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Adapted from an MS Trust Newsletter article May 2024 A new study has discovered the number of people living with multiple sclerosis in the UK has increased by nearly 13%.* The latest UK MS prevalence figure, which considers the number of people living with MS at any one time, is now estimated to be over 150,000. The previous figure, published by the MS Society in 2019, was 130,000. The sharp rise is thought to be due to a combination of factors, including better diagnosis and people with MS living longer, rather than an increase in the risk of developing MS. Further findings from the new data are listed below. All four UK nations have seen a rise in the number of people living with MS. There’s been a 15% increase in England, 10% in Scotland, 9% in Northern Ireland and 8% in Wales. More than 7,100 people are diagnosed with MS each year. Around 135 people are told they have MS every week. 71% of people with MS are women, meaning women are 2.5 times more likely than men to be diagnosed with MS. People are most likely to be diagnosed in their 30s and 40s. This latest data highlights the ongoing concerns of the MS Trust at the insufficient resourcing of NHS neurology and MS services across the country. The UK currently ranks 44 out of 45 European nations for the number of neurologists for each person with a neurological condition. Together with the MS Society, the MS Trust is calling for shortages in neurologists and MS nurses to be addressed by the Government. The MS Trust have been tackling the shortage of MS specialists for many years and are actively working to address the problem through the Specialist Nurse and Advanced MS Champion programmes.  These schemes part fund MS health professionals in areas of the country with the greatest need and are proven to save the NHS hundreds of thousands of pounds a year in emergency care. It is vital that NHS leaders and political parties recognise this escalating problem and develop MS services which meet the needs of the people living with this chronic condition. Lucy Taylor, MS Trust CEO, comment on the increase: “These new figures highlight a problem we already knew existed. There are simply not enough neurologists and MS specialists to support people living with multiple sclerosis. Every day, our helpline hears from people living with MS, struggling to get access to the care they need. This is just not acceptable. We fully support the MS Society in their call for the Government to urgently address the shortage of neurologists and MS specialists in the UK.” *Established using data from The Health Improvement Network (THIN) Database (a Cegedim Property Database). This work uses data provided by patients and collected by the NHS as part of their care and support. Here at The Brightwell, we whole heartedly support both the MS Trrust and MS Society in their campaign to have more Neurologists , MS Nurses and more general NHS Support. If anyone is struggling, the team at The Brightwell are always here to help.

Hi, my name is Dawn the Receptionist and Member Journey Officer here at The Brightwell. I live locally to the Centre having moved to Bradley Stoke in 1987, Bradley Stoke was mainly fields, with the plans for 8,000 new houses for a whole new town! Obviously I was very young then!  It wasn’t long before shops, pubs and other facilities were being built and within a few years Bradley Stoke started to feel like more of a community. I have a son and a daughter and have found Bradley Stoke a lovely area to bring them up in.  They are my pride and joy and give me so much pleasure and worry in equal measures but I wouldn’t be without them and am proud of the young adults they are turning into. They both attended Wheatfield Primary school, opposite the Centre, and I watched the then ‘MS Therapy Centre’ being built not knowing that I would end up working here. I was first introduced to the Centre when I was a Slimming World consultant.  One of my members, who had previously volunteered here, said that the Centre was looking for a receptionist and also needed some part-time cover.  She thought that this would be the ideal place for me.  I arranged to come in to help on reception and was asked to put in my CV which led to an interview and the rest is history.  I also used to hold my Slimming World classes at the Centre on a Saturday morning for quite a few years  and only finished Slimming World recently. The support the Centre gives people has always amazed me and it is a privilege to be a part of it.  Reception is the first point of contact, so it is important to make members feel welcome and supported.  Relationships are built and if existing members and new members are made to feel welcome and cared for then that’s very satisfying.  I hope in some small way that I help the members on their journey. Since I started working at The Brightwell, 7 years ago  I’ve seen the Centre change so much, it’s definitely much busier and the facilities have really grown, I work with some great people and glad to have made some great friends too. My role has been developed recently to include being the Member Journey Officer, which includes being involved with the members on a one to one basis to ensure that they  can access and make the most the therapies and support we offer. This is a completely new role and I’m really enjoying it. When I get the opportunity I enjoy going on holidays in the sun and weekends away watching live bands.  I am very excited to have just bought myself a converted Peugeot Partner and I’ve called her “Doris!” I must finish with an acknowledgment to our volunteers, as we couldn’t run without them.  I am so grateful for the help they give on reception so, thank you, thank you, thank you. I look forward to seeing you all next time you are in. Love and Best Wishes Dawn

