAQs

  1. What is Trigeminal Neuralgia? Trigeminal Neuralgia is a neurological condition causing intense facial pain, triggered by everyday actions like chewing or talking.
  2. How can I get involved with TNA? You can support TNA by becoming a member, volunteering, or contributing to their initiatives.
  3. Are there effective treatments for Trigeminal Neuralgia? Treatment options include medications, surgical procedures, and alternative therapies, though effectiveness varies among individuals.
  4. Does TNA offer resources for caregivers? Yes, TNA provides resources and support for patients and caregivers, helping them navigate the challenges of Trigeminal Neuralgia.
  5. Can joining TNA’s community make a difference? Absolutely! The supportive and compassionate community within TNA can make a profound difference in the lives of those struggling with TN.

National Volunteers Week

 

National Volunteers Week

Thank you  Volunteers Assisting the Trigeminal Neuralgia Association

During the esteemed National Volunteers Week, it is my utmost pleasure to convey our appreciation to the dedicated volunteers who wholeheartedly support the Trigeminal Neuralgia Association (TNA) and the facial pain community.

These exceptional individuals,

many of whom bravely face the challenges of Trigeminal Neuralgia (TN) or facial pain themselves, provide invaluable assistance by selflessly manning the helpline, email helpline, and organizing regional support groups.

By diligently attending the helpline and email helpline day in and day out, you become the compassionate voice of empathy.

Offering solace and understanding to those grappling with TN and facial pain. Your personal experiences enable you to provide not only comfort and support but also invaluable firsthand knowledge and insights, guiding sufferers through their darkest moments.

 The volunteers who lead

Coordinate the regional support groups. These dedicated leaders, often enduring these conditions themselves, create safe and inclusive spaces for individuals experiencing facial pain and Trigeminal Neuralgia.

Through your efforts, you bring people together, fostering a sense of community, understanding, and healing.

The helpline, email helpline, and regional support groups serve as lifelines for those seeking support and reassurance.

The empathy, care, and unwavering dedication you demonstrate leave an indelible impact on the lives of individuals affected by facial pain and Trigeminal Neuralgia.

National Volunteers Week, we sincerely hope that the public recognizes the indispensable role you play within our community.

 

Each call answered every email attended, and every regional support group meeting organized and led to contribute to the cause we ardently champion.

Thank you.  Your selflessness and unwavering dedication have made an immeasurable difference in the lives of countless individuals.

If anyone would consider volunteering for us.

We would love to hear from you. You could help on the telephone or email helpline. Run a Regional support group for fundraising.

We have many great opportunities and we will be grateful for your time and commitment

Please contact us we look forward to welcoming you to the TNA facial pain charity.

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The Importance of Support

I recently had the privilege of meeting with the members of our Irish family through a virtual Zoom meeting. The experience was truly eye-opening, and it highlighted the importance of face-to-face meetings and the significance of sharing experiences and best practices among the members of our community.

Compassion, Caring, and Sharing among Members  The Zoom meeting with our Irish members was an emotional experience that left a lasting impression on me. The level of compassion, caring, and sharing among the members of the group was truly heartwarming. It was clear that everyone in the group understood the challenges of living with trigeminal neuralgia, and there was a sense of camaraderie and support that only comes from being a part of a community that truly understands what you are going through.

The Importance of Face-to-Face Meetings  While virtual meetings are great for connecting with people from around the world, there is no substitute for meeting in person. The importance of face-to-face meetings was clearly highlighted during our virtual meeting with our Irish members. The members of the group expressed how meeting in person would be essential to ensure that there is the correct support and ability to work together to alleviate isolation and loneliness. It was clear that meeting in person would help the members of our community develop deeper connections, friendships, and a network of support, encouragement, and help. The Importance of Support for anyone with TN is vital.

The Humbling Offer of the Members. At the end of the Zoom meeting, I was incredibly humbled by the offer of the members to formulate their own support group and meet in person with someone taking the lead. This offer highlighted the strength of our community and the willingness of members to help and support each other. Despite the sadness of trigeminal neuralgia crossing the ages, occupations, and backgrounds of its members, together we stand stronger and closer by supporting and helping each other.

Empathy and Encouragement As one member of the group said, “It is people with TN that understand what we go through. Friends and family try, but they can never really understand the amount of pain that we have.” I can completely empathise with that statement, and I feel very encouraged by the strength and resilience of our community. I look forward to meeting the members in Ireland in person over the next few months. To continue to develop the friendships and network of support that are so important in helping us cope with the challenges of living with trigeminal neuralgia.

Meeting with our Irish members of the Trigeminal Neuralgia Association was a powerful reminder of the importance of face-to-face meetings and the value of a supportive community. The experience left me feeling inspired and encouraged, and I am grateful for the opportunity to be a part of such a compassionate and caring community. If you know of any venues that would be suitable for us to meet in person, please let us know so we can start to arrange face-to-face meetings and continue to develop the support and network of encouragement and help that our community provides. The importance of Support and friendship is an important part of our work at TNA-UK.

Message from Aneeta Prem CEO

Message from Aneeta Prem CEO

Message from Aneeta Prem CEO of The Trigeminal Neuralgia Association (TNA)  Facial Pain. TNA is a charity dedicated to providing education, support, and advocacy. Helping those living with trigeminal neuralgia and other facial pain conditions. TNA provides education and support to patients, healthcare professionals, and the general public, increasing awareness and understanding of the condition.

Research is a  priority for TNA. The chairs of the medical board Mr Sinan Barazi and Dr Giorgio Lambru with myself are focused on seeking solutions to help those living with the pain. Through these efforts, TNA hopes to make a real difference in the lives of those affected by this condition.

TNA provides education and support to patients.  healthcare professionals, and the general public, increasing awareness and understanding of the condition. TNA also advocates for the needs of people with trigeminal neuralgia and other facial pain conditions, working with policymakers and healthcare professionals to improve the quality of care and treatment options available to patients.

TNA and Facial pain Helpline. The helpline provides information and support to individuals with Trigeminal Neuralgia and Facial Pain. Volunteers, offer  support advice on how to manage symptoms and provide emotional support to those who need it

Meeting Face to Face. I am humbled to have had the opportunity to meet many of you face-to-face at the TNA National Conference in January and at Regional Support Meetings. I cannot express how vital it is for us to come together and share our experiences and burdens related to facial pain. Seeing the support we offer each other in times of need is heartwarming.

Tea for TNA. There are some exciting things to look forward to, and I urge you to consider hosting a Tea for TNA event to raise awareness and funds for our charity. The funds raised from these events will help us continue to operate and make more people aware of the support we provide. Last year’s Tea for TNA was a tremendous success, with events held in various settings. This includes homes, offices, schools, and even caravans. We encourage all regional support groups to have their own meetings.

Donating  By supporting TNA, you can help us in our mission to improve the lives of those affected by trigeminal neuralgia and other facial pain conditions. Together, we can make a real difference and provide hope for those living with this debilitating condition. So please, join us today and support TNA.

Message from Aneeta Prem CEO