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We are delighted to welcome two new members of staff to the Brightwell. Monique  Woodman joins us on our Reception team and replaces Shelley who left us last month for a new adventure in Wales. Monique will be working closely with Dawn and our Reception Volunteers. Surabhi Miah joins our fundraising team in a new role as Events, Corporate and Partnerships Officer. Surabhi joins us with a wealth of experience. We are very much looking forward to her joining Victoria, Lara and Clare in the fundraising team. Both ladies live locally and are familiar with the Bradley Stoke Community. Welcome to The Brightwell!

Thoughts by Caz Blake-Symes, Member and Trustee As anyone living with MS or any neurological condition will know, there is no “rule book” to tell you what will happen, if, when or how. For a start, not all of us will have every potential symptom, some may have lots of the symptoms mildly and others just one or two symptoms severely. To say that living with a chronic neurological condition like MS is unpredictable is an understatement, to say the least! Many of us have obvious symptoms which others can try to understand, for example, if you use a rollator, a wheelchair or walking frame, people can see the disability. If the person with MS has slurred speech, friends and family get used to it. However, others, for example shop assistants, waiters and taxi drivers may not try to understand, and I know some have even been accused of being drunk! All to often it is the so-called hidden symptoms that are the most difficult to deal with. At the top of this list of undesired symptoms to live with come bladder and bowel issues. Living with the dread of leaving the house without being padded up and dehydrated and still having an accident is thankfully a situation that most “normal” people don’t have to worry about, so the comprehension around these issues is less. If this is a concern, this can potentially rule your life. Incontinence is just one example, fatigue, anxiety, fear of the unknown and lack of independence are also common “non-visible” symptoms. Being part of the Brightwell Community can elevate many of these fears and in many cases the actual symptoms. Let’s look first at the practical and physical aspects. The whole building is fully accessible, with three accessible w.c. facilities. Each loo area is large and well-equipped, including hoists, and one has a full shower area.  How many times have you gone to a so-called accessible loo to find you can’t get in, especially in a larger electric wheelchair! I recently went to a local 4-star hotel/restaurant, having been told that it was fully accessible. When I got there, the accessible entrance was through a closed fire door and the accessible bathroom was being used as a storage room! The staff had to move two metal beer kegs for me to get to the loo! Needless to say, after a strongly worded complaint, it has now been sorted. I’m sure others have similar stories to tell! Once safely in the Centre, the therapies on offer can help with both physical and mental health needs. Over and above the key therapies of Hyperbaric Oxygen Therapy and Neurophysiotherapy, there are also a number of specialist therapies and clinics including, counselling, massage, reflexology, foot care, acupuncture, Citizen’s Advice and Bladder & Bowel support. The greatest asset The Brightwell has; is its people. On a personal level, I feel completely comfortable talking to any of the staff, volunteers, and other Centre Members. As we are all in the same boat, there is a level of understanding and compassion found across the Brightwell Community, that is rarely found elsewhere. I know from my point of view; I don’t want friends and family to feel sorry for me, nor treat me like I’m ill. At the Centre, I can be completely open and honest about living with my MS and the resulting issues. Here is a great example of how I was recently helped and supported by other Centre Members. After seeing my neurologist in January, she suggested the possibility of me having a suprapubic catheter (SPC). I have been fortunate to have had three previous bladder Botox procedures quite successfully. However, despite this treatment, this still meant I needed to plan my days well in advance, and I was too often dehydrated. I had a very frank supportive chat with two friends at the Centre, both have SPCs. These conversations would not have been possible in any other circumstances. The fact that we all share similar issues, and the Centre lends itself to that sort of conversation, was a major benefit to me. As it happens, I had further Botox and medication but when the time comes for an SPC, I will be confident, knowing the facts, possible issues and more importantly the benefits, after learning so much valuable information. This is much better than being given a leaflet! So, if you are feeling alone, concerned, anxious or have any worries whatsoever, the Brightwell Community is here for you. If you need to talk to a therapist, a fully qualified oxygen operator, someone who can signpost you for financial or legal support, there will be someone to assist. Likewise, if you, or your partner or carer would just like to have a good chat with some who understands and cares – the Brightwell is the place! As a bonus you can now get a great cuppa at the same time! See you at the Centre soon. Caz