Are you thinking of having a work meeting, a family gathering for a special lunch or a friends get together and want a super buffet? We can help! The Brightwell Café is delighted to offer sandwich platter buffets with the option of a selection of cakes, fruit, canned drinks, bottled water etc. at a very competitive price. We can cater for special dietary requirements such as providing Gluten free bread, with Vegetarian and Vegan options available too – just contact us with your requirements and we’ll be happy to help. Buffet orders will need to be pre-ordered at least 48 hours in advance and are available for collection on weekdays between 10am and 3pm. For further information or to book a buffet please call 01454 201686 and ask for Paula or Helen to discuss your requirements or email us at hello@thebrightwell.org.uk. Alternatively, just pop into the café at The Brightwell to discuss your needs and we’d be happy to help! For further information about The Brightwell Cafe please visit www.thebrightwell.org.uk/the-brightwell-cafe

As anyone with a disability or limited mobility will know, going out can be a challenge. I thought that it might be worthwhile giving you a quick review of my positive experience at the recently refurbished Bristol Beacon. I went to the Colston Hall a few years ago  with my husband and friends. Although we got to our seats via chair lifts to get into the auditorium, when the performance started,  It was not possible to sit next to my friends and although we had booked tickets at the front of a section, I was sat on my own, in my wheelchair,  in front of the others! However, my experience on 9 May in the evening was completely different and very enjoyable. I had registered on their Access Register a few months earlier, This was very easy to do and they only required a scan/photo of my most recent PIP confirmation letter. To register click below https://bristolbeacon.org/access-register/ The benefits are that the person going with you goes free. I paid the standard price of £48 for my ticket and nothing for Martin. You also get advanced email notification of any new events. On the evening itself, the main foyer is similar with plenty of lifts and accessible loos, big enough for electric wheelchairs. The major change was in the new auditorium which is amazing. We were in row S, Martin had a standard seat and there was a space next to him for my chair. Plenty of space behind and easy access to leave or to use the loo. The position was excellent. The row configuration meant that I could have gone with up to 3 people in standard seats, the seating plan shows the different accessible seating  locations bristolbeacon.org/plan-your-visit/seating-plans/ We went in via the back entrance. Although Level 1 has lots of parking in Trenchard Street NCP, there is a steep slope down to the pavement and I think some might struggle to push back up it.. Ideally get dropped off. We didn’t use them but there are places to get food and a fully accessible bar. I hope this helps. It’s nice to go out and feel   “normal”, we will definitely go again. Caz Blake-Symes

During the last year, The Brightwell has been honoured to have been chosen as one of the Mayor of Bradley Stoke’s chosen charities. Mayor Daley Lawrence has been incredibly supportive of The Brightwell’s work. Not only has he taken a genuine interest in support we give to those living with neurological conditions, but he has been very involved with our Charity.  Last June he even officially started  our Colour Run, held at Jubilee Green, by blasting off fire extinguishers full of colour! Throughout the year the Mayor has been involved in many fundraising events, including the ever-popular and spectacular Fireworks Display Evening in November. The Brightwell are delighted to share the proceeds of Mayor Daley Lawrences' tenure with Bristol Mammas and Prostrate Cancer UK. At the end of his tenure as Mayor, Head of Fundraising at The Brightwell, Victoria Hocquard, was invited along with representatives from the other beneficiaries to receive an amazing cheque for £1792.54. During the meeting the new Mayor of Bradley Stoke, Natalie Field, officially took over the reigns of this prestigious position.  The Brightwell is delighted to once again be chosen, along with Bristol Mamma’s as Mayor’s Charity for 2024-25. Thank you Daley, from all at the Brightwell, we know you will continue your great work as a Councillor, and we can’t wait to work closely with Natalie throughout this year. The Town Council have also agreed to host this year’s Colour Run at  the Jubilee Green fields  on Sunday 9 June. It promises to be another great community event!

