In this issue: New Year Dinner for MS Society Hastings & Rother Group-2023 3 Fundraising Update 4 Tom’s Impact Award 5 A tribute to Queen Elizabeth II Our beloved Queen 6 Prescriptions at Christmas Reminder 7 New online hub to be piloted in December By National Centre. 7 Scams: Millions face financial disaster 8 Cost-of-living risks revealed in report 11 Trading Standards Advice 13 Scams to mention making an appearance again 15 Candle Fire Safety Tips 15 UK Candle Safety Rules and Tips 16 Reasons Candles Catch Fire 16 East Sussex NHS Trust Nursing Service 17 Your chance to improve MS support My MS My Needs + Friends and Family Surveys 2022 19 Ride London completed! 20 SkyDiving Update 22 Take a moment 23 Local groups & activities 24 Subsidised local taxi off to group members 24 HASTINGS ADVICE and REPRESENTATION CENTRE 25 HARC 26 Big Breakfast Social 26 SAMS - Social and Active with MS - currently meeting via Zoom 26 Yoga 26 Group Contact Details: 28 Group Coordinating Team 28 New Year Dinner for MS Society Hastings & Rother Group-2023 February or March 2023 Coast College Restaurant, Hastings College 1 st Floor East Sussex College Station Approach, Hastings, East Sussex, TN34 1BA Anyone interested in the MS Community who would like for us to investigate for the re-start of the Annual MS Meal organized by the Co-ordinating Group? drop me a line on the Hastings & Rother facebook page or e-mail: Tommy.Earley@groups.mssociety.org.uk or Freephone 0800 7076645 We need to know numbers before we book in December 2022. Can you please contact us to let us know if February or March is better for most people? Menus will be posted via e-mail in the New Year and, on our Facebook Page, as they become available. Prices will be in the range of £28-30. (Hopefully will be subsidised by the Group as usual amount -to be agreed) Cannot wait to meet up again! Fundraising Update Message from our Facebook page: Hi All , Just to let you all know that the total amount that was raised on the Fundraising/Awareness Day was £407.10 Great thanks to everyone on the day for all their help and assistance. Well done — feeling happy. Tom’s Impact Award Whether it's offering emotional support, shaping how we work, campaigning for change or raising vital funds, volunteers are central to everything we do. Our Impact Awards shine a spotlight on their amazing contributions and the impact they have on people affected by MS. Our Tom is one of those lovely volunteers A tribute to Queen Elizabeth II Our beloved Queen Farewell, Queen Elizabeth II. This photo was issued by Buckingham Palace on Sept. 18, 2022, the eve of her funeral. The queen, who died Sept 8th at Balmoral Castle in Scotland, was photographed at Windsor Castle in May 2022 just before her Platinum Jubilee celebrating her unprecedented 70 years on the United Kingdom's throne. Following her death Mark & I wished to pay our respects. On the 17 th September 2022 we caught the 6.26 am train to London Victoria and then a cab to the Tate Modern to join the assessable queue to see Queen Elizabeth lying in state at Westminster Hall. We met so many people in the queue from London, Yorkshire, Liverpool, Colchester. The lady from Colchester showed us pictures of her dad who worked at the palace and stories about his time there. There was a calm presence in the queue which was overwhelming ‘we all wanted to say farewell and be present for this historical moment. We waited patiently for our opportunity to enter the hall for seven hours. I was wheeled in; however, I managed to walk past her coffin and managed to curtsy before saying a few words before heading off Mark too said a few private words. A peaceful experience, one that I am sure I will never experience again in my lifetime. What a momentous day. ‘Disability is no barrier’ Prescriptions at Christmas Reminder I’m rubbish at this so have set reminders in the calendar in my phone New online hub to be piloted in December By National Centre. Submitted by Jo Webber on Thu, 2022-11-10 15:17 Social Connect, a new package of online resources, designed to empower more people across the MS community to come together, share experiences and access peer support, will be piloted in December. Complementing the invaluable services already offered by our local groups, Social Connect is an online hub which will be available on the local support section of the website. It will include a suite of guidance and support for people not formally involved in a local MS Society group who would like to set up or develop their own independent social groups. These may be based around common interests or things that matter to them. For example, a type of MS or a hobby, so they can connect with like-minded people. The guidance will focus on setting up social groups in the area, as well as online, so more people can come together over common interests regardless of their location. The hub will provide practical help on running meetings, and information on how to promote meet-ups and activities. Social