On Sunday 9 June The Brightwell held its Colour Run for the second consecutive year at the Jubilee Green fields in Bradley Stoke. It was another great success with hundreds of families and supporters taking part! This Colour Run was one of the final events of  the Bradley Stoke Festival weekend. The race covered an approximate 3km course and the competitors were not only showered with colored powder paint during the run, but were each supplied with their own powder paint to throw, making the whole event a multicolored spectacle! So much hard work goes into organising such events and we would like to thank our fantastic fundraising team for ensuring that everything was so enjoyable. There was lots of music and entertainment thanks to Andy Heath on the PA system, providing sound and commentary from his vantage point on stage above the main field. The race started with a warm up by Anytime Fitness and then the two heats were officially started by Bradley Stoke’s newly appointed Mayor, Natalie Field. The success of these fundraising events is thanks to the support and dedication of so many people. We would like to thank our key sponsor for the day, Woodstock Homes, the supporters of the colour stations the Willow Brook Centre, West Country Water Park and Brightwell’s own team, comprising  of staff and volunteers. The cost of the eye protective sunglasses was paid for by Explore Learning. This year, each competitor was also awarded with a lovely shiny medal sponsored by Newgate Construction. The first aid cover provided by Bristol Ambulance Services was sponsored by Bristol and Weston Mortgages Online. Of course, our gratitude also goes to the Bradley Stoke Town Council for letting us run the event, and to their members of staff who helped out on the day. We have some fantastic photos and drone footage from the day, with many thanks to Guy St Ledger, Simon Green and Keith Taylor. As with everything we do here at The Brightwell, it’s always a Brightwell Community team effort.  Last Sunday’s event was a perfect example of this, as we were supported by Brightwell staff and their families, Brightwell volunteers, local running club volunteers (who did a brilliant job marshalling the course) as well as representatives from the Lion’s Rotary Club, who helped us organise the raffle. Thanks to everyone involved, especially Lara who was the principal event organiser, and who had her whole family helping out - thank you Carnell family members! Not only was this an amazing community event but an fantastic £4,400 was raised for The Brightwell! If you would like to keep in touch with everything we do here at The Brightwell, sign up to our blog, please visit www.thebrightwell.org.uk/blog  you can also follow us on social media via the links on our website www.thebrightwell.org.uk.

Hello, my name is Steve Cocks and just over 12 years ago the then Chairman Ken Edis of the Centre asked me if I could spare a few hours to help a Charity. That Charity was The West of England MS Therapy Centre. I had worked with Ken in a Bristol based software company specialising in corporate pensions and by coincidence our wives had both been diagnosed with MS. My early life was based in Cornwall and I was educated at Launceston College in the historical market town of Launceston. I left the college with a couple of A levels with no clear idea on the future and at the same time my parents decided to move to Plymouth to start a retail business. In Plymouth I started working at a Power Station on the administration side. I had also been offered a post within Barclays Bank, which I declined as there offer was £620 per year and the energy company offer was £60 a year more. Probably something to do with my Cornish heritage, as I am sure you all know that the definition of a Cornishman is a Scot with his pockets sewn up! In October of 1971 I met a young lady called Mary. We were engaged quite quickly and married in 1974, so yes it will be 50 years this August and we will be celebrating our Golden Wedding Anniversary. My career development required mobility and posts were taken in Bristol in 1976 and Guildford in 1981 and my skill set had moved to pension scheme administration. In 1985 I was head hunted to work for Edis International, back in Bristol,  who had just won a contract to computerise the administration of the Electricity Supply Pension Scheme. I was therefore a key resource in defining and testing the application for the then 29 administration centres in the UK. I joined the Board of Edis International in 1989 and spent the majority of the next 10 years in business development. When in Guildford Mary had taken a post in London and was commuting, which she quickly became tired of and therefore we decided to start a family and it wasn’t long before children arrived in the form of Matthew and Chloe. They are now both in their early forties and have blessed us with 4 grandchildren. The eldest of which has just completed her degree and will start teaching in Yate in September. Mary was unfortunately diagnosed with MS in the late nineties and started to use the MS Centre in Nailsea at the turn of the millennium and has been a member ever since. With this life changing diagnosis I also engineered a career change and moved to work with Prudential insurance in Reading on a project to clean up and computerise their pensions administration with a view to outsourcing that string of the business by 2003. A four year project with the chance to create a small final salary pension for me. On completing the outsource project I was then able to take voluntary severance with immediate pension. This enabled me to be at home from age 50 to look after Mary rather than bring carers into our home. I have always enjoyed playing and watching sport. In my youth playing football at a fairly high level, and when my knees said enough, I took up chasing a little white ball with a stick. Golf has therefore been a major interest and excuse for some fresh air for the last 30 years. I am a Trustee and focus on the financial and accounting aspects of supporting the Management Team and the other Board members.  It has been a pleasure to assist the management team and other volunteers at the Brightwell to see the Centre grow and develop into what it has now become. The early years at Bradley Stoke were financially very challenging and I like to think that I have made a positive contribution by volunteering, business mentoring and acumen to  enable the Charity to be the success it is today. As a carer for someone with MS, Mary and I are eternally grateful for the support and assistance that the Brightwell offers. It is therefore  a great pleasure to give something back. Kindest Regards Steve Cocks.