Image courtesy of the AJ Bell Great Run website We are always overwhelmed by the tremendous effort that supporters put into raising funds for The Brightwell. This month we have so many dedicated supporters running for us, details are below, please donate on their various pages if you can. Great Bristol Run: 19 May Half Marathon and 10K Callum Blake-Symes and Charlotte Dilloway. This is Callum and Charlotte’s first official run. Callum is the son of one of our members and Trustees. They are also getting married in August! Callum and Charlotte Blake-Symes is fundraising for MS Therapy Centre at Bristol (justgiving.com) Stu Rutherford Stu is Millie’s Dad. Millie is a member of our Physiotherapy Team. Stu is a great supporter and fundraiser for The Brightwell and ran the London Landmark Half Marathon for us juyst a few weeks ago! https://www.justgiving.com/page/stu-rutherford-1710251949573 Dan Giuliani Dan is a relative of one of our members, Debbie Sutor. The nephew of Sarah Brewer, who has been a great help to the charity. So, Dan has lots of connections to our members and the work we do. The Brightwell Neurological Centre: Dan's page (enthuse.com) Tim Ransome Tim is doing the 10K.  Tim is the husband of Nicola Ransome one of our members. Thank you Tim for supporting us. timothy ransome is fundraising for MS Therapy Centre at Bristol (justgiving.com) If you are going to watch on 19 May on the route, please give our runners a big cheer! Keep an eye out for the yellow T-shirts and vests! and the Brightwell logo! Ibex Gale 100K challenge Some of the team at Ibex Gale have set themselves a challenge of running 100 k in May! We are exceptionally grateful that they picked us as one of their chosen charities. Brogan Miles has set up a JustGiving page to donate for the team’s achievement. Brogan Miles is fundraising for MS Therapy Centre at Bristol (justgiving.com) Thank you so much to everyone involved and we look forward to welcoming you in person to the Centre.

The Brightwell’s second Corporate Abseil Event took place on 10 May 2024, at The Village Hotel in Filton, a short distance from Bradbury House. The day was a massive success, in total over 60 brave participants abseiled down the 65 foot drop from the  top of the black iconic hotel building. The corporate teams were from Wain Homes, Regal Tile Ltd, Village Hotels, West Country Water Park, Waylands Volvo, Golf South West, TechEx Events and Bristol Pitbulls, not only did all these supporters overcome their fears but will also raise an anticipated £5,000 for our charity. As well as these corporate teams, a limited number of places were available for plucky individuals, the first solo abseiler was Barbs, one of our regular Cafe Volunteers. The day was organised by our hardworking Fundraising Team, Victoria, Lara and Clare. We were also delighted to have volunteers with us including new recruits Claire and Kirsten, who worked so hard in the heat and sold lots of raffle tickets and spread the word about all the great work that we do here at The Brightwell. Two of our Trustees Roger and Caz flew the flag meeting lots of guests and our longest serving Oxygen Operator, Keith Taylor was on photographic duties. The weather for the day was perfect with bright sunshine and a slight breeze. The actual drops and everything relating to the abseiling itself were managed by JT Expeditions who supplied all the equipment, training and safety procedures. The team at the Village Hotel were outstanding, not only allowing us to make use if their facilities, but also provided a constant supply of freshly prepared food and cold drinks for every one there. Steve, Manager of the Village Hotel worked so hard ensuring that everything went smoothly, getting lots of photos and making sure a good time was had by all! Thank you Steve! The Bristol Pitbulls not only had a team abseiling, but also had a good crowd of supporters with them. The Pitbulls’ fans added to the whole vibrant atmosphere by cheering and clapping for everyone but especially loud cheers for the Pitbulls. However, the prize for the best dressed team goes to TechEx Events  who were all dressed as Super Heroes, even with the high temperatures, they stayed in their costumes including two ladies in Superwoman costumes, a chap in a full Spiderman body suit, a Wolverine and a very glamourous Catwoman.  Well done to them all! A number of Village Gym members came to see what was going on and we were surprised to suddenly see our audience numbers swell by 40  people, who we found out were students on a day trip from Southampton University. 2 very enthusiastic young ladies, actually paid to take part and thoroughly enjoyed the experience! Over the coming weeks we will be adding photos to our Events page www.thebrightwell.org.uk/Events We were also very grateful to Wayne of Refresh Video Productions, who was taking professional photos of the day and even  had a drone taking footage of the event. Thank you to everyone involved these events, are only a success with the input from each and every person involved. Our next big event will be our Colour Run on Sunday 9 June www.thebrightwell.org.uk/events/the-brightwell-colour-run-2024 Check out this video- it looks really scary from above! Thank you to everyone involved these events, are only a success with the input from each and every person involved. Our next big event will be our Colour Run on Sunday 9 June www.thebrightwell.org.uk/events/the-brightwell-colour-run-2024