Connect has been created to help grow the existing MS community across the UK, to increase people’s emotional well-being and help tackle and reduce loneliness and isolation. Social Connect will go live on our website in December. During the pilot we’ll be gathering feedback to develop the resources further. We hope to provide further updates and next steps early in the new year. For any questions about Social Connect, please contact project lead Gina Meyer at gina.meyer@mssociety.org.uk . Gina will be happy to discuss the project. Scams: Millions face financial disaster Scams have always taken a huge toll on victims but now more than ever, people simply cannot afford to be ripped off Losing money to scammers is never a pleasant experience, but recent research shows that for one in four UK adults, being tricked out of just £100 would push them into serious financial hardship. The pressures of the cost-of-living crisis – with spiralling inflation, energy bills and housing costs – mean that many people on the UK are standing on a precipice between barely scraping by, and complete financial disaster. Being targeted by a scam could be the thing that pushes many people over the edge, National Trading Standards (NTS) has warned. In its annual strategic assessment on emerging threats to consumers and businesses, NTS has revealed that people are more vulnerable to being scammed than this time last year, with 70% saying they would be seriously affected by falling prey to a scam – just as scammers are diversifying the methods by which they target their victims. Changes in consumer behaviour, with more and more people on the lookout for a bargain, is also compounding the problem, as shoppers turn to counterfeit and potentially dangerous goods as alternatives to legitimate products. According to NTS’s research, 36% of people would knowingly purchase a fake item, of whom 41% said they would never have bought a fake product previously. NTS Chair Lord Michael Bichard said: “Seventy percent of people told us they are more stressed about money than they were a year ago. This means people are more likely to be in ‘panic mode’ when making financial decisions – and this is what we see criminals capitalising on. Scams have always taken a huge toll on victims but now more than ever, people simply cannot afford to be ripped off. “With living costs rising across the board, we are anticipating that the trade in fake goods will receive a boost that will put families in danger and cost society greatly in the long run. We’re also braced for a spike in doorstep and cold-calling crime, energy-related fraud and mass marketing scams as criminals target people trying to reduce their bills or take advantage of government support.” Multiple threats NTS is predicting a spike in ‘green’ home improvement scams, with Citizens Advice seeing an 18% rise in complaints year-on-year, alongside a 28% increase in general doorstep crime complaints. NTS analysis of incoming scam calls blocked by almost 10,000 call-blockers installed in UK homes shows an 85% increase from August to September alone in scam calls offering grants for solar panels, loft insulation, spray foam, double or triple glazing and boiler replacement. Those eligible for government grants are likely to be particularly susceptible to criminals claiming to be from accredited government support schemes. When asked how they would find a firm to work on their home. “My message to the criminals exploiting people’s money worries is that they will not get away with it,” said Bichard. “Our teams are working relentlessly to identify and bring them to justice and I would urge the public to help us by reporting scams to Action Fraud or Citizens Advice.” Matthew Upton, Director of Policy at Citizens Advice, said: “From fake texts to faulty goods, scammers are preying on people’s attempts to make their money stretch further. “Anyone can be a victim of a scam and you shouldn’t feel embarrassed if you’re caught out. Reporting your experience gives us the best chance of fighting back and stopping fraudsters in their tracks.” Chartered Trading Standards Institute Chief Executive, John Herriman, commented: “These findings sadly come as no surprise to us, as we know from our own research that over two thirds of consumers see themselves as being much more vulnerable as a result of the cost of living crisis – and we are likely to see further rises in consumer detriment, the like of which the UK hasn’t seen since the days of post-war rationing. For the unscrupulous, current circumstances provide a golden opportunity for the criminally minded to profit from the most vulnerable. “Local Trading Standards services are working in partnership with a range of other agencies, including the Police, and it is even more important that we continue to raise awareness to the public of the increasingly cunning and devious ways scammers are exploiting consumers, but also encourage them to report these to agencies like Citizen’s Advice and Action