official Tbpi Uk twitter

Joined August 2024
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Jan 27
The third Community Day is being held on Saturday 18th April 2026, This time it will be at QE Hospital, Birmingham. It's free to attend and food is included too. There'll be workshops, stalls and presentations. The first two were held in London and were both successful. Hopefully this one can be even better. If you are interested check out the links below.
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I've received the following from Stuart Baldock, founder of AdaptAbility Solutions Ltd.  Hi Neil, Firstly, thank you for taking the time to explore AdaptAbility yourself and for offering to share it with the TBPI-UK community and your wider contacts. As promised, I've attached a short information sheet and a draft post that you are welcome to use, adapt, or share in whatever way works best for the group. AdaptAbility has grown out of my own experience of living with a brachial plexus injury following a motorcycle accident in 1999. Over the years I've become increasingly interested in the difference between a diagnosis and the practical reality of everyday capability – the things people are trying to do, the barriers they encounter, and the adaptations they develop along the way. The platform isn't designed to diagnose, assess, or replace professional advice. Instead, it's intended to help people explore their own experiences and generate a structured summary that may help them better understand what is working well, what is difficult, and where adaptations may already exist. Following recent feedback, I've also completed a number of improvements to the onboarding experience to make it clearer for people exploring everyday life, hobbies, independence, fatigue, driving, sleep, and other personal situations outside of a workplace setting. At this stage I'm looking for approximately 20 volunteers who would be willing to try the platform and provide honest feedback through the short feedback form at the end of the exploration. Positive feedback is always nice to receive, but constructive criticism is equally valuable. The aim is to learn from real users and continue improving the experience. Thank you again for your support. It genuinely means a lot to have the opportunity to share the project with a community that understands adaptation through lived experience. Kind regards, Stuart Baldock Founder AdaptAbility Solutions Ltd ADAPTABILITY™ COMMUNITY PILOT What is AdaptAbility? AdaptAbility is a capability exploration platform designed to help people explore everyday activities, routines, hobbies, work, independence, fatigue, and life adaptations. It is not: • A medical assessment • A diagnosis • A fitness-for-work assessment • A test with right or wrong answers Instead, it provides a guided exploration focused on: "What are you trying to do, and what is getting in the way?" Who might find it useful? People living with: • Brachial Plexus Injuries • Limb differences • Chronic pain • Fatigue-related challenges • Neurological conditions • Long-term health conditions • Life-changing injuries or adaptations What happens? • Choose a pathway relevant to you • Explore a topic through guided conversation • Respond using options, free text, or a mix of both • Receive a personalised Capability Summary What am I looking for? Honest feedback. I am currently inviting approximately 20 volunteers to help test the platform and provide feedback on: • Ease of use • Clarity • Relevance • Usefulness • Overall experience How long does it take? Most explorations take between 10 and 30 minutes depending on the topic and depth of discussion. Privacy AdaptAbility is designed as a private, user-controlled exploration experience. The platform does not provide medical advice, diagnoses, or treatment recommendations.   If you would like to participate, please send Stuart an email expressing your interest. (adaptability.support@gmail.com) Pilot participants will then receive: • Access instructions • Pilot information • Exploration access code • Feedback form details Thank you for helping shape a community-led project built from lived experience. Stuart Baldock Founder – AdaptAbility Solutions Ltd #tbpi
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Tbpiuk retweeted
Jan 27
The third Community Day is being held on Saturday 18th April 2026, This time it will be at QE Hospital, Birmingham. It's free to attend and food is included too. There'll be workshops, stalls and presentations. The first two were held in London and were both successful. Hopefully this one can be even better. If you are interested check out the links below.