At our AGM on 25 April 2024 there were a number of presentations. For those who could not attend, we thought you might be interested to see some of the facts and figures presented by our CEO, Doro Passantes. Membership Numbers: West of England MS Therapy Centre Jan 2023 198 subscription renewals. Picked up an average of 9 new members per month after that. Total 299 + 14 lifelong members + 29 Centre Friends = 342 individuals In 2024 we are on track to raising our member numbers, we are already on 252 members, and we are only 4 months into the year. Bristol Therapy Centre 73 existing subscribers through the trading company in Jan 23 Picked up an average of 7 new subscribers per month. = 146 Member Breakdown by Gender and Age 61% of all Centre Users were women. Through the Charity WOEMSTC more of our members are 60 + followed by 40 -60 yr olds. Through the BTC, the main age group for males is 18 - 40 yrs of age and for females 40 -60. Our Reach The picture is very similar to our reach in 2022. The two main areas Service Users come from are Bristol and South Glos. All other numbers have followed last year’s trend and the percentage breakdown is remarkably similar to 2022. Interestingly further afield include 14 people, 7 from Wiltshire ,4 from Devon, 2 from London and 1 from Cheshire Conditions people have Across the Centre people with MS make up 34% of all service users. Next largest group are those with other neurological conditions, which includes Stroke Survivors, people with fibromyalgia / Parkinson’s / FND /Brain Injury amongst others. They make up 28% of all Service Users. 18% of people who attend the Centre have Long Covid. Symptoms can be neurological: fatigue/brain fog. Out of those who attend the Centre and are living with or have survived Cancer – the largest numbers are those with Breast and Prostate Cancer. Oxygen Department Out of the 281 people who had oxygen in 2023, 108 were new to the therapy. 26% are people with MS. In 2019 people with MS made up 45% of those attending for oxygen. In 2023 there was a big surge in those coming to us with Long Covid which amounted to as many people having oxygen with Long Covid as those with MS. There was also an Increase in those attending with Musculo skeletal issues inc. broken bones and soft tissue injury. Physio Department In Physio people with MS still account for 41% of all those supported in the department. Overall neurological conditions account for over 80% of all those who attend the physio gym either for a 1-2-1 or group session. Therapy Numbers It has taken us to up to 2023 to get back to the pre-pandemic numbers in 2019 and in fact both in oxygen and in physio we have delivered more sessions to more people. We increased our Isobaric Oxygen station to 3 places, one more than in 2022. We expect these numbers to build in 2024. Physiotherapy 1-2-1 sessions were up despite staffing challenges in the department. We also set up our own Functional Electrical Stimulation (FES) Clinic. New Exercise classes for groups like Paul’s Place and building relationships with other organisations like Rugged Interactive, who provided the Cardio Wall (we want to do more of this over 2024) Complementary Therapies: Room for growth.  Foot Health / Acupuncture numbers are currently low. Clinics: still not back up to pre-pandemic levels these include the Bladder & Bowel Wellbeing clinic, Citizen s Advice which is delivered in partnership with the MS Society and the Botox for Rehabilitation Clinic. Sept 23 saw the re-introduction of counselling with Sasha. This service has received very positive feedback from members. These figures give us an insight into how the Centre is performing as well as a comparison with previous years. Which in turn helps us to focus on the future direction of the Brightwell. We hope you have enjoyed looking at these figures and that they have given you a greater understanding about the numbers involved regarding members, their conditions and the therapies received.

We were delighted that Sasha Leigh, our Specialist Counsellor, opened up The Brightwell’s AGM on 25 April 2024 with a fascinating presentation. Sasha is a qualified Integrative Counsellor and Psychotherapist and registered member of the British Association for Counselling and Psychotherapy. She works to build open and trusting therapeutic relationships and will take time to listen, explore and understand the world from your point of view and at your own pace. You can talk about anything that’s troubling you, confidentially and without judgment, including things you may not have felt able to share with anyone else. During her presentation, Sasha explained about the Research she is undertaking. Below are some of the slides from the presentation which we hope you will find of interest. Sasha holds sessions at The Brightwell in person, online or over the phone. Contact can be made via Reception. Further information about Sasha and the other Specialist Clinics we offer can be found at www.thebrightwell.org.uk/therapies/specialist-clinics

