Rebecca Jobson’s Post

What does the next government need to deliver for people living with migraine? The Neurological Alliance are working with charities across the UK to develop a campaign calling on the next UK Government to back the 1 in 6 of the population who live with a neurological condition. They want to hear your thoughts on what is working well and what the next government needs to deliver for people affected by neurological conditions. Please take part in this research and share your thoughts and daily realities, so we can transform the lives of millions affected by neurological conditions. https://lnkd.in/eyqPESHa

Got some thoughts on what the next government should be concentrating on, then fill this survey out

World ME day. BACME is a group of professionals and people living with ME/CFS (and the cross over of both) dedicated to improving care in this field and marks this day acknowledging there is much to do to to improve the quality of care for the millions around the world that live with this debilitating condition. As an organisation that supports clinicians working in this field BACME’s charitable objective is: The relief of sickness for the public benefit by: -Championing clinically effective practice in treating ME/CFS and other primary fatigue conditions -Disseminating of recent evidence and practice to clinical practitioners -Providing education and training for members respecting up-to-date evidence and best shared practice -Advocating for equity of access and excellence in the provision of services -Facilitating networking amongst clinicians, researchers and patients -Advocating for and promoting relevant research and to publish all useful results arising from any research supported. #ME/CFS #globalvoiceforME #compassion #specialists #volunteers https://lnkd.in/eDT7xw3j

Answer me this. If therapy can be accessed through your workplace, school, church, council, refuges, charitable organisations and privately... Why isn't this common knowledge? Am I dense? Because some of these are news to me! and I certainly wasn't made aware of these avenues when I was looking for therapy as a young adult. I was prescribed medication not offered therapy. So are they not publicized to drive people through the medical system? Is it that the therapy is technically "available" through these avenues but capacity is low, so they keep it on the down low? Are there strict eligibility criteria you need to get this therapy? Or is this just a simple case of being told one thing but the reality is very different? Is this "tick-boxing" at its finest? #mentalhealthawareness #therapy #therapists

📢 UK Members: Your Voice Matters! 📢 We know many of our members deal with ongoing neurological symptoms despite B12 therapy. To improve care and support, we need your input! The Neurological Alliance (England) is conducting a crucial survey to better understand the experiences of people with neurological conditions across the UK and Republic of Ireland. Your feedback will shape future advocacy and service improvements. 📝 Survey Details: Adults’ Survey: For those 18+ with a neurological condition Young People & Children’s Survey: For those under 18 with a neurological condition Carers’ Survey: For those who support someone with a neurological condition Why participate? Your insights can drive significant changes in care and support for all affected by neurological conditions. 🗓️ The survey is open until 15 November 2024. It takes just 15-20 minutes to complete. 🔗 Take the Survey Here - https://bit.ly/3MxQvG3 Remember to select Pernicious Anaemia as your condition so that we can collate the relevant data. Together, we can make a difference. Let’s ensure our voices are heard! 💬💙 Support our charity by becoming a member or donating, and follow our page for more insights and useful information about PA! #PAS #PerniciousAnaemia   #B12deficiency #vitaminB12 #HealthAwareness #LifewithPA #PASociety #PAS12

Over 1,600 people across organisations and sectors were involved in the Birkbeck and Neurodiversity in Business (NiB) - the Neurodiversity Charity's research, which has been collated into a report that makes clear recommendations for practice and policy to put more focus on wellbeing support which is neurodiversity sensitive. With 15-20% of the UK adult population being diagnosed as #neurodivergent, organisations must expect a diverse workforce and offer a holistic approach that thinks beyond condition-specific initiatives. https://ow.ly/uuBI50TCkJZ #neurodiversity

As a charity that supports and educates clinicians who specialise in caring for people with ME/CFS, BACME  members are most distressed to read the reports from Maeve Boothby O’Neill’s inquest. Our hearts go out to her family and friends and our compassion to all those who were involved in her care. ME/CFS is a complex multi system condition. BACME members will continue to advocate for better care for all people living with ME/CFS and to educate professionals working in and outside of specialist services. All people living with ME/CFS, particularly those who are severely affected, require expert and individualised treatment and care from a co-ordinated multi- disciplinary team with cross speciality working specific to each person's situation, symptoms and health status. We are continuing to learn from patients, carers, fellow professionals and researchers, to share expertise where possible, to consult with colleagues to optimise treatment and care where we can, and to advocate for appropriate resources. There is much to do, and our hope is that the understanding of ME/CFS will grow, more professionals will be better educated about this condition, research will bring answers to some of the many questions, and that people living with ME/CFS will receive the best available care to reduce symptoms and improve quality of life. 

We Are Undefeatable launched a public consultation in 2023 to understand what is most needed to support people living with long-term health conditions to get active. They gathered input from over 2,000 people including those living with health conditions, their carers, friends and families, and those with a professional interest in this area. They recently published a report detailing their findings. Key themes include: - Why the NHS is only a starting point for people with health conditions to become more active. - How the ‘empathy gap’ may be hindering support for people with health conditions. - The pivotal role that health charities can and must play in supporting physical activity. Link to the full report in the comments below.

Why is it important that we support one another as a charity and a community? Many of us have waited too long for a #Glut1DS diagnosis missing out on valuable treatment time, services and support. Glut1 Deficiency UK is aiming to raise awareness of Glut1DS with our healthcare organisations and professionals, by putting the key symptoms on their radar at the medical conferences we attend. We want to thank our supporters who help fund our attendance to these conferences and raise awareness of Glut1DS. We have several important events happening in 2024 where we aim to represent each and every individual with a Glut1 diagnosis in the hope of shortening the diagnostic time, which will enable our families to receive the treatment, services and support they are waiting for. How long did you wait for a diagnosis? With your help we hope to shorten that time. #TogetherforGlut1

Bridging the gap: understanding how to support people with long term health conditions become more physically active - article from Versus Arthritis #WeAreUndefeatable https://lnkd.in/e8GXDgwr #arthritis #arthritisawareness #VersusArthritis #consultation #charity #notforprofit