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Mar 29
Thank you very much to those who were able to make it to the March NIRA meeting. It was great to see you all and hear what you think could be done to improve recovery and regain of function following nerve injury. March Meeting Summary The NIRA March meeting focused on the topic of recovery and regain of function following nerve injury. The questions below capture the highlights of the discussion among the 14 attendees on what research could be done to improve recovery and functional outcomes: •How can stem cells and cell-based therapies be made more widely available in nerve injury treatment? •How long post‑injury can recovery still occur? •Could improving neuropathic pain management improve engagement with physiotherapy and therefore recovery? •What can be done to increase the speed of regeneration? •How can muscle function be preserved in the window between surgery and physiotherapy? In addition to these questions, the group highlighted the value of a longitudinal study examining physiotherapy options following nerve injury, particularly to understand how rehabilitation regimes should evolve over the years and decades post‑injury to minimise long‑term impact and maximise recovery.  If there are any other ideas/comments this summary sparks contact this online message board: app.sli.do/event/uewr6a9zyyG…  Next meeting is Thursday 23 April at 6pm

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Mar 29
Arising from the recently formed NIRA this is a new group set up be Conor Todd whereby BPI's can get together online for an informal chat about anything and everything nerve injury related. Conor's message to you all is below; 'Nerve Connections is a welcoming, informal space for those living with nerve injury, and their loved ones, to come together over a cuppa and get to know one another.  I plan to host this meeting on the 1st Thursday of every month from 18:00 to 18:40. I currently have a standard zoom account so will be limited to 40 minute meetings but I can start another meeting if we want to talk for longer.  The first meeting will be on Thursday 2nd April, Details for the Zoom meeting are below: us04web.zoom.us/j/7766863579… ... EV6sIKGf.1 Meeting ID: 776 6863 5791 Passcode: 527194 I will send out a reminder with the meeting info on Wednesday.'
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Mar 13
In next week's NIRA meeting, we will focus on what research you think could be done to support recovery and regain of function following a nerve injury.  Please share any questions/comments you have around this topic using the link below: app.sli.do/event/nE7t2BCaHSj… To make sure it is the voice of those with lived experience and their loved ones that is the loudest, we ask that researchers and clinicians without a nerve injury refrain from suggesting research questions at this early stage.  Our March meeting will be on Thursday 19th March 6 pm - 7.30 pm. The joining details are below - these will be circulated again the day before in the reminder email. ucl.zoom.us/j/93320545221?pw… ... Bu0GMOOj.1  Meeting ID: 933 2054 5221 Passcode: 068746   If you have any questions or suggestions on how to improve NIRA, please send us an email and let us know. We are keen to make sure NIRA evolves into a group that works for all its members.    Thank you all very much for your support.  Looking forward to meeting next week. Best wishes,  Mel, Neil, Conor & Poppy The Nerve Injury Research Alliance Team

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Jan 27
NIRA update We had a very successful opening meeting last Thursday and the next one will be at 6pm on Thursday 19th February where we will be discussing the areas you would like future research into the injury be directed. Register via the link below if you'd like to be a part of it. docs.google.com/forms/d/e/1F…
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12 Dec 2025
A short introductory video to NIRA. Our first online meeting is on 22nd January at 6pm. Hopefully see you there!
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Tbpiuk retweeted
20 Oct 2025
Patient engagement in research is so important- the correct focus is given to the scientists engineers and doctors and allied health professionals can improve patients’ lives. This aim is getting NIRA with this new initiative- sign up below! @tbpiuk @erbspalsygroup @Erbspalsyirl
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20 Nov 2025
We’re launching the Nerve Injury Research Alliance (NIRA) – a new group to talk about what challenges have the biggest impact on living with nerve injury and what research needs to be done to help. Our goal is simple: to make sure nerve injury research focuses on what really matters to those affected. NIRA is a space for ongoing conversation where personal experience and scientific expertise come together to guide research towards a better quality of life. Meetings will be held monthly over Zoom. If you’re interested in being part of this and shaping the research of tomorrow, please sign up here: forms.gle/d4TywVFD76pjinse7 We’d love to have you involved. Best wishes, Neil, Conor, Mel & Poppy The Nerve Injury Research Alliance Team
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14 Jun 2025