My name is Keith Taylor. I am 83 years old and very proud to have been the Senior Oxygen Operator and now support Angela Ball in that role, here at The Brightwell. My involvement with the Charity goes back over 40 years to the early 1980s. My beloved wife Pat was diagnosed with MS in 1973, and at that time there was no provision or treatment on the NHS for MS. After diagnosis, people were sent home and expected to just get on with living with this cruel condition! We both decided that this was wholly unacceptable and to look for our own forms of therapy. We both looked at things from a “scientific” perspective, I had studied at first Biology and later, Chemistry and was managing the Sewage Treatment Works based in the Yeo Valley and Pat was the Lead Pharmacist at the Bristol Homeopathic Hospital. We read about the successful use of Oxygen Therapy and in 1983, Pat began to go to Exeter to use the tank there, this was quite difficult to do juggling family, work, and travel. At the time, Oxygen Therapy was the only positive response to helping with MS that we could find, and the physiology made sense to both of us. I looked at the possibility of setting up our own unit in the garage but soon realised that the proposed set up would not be suitable. Shortly after that I was introduced to a lady called Jackie Brightwell who was looking at setting up a chamber for those living with MS, including her husband, in the Bristol area. Jackie was part of a group called Action and Research for MS (ARMS), a breakaway group from the MS Society. So, with the commitment of a dedicated local group, money was raised to find premises in Nailsea near Bristol and purchase a chamber and its associated equipment from a company called Diveline in Ipswich – that “tank” is the one we are still using today at the Bradley Stoke Centre! The Centre was originally called the "Bristol Branch of ARMS" but when ARMS went into liquidation, we became a charity on our own, The West of England MS Therapy Centre. The Charity formed at that time is still supporting those living with MS and other neurological conditions today. Over the years that followed my passion to help those living with MS continued and we were able to introduce Physiotherapy and other therapies. I was for a long time a member of the Centre Management Committee and It became apparent that the Centre had outgrown the Nailsea site. A team of like-minded people, including Doro Pasantes, our CEO, Jackie, and our Chair at that time Peter Miller set up The Moonstone Trust with investors to raise over £1 million to build our current facility on land leased to us by South Gloucestershire Council. Sadly, Pat passed away in 2010, so didn’t see the new Centre open but she would have been100% behind the project to achieve our goal and the Centre we are now all so proud of is the result. I was so delighted that the Centre was renamed The Brightwell a few years ago. Jackie remained an active Trustee and supporter until she was well in her 80s and an inspiration to all of us. Although Jackie is no longer with us, her legacy lives on through every person who benefits from being in that tank. I live in Yatton, in the same house since 1971, and love my community. Pat and I raised our two boys here and I am now the proud Grandad to four wonderful grandchildren, all of whom are relatively local to me. I have, until recently, been an active member of our local Chapel and Rotary and hope that I am a supportive friend and neighbour in our local community of Yatton and beyond. I feel truly privileged that over the years, I have worked with, and helped train, numerous Volunteers. whose level of commitment and passion is quite overwhelming. I have been a Regional Training Advisor, now called Oxygen National Advisor, working with other Centres. Recently I have been involved with others in the setting up of the standards and training programmes for the Neuro Therapy Network, formerly known as the MS National Therapy Centres. These programmes offer standards, operational guidelines, and new training modules for about 50 Centres across the UK, Gibraltar, and Jersey.  How things have moved forwards over the years! I am still passionate today about Hyperbaric Oxygen Therapy (HBOT) and the great work carried out at The Brightwell. I am always pleased to see members, new and old, benefitting from their experiences at The Brightwell and in Oxygen Therapy and hope that they enjoy becoming part of the Brightwell family because it is such a positive and rewarding place. Personally, I cannot begin to say how much being involved with The West of England MS Therapy Centre has meant to me over the years.  I have made so many genuine friends and met so many inspirational people who have become part of my life for which, I am deeply grateful. I look forward to every time I am “on duty “and miss being there when I’ve been unwell or unable to attend. Please come and say hello if you see me at the Centre and I’m always available for any questions about the treatment or volunteer training. Best Wishes to everyone. Keith

Take a look at our April 2024 Newsletter!

Photo source: Sportograf.com We are incredibly grateful to Madeleine Wade for  representing us at this year’s  London Marathon. This year’s event was a record-breaker with over 50,000 people taking part. Competitors ranged from Elite International Athletes to one man carrying a fridge and one lady dressed in a full Rhino costume! Every year Charities can apply for places, this time we were lucky enough to be eligible for a place via a nomination through the Neuro Therapy Network. Madeleine approached us and she was our chosen runner. As Madeleine says on her Just Giving page “in a moment of madness I decided to enter the London Marathon!” Although she enjoys keeping fit and taking on a challenge, until recently she has not been a runner. Madeleine rows competitively for Portishead Pilot Gig Club, however, she has never run a marathon and the last half marathon she ran was over 10 years ago! She was introduced to The Brightwell through Doro Pasantes, our CEO, who is also a PPGC rower. She admitted to Doro that the training was much tougher than she had expected due to injury. All the way through her rigorous training schedule she was supported by her daughter Annabelle and son Will, who as you can see in the photo above ran with her on the day. Madeleine commented “It was such a wonderful event to be part of. The noise and encouragement from the crowds is incredible. For me personally, it was such a sense of achievement to finish the race and to have my two children with me made it a day never to forget” As well as this incredible personal achievement Madeleine has raised an impressive £2,000 for us here at The Brightwell. If you would like to show your appreciation, by supporting her, please click the link below. https://www.justgiving.com/page/madeleine-wade-1702680019408