Fraud, to help us in taking action against these criminals. We continue to work with consumer protection experts to highlight emerging scams and to arm consumers with the knowledge they need to protect themselves at a time when every penny counts. “With Christmas fast approaching this is also a reminder to the public that while counterfeit goods and festive fakes may seem like a money saving deal, they are a false economy and very often associated with poorer quality products, potential safety issues, as well as contributing to the coffers of organised crime.” From today, the NTS scam-fighting website Friends Against Scams , which provides free online training to empower people to take a stand against scams, will include a dedicated section on the cost-of-living crisis, bringing together advice and resources as well as updates on the latest scams to watch out for. Cost-of-living risks revealed in report It is clear that in this cost-of-living crisis, the risks to consumers from the safety of illicit and counterfeit goods, scams, false claims about prices, and energy efficiency are all growing New research highlights increase in scams, counterfeit goods unsafe products and food fraud New research published by Trading Standards suggests that issues related to the cost- of-living crisis are at record levels and set to trigger unprecedented demand and pressure on services in the future. Data for 2021/22 indicates there has been a surge in a range of practices that are harming consumers – including a trebling in the volume of counterfeit goods seized. CTSI has discovered that three quarters of UK adults are feeling more vulnerable due to the cost-of-living crisis and nearly half have seen a rise in scams. Data from the new Impacts and Outcomes Report 2021/22 , from the Association of Chief Trading Standards Officers (ACTSO) highlights that the risks associated with the cost-of-living crisis are apparent across all work areas and are placing increasing demands on Trading Standards services. Highlights from the report include: ● More than half a billion pounds of consumer detriment (£548m) was prevented by Trading Standards across England and Wales ● There has been a significant increase in counterfeit goods, with Trading Standards seizing more than 4 million fake products with a market value of £111m – three times more than the previous year ● The removal of more than 4.2 million unsafe and non-compliant products including dangerous toys, lights and phone chargers ● A significant increase in the amount of illicit tobacco, with 14.9 million illicit cigarettes seized ● More than 7,000 businesses were found to have supplied food that was misdescribed, didn’t declare allergens or was adulterated with toxins ● Concerns that consumers are more at risk of being scammed, with 17,600 scam victims supported and approximately £47m saved by Local Authority Trading Standards in 2021/22. The data for 2021/22 chimes with a new CTSI survey which highlights that across the UK, Local Authority Trading Standards teams have seen an increase in cost-of-living related demands, with around one quarter reporting both an increase in consumers who are vulnerable and in scams and rogue traders. CTSI Chief Executive, John Herriman, said: “This latest research not only demonstrates the significant impact that Trading Standards makes to protect consumers and businesses, but it also suggests that our cost-of-living crisis is likely to exacerbate already high levels of detriment UK consumers are facing. “The current economic situation is inevitably causing consumers and businesses to tighten their belts, but in consequence unscrupulous and rogue traders are exploiting this increased vulnerability. The data clearly shows not only the significant impact Trading Standards is making to address consumer detriment but also that the risks to consumers from scams, counterfeit and illicit goods, and false and misleading prices are on the rise.” “It is imperative to the national economy that that we build and maintain consumer confidence, and this is very much dependent upon us having confidence in the integrity of businesses. By tackling unscrupulous practices whether that is preventing food fraud or removing counterfeit goods, Trading Standards is an absolutely vital component in underpinning confidence in businesses and from consumers, and ultimately helping the UK steer the choppy waters ahead.” Steve Ruddy, Chair of ACTSO, said of the latest report: “Our latest Impact and Outcomes data shows the sheer scale of how much Trading Standards teams save consumers and businesses in tackling detriment, preventing harm, and providing advice and support.” “It is clear that in this cost-of-living crisis, the risks to consumers from the safety of illicit and counterfeit goods, scams, false claims about prices, and energy efficiency are all growing. Trading Standards has a vital role to play in addressing all of these risks; demands are continuing to grow for what are already very