Photo from UKEM eligibility page We have become aware of two really great schemes that might be of benefit to members of our Brightwell Community. With the cost of energy  and the  need to take a greener and more efficient approach to heating and running our homes, any advice and help is always welcome. We would like to signpost a couple of sites that may be of interest and draw your attention to what options and support may be available. The details for these two  options are below. UK Energy Management Go to the website  ukem.co.uk and find out more about what they say….. Fully funded solutions to improve your homes energy efficiency Find out if you are eligible for 100% FREE energy efficiency upgrades, simply entering your postcode: ​At UKEM, we can’t stop the energy crisis, but we can help soften the blow for struggling families throughout the UK. How do I know I’m eligible for the government’s FREE energy scheme? Find out if you’re eligible RIGHT NOW by filling in our quick and simple application form. It only takes a minute to complete and could lead to you saving hundreds of pounds in heating bills throughout the year! ​The best part is that we do all the hard work for you! We’ll organise the grant on your behalf. Plus, we’ll even arrange the fitting at a time to suit you (all performed by certified and accredited installers for your peace of mind). Under the official Government backed ECO4 scheme, you can get FREE home energy improvements! You can get heating upgrades and insulation improvements, completely FREE! FREE Heating System Upgrades FREE Wall and Loft Insulation FREE Smart Controls FREE Solar Panels FREE Air Source Heat Pumps FREE Electric Storage Heaters FREE Gas Boilers FREE First Time Central Heating The second option is Lendology www.lendology.org.uk This is what they say…. Lending decisions for people, by people Home improvement loans for homeowners, funded by local councils. As a Social Enterprise lender, we understand your unique financial circumstances and we never put your interest rate up because of your credit history. We disrupt traditional lending with our decisions powered by partnerships and people, enriching homes and lives through affordable finance. The areas  covered include Home Improvement Energy Efficiency Renewable Energy Disability Adaptation

Volunteers' Week celebrates the amazing contributions volunteers make to communities across the UK. The celebration starts on the first Monday in June every year. It’s a chance to recognise, celebrate and thank the UK’s incredible volunteers for all they contribute to our local communities, the voluntary sector, and society as a whole. This year we celebrate Volunteers’ Week from Monday 3 June until Sunday 9 June. This year’s event is particularly special as it is the 40th Anniversary of this important week Here at The Brightwell, we completely rely on the dedication and commitment of our Volunteers to ensure that our work continues to provide support and therapies for those living with chronic neurological conditions. There is a huge range of Volunteer roles here at The Brightwell. Our expert Oxygen Operators are all fully trained and enable us to provide Hyperbaric Oxygen Therapy for hundreds of people each month. Our Board of Trustees are all Volunteers. We then have others who help on Reception, support the Fundraising Team, help run the Café and a team who specifically ensure our beautiful grounds are maintained. On behalf of all the Staff, Members and Supporters we would like to say a massive heartfelt thank you to each and every person who generously gives us their time, knowledge and commitment. Many of our Volunteers have been with us for many years. In fact, Keith Taylor, our Lead Oxygen Operator, has been with us for over 40 years! If you would like to find out more about being a Volunteer at The Brightwell, please visit www.thebrightwell.org.uk/volunteer Whether you are looking for a new challenge and want to work with us on a regular basis or maybe just help out at events on an occasional basis, we would very like to welcome you to join our Brightwell Community!

Check out our latest newsletter packed full of lots of events, articles and find out how you can help us plan for the future.

When and where 19 Jun 2024, 18:30 – 21:00 Bradley Stoke, Bradbury House, Wheatfield Dr, Bradley Stoke, Bristol BS32 9DB, UK About Come and join us for a fun-filled evening! Please feel free to bring your own drinks (alcoholic or non-alcoholic) and your own nibbles. Buy Tickets £5 each Click here to buy your tickets!

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