Announcing the 2025 annual meeting and social gathering of the TBPI Group, also known as ‘The Bungarm Bash’ in remembrance of Liz. This years dates are August 1st to August 3rd with the AGM at 2pm on Saturday 2nd August. We are very happy to announce that he next annual meeting and social gathering of the TBPI Group will be held at the same place as last year; Squires café and bar, Newthorpe, near Sherburn-in-Elmet, West Yorkshire. The place is very easy to find and is situated in some very pretty countryside. The meeting will be held from around mid-afternoon Friday 1st August right through to Sunday morning 3rd August to allow for as many people as possible to attend. The main event starts at 2.00 Saturday 2nd August in our own marquee, set up behind the cafe. We have recently extended the marquee by an extra eight square meters and we have also installed some overhead fans to dissipate the heat that our AGM always attracts! There will be guest speakers from Birmingham QE and Leeds General hospitals and our very own Royal Enfield 350cc motorcycle with adaptions for both right and left hand controls will be available for demonstration along with Phill’s adapted cycles. This year we are pleased to have with us a representative from Rebotics who will be demonstrating their MyoPro prosthetic. See it in advance here. The venue is a very large café-bar, situated just off the A1 at the Sherburn in Elmet exit J.42 – from the South go left, from the North go right onto the A63 Leeds – Selby road. Take the B1222 slip road and Squires is a short distance on the right. The nearest international airport is Leeds Bradford, nearest train station is probably South Milford though Sherburn-in Elmet is on the direct line from York and therefore more conveniant for most people. (A short drive from Squires and anyone arriving there will be picked up by one of us – just let us know in advance and we’ll meet you there) It is set in five acres of land with plenty of room for camping. There is a shower and toilet block for the use of anyone who wants to camp. There are a number of Hotels and B&B’s nearby for those that don’t. The post code for Squires is LS25 5LX and their website is here. Children are welcome at Squires, and there is a separate room there with several arcade games, and plenty of space outside to run around. The grassy area for camping is away from the car park, so it’s pretty safe. Food is available all day at very reasonable prices, including a huge breakfast, other hot meals and sandwiches, cakes, tea coffee etc and the bar is open at the usual times. Everyone who attends the AGM on the Saturday afternoon will be given food vouchers that can be used to purchase from the excellent menu at Squires. We have used this system for the last few years, replacing the buffet that used to be prepared in previous years, and it was generally thought to be a better way of providing food so we’re sticking with it once again this year. We want to stress that this meeting, like the previous ones will remain essentially informal in nature, mainly because of the venue. We, as a registered Charity, have to have an AGM and the Squires meeting is ideal for this. Everyone present will be entitled to vote for committee members and also ask questions, make suggestions, talk about anything that affects the group and the way it is run. The atmosphere at Squires is very relaxed, and there will be other people there who are not part of the group, but regular customers. Don’t be put off by this though as it has never been a problem in the past, and we’ve even been able to squeeze a few donations from them! Speakers doing short talks and presentations on certain subjects will be about as formal as it will get. As ever if anyone has any ideas or suggestions for the ‘bash’ please express them through the messageboards and we will do our best to incorporate them into the weekend. All of the other annual TBPI Group meetings have been held at Squires, mostly on the same weekend, and they have been a great success. Every year, the number of new people attending goes up, with many taking advantage of the very large campsite. The feedback that the TBPI Group Committee received from the people who attended the previous meetings was all positive we’re relieved to say! We believe that this annual ‘do’ is very worthwhile, and we intend to repeat it every year as long as we are able. We sincerely hope you will be able to join us! Please let any of the committee members know by email (in the ‘Contacts’ section) or via the message boards if you have any special requirements or questions about the weekend.
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26 Apr 2025
Hey everyone this years AGM at squires will be on Saturday the 2nd August at 2pm. As always the committee will be on site from Friday 1st until Sunday 3rd for anyone who would like to come for the weekend. The best western is open this year that about 5 minutes away from squires. Camping on site is free for those attending the AGM, more details will follow.
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21 Feb 2025
I'm sure many of you will be familiar with @TJQPNI excellent work at RNOH Stanmore where he has been operating on BPI patients for many years. Tom has now moved to Bristol where he is spearheading a new BPI Unit and has asked for some feedback from people in or around the area who may have previously been forced to go further afield seeking treatment. He would like to hear from people in the Bristol and general South West area who have had to travel from there and would like to comment on their experience. Also what sort of things would people from there like to see in a new unit in the area. You can post below and I'll make sure Tom sees your feedback. Thanks Neil.
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31 Aug 2024
Pictures form our 2024 Agm #brachialplexus
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