stretched services.” Trading Standards Advice New research highlights increase in scams, counterfeit goods unsafe products and food fraud New research published by Trading Standards suggests that issues related to the cost- of-living crisis are at record levels and set to trigger unprecedented demand and pressure on services in the future. Data for 2021/22 indicates there has been a surge in a range of practices that are harming consumers – including a trebling in the volume of counterfeit goods seized. CTSI has discovered that three quarters of UK adults are feeling more vulnerable due to the cost-of-living crisis and nearly half have seen a rise in scams. Data from the new Impacts and Outcomes Report 2021/22 , from the Association of Chief Trading Standards Officers (ACTSO) highlights that the risks associated with the cost-of-living crisis are apparent across all work areas and are placing increasing demands on Trading Standards services. Highlights from the report include: ● More than half a billion pounds of consumer detriment (£548m) was prevented by Trading Standards across England and Wales ● There has been a significant increase in counterfeit goods, with Trading Standards seizing more than 4 million fake products with a market value of £111m – three times more than the previous year ● The removal of more than 4.2 million unsafe and non-compliant products including dangerous toys, lights and phone chargers ● A significant increase in the amount of illicit tobacco, with 14.9 million illicit cigarettes seized ● More than 7,000 businesses were found to have supplied food that was misdescribed, didn’t declare allergens or was adulterated with toxins ● Concerns that consumers are more at risk of being scammed, with 17,600 scam victims supported and approximately £47m saved by Local Authority Trading Standards in 2021/22. The data for 2021/22 chimes with a new CTSI survey which highlights that across the UK, Local Authority Trading Standards teams have seen an increase in cost-of-living related demands, with around one quarter reporting both an increase in consumers who are vulnerable and in scams and rogue traders. CTSI Chief Executive, John Herriman, said: “This latest research not only demonstrates the significant impact that Trading Standards makes to protect consumers and businesses, but it also suggests that our cost-of-living crisis is likely to exacerbate already high levels of detriment UK consumers are facing. “The current economic situation is inevitably causing consumers and businesses to tighten their belts, but in consequence unscrupulous and rogue traders are exploiting this increased vulnerability. The data clearly shows not only the significant impact Trading Standards is making to address consumer detriment but also that the risks to consumers from scams, counterfeit and illicit goods, and false and misleading prices are on the rise.” “It is imperative to the national economy that that we build and maintain consumer confidence, and this is very much dependent upon us having confidence in the integrity of businesses. By tackling unscrupulous practices whether that is preventing food fraud or removing counterfeit goods, Trading Standards is an absolutely vital component in underpinning confidence in businesses and from consumers, and ultimately helping the UK steer the choppy waters ahead.” Steve Ruddy, Chair of ACTSO, said of the latest report: “Our latest Impact and Outcomes data shows the sheer scale of how much Trading Standards teams save consumers and businesses in tackling detriment, preventing harm, and providing advice and support.” “It is clear that in this cost-of-living crisis, the risks to consumers from the safety of illicit and counterfeit goods, scams, false claims about prices, and energy efficiency are all growing. Trading Standards has a vital role to play in addressing all of these risks; demands are continuing to grow for what are already very stretched services.” Scams to mention making an appearance again One of the covid scams that was around during lockdown has started to reappear again. You receive a text message on your mobile to say you have been in contact with someone who has covid and to click on a link, which will then ask you for you details. This is a scam otherwise it would be linked to a government website. Text message on your mobile saying that you are entitled to a grant/discount on your fuel bill and to click on the link. This is a scam as the link asks for your details and has nothing to do with your own electric/gas supplier. Text message on your mobile looks as if it has come from your daughter/son/granddaughter/grandson to say their mobile phone has been damaged/broken so they are texting on a friend's mobile and can they send £800 for a new phone to the account below. Crypto currency scam, advert on a person's Facebook , asking to send money to an account saying a good investment etc. £10,000 was sent to the so-called company and now the consumer cannot get hold of the company. Candle Fire Safety Tips When is candle fire safety week in the United Kingdom? As the UK winter sets in the sales and usage of indoor candles escalates. CANDLE SAFETY REGULATIONS UK: Candle Fire Safety Week takes place towards the end of November each year. The main purpose is to remind the public about using wax candles safely. Using lit candles at home can be a fire hazard. They should be used and handled carefully following these candle safe tips. Wax candles can cause house fires and property damage if they are left burning unattended or placed too close to clothes or furnishings. You can reduce the inherent risks that exist with using candles by following these safety guidelines. Make a note of these dos and don'ts of candle fire safety tips if you plan to use them at home. UK Candle Safety Rules and Tips DO... ● Place lit candles inside a purpose-made candle holder and put them on a heat-resistant surface. ● Make sure they are held firmly upright by a stable holder so they will not fall over. ● Take care with night lights and tea lights because they get hot enough to melt plastic (a television is not a fire-resistant object). ● Keep them out of draughts and away from curtains, fabrics, and furniture. ● Keep clothes and hair away from the naked flame. ● Put it somewhere else if you could accidentally lean across or brush past it. ● Extinguish candles before moving them. ● Use a snuffer or a spoon to put them out. ● Always double-check that they are completely out and not still smouldering. DO NOT... ● Put them under shelves and make sure there is at least one meter between a candle and any surface above it. ● Leave candles placed within the reach of children or areas that pets can get into. ● Put two or more candles closer than 4 inches (10 cm) together. ● Let anything hazardous fall into the hot wax (e.g. matchsticks). ● Leave them burning and you should extinguish candles before you leave a room. ● Blow them out because it can send sparks and hot wax flying around the room. ● Go to sleep with a candle still burning and never leave a burning candle or oil burner in a child's bedroom. Reasons Candles Catch Fire The principle reason that candles catch fire has to do with how they burn. Obviously the candle's string wick is flammable but that is not the part which burns. As the wax is drawn up the wick tiny waxy particles catch fire, create a small ball of flame, and then disperse into the air. East Sussex NHS Trust Nursing Service I think it has been some time since the MS Nursing team has been able to provide any kind of update to the community of people with MS across East Sussex. However, here we go! I am Trish Easton. I am the MS Clinical Lead Nurse. I was the MS Nurse based at Conquest for about 6 years until 2019. I briefly left to return to oncology where I had previously been a Clinical Nurse Specialist but found I missed MS too much so came back as soon as I could. The team now consists of 4 nurses and one MS coordinator. Michelle and Nadine are based over on the Eastbourne side and Holly is Conquest based. I work both sides. I will continue to work to try to increase our team and meet the needs of our current population of 920 people with MS across our Trust catchment. The MS Trust has identified that the number of people with MS is likely to increase by 2.4% annually. The team is passionate about providing excellent levels of care, but we recognise we do have limits to what we can provide due to resources. I do appreciate feedback as we move forward. COVID has proved to be a tough and challenging time for everyone. It changed the way we provided our service for the period of lockdown and beyond. Despite COVID still being present we are now offering face to face appointments at Conquest and Eastbourne sites as well as telephone clinics for those people who cannot get to the hospital. The team value face to face contact and believe this can allow for detailed assessment of individual needs. We can offer a limited number of Home visits in special circumstances but really do have to keep these for people who are completely housebound. This has an answer phone and messages are collected at least twice a day. Messages are then given to the appropriate nurse for addition to their telephone clinic for that week if non urgent or triaged according to need. This way we hope all calls and queries will be handled within 48 hours. The main reason we have done this is the MS Nurses are often in clinic, on ward visits or in meetings which make it difficult to answer their mobile phones. We want to ensure people have a point of contact and know their calls will be collected. I would ask you not to TEXT the nurses please We also have a generic email address which can also be used. This is a safety net as there are times when the MS Nurses are on leave or perhaps off sick E-mail: esh-tr.MSNurseServiceEastbourne@nhs.net We now have a generic phone number which we would encourage people to use: Telephone: 0300 131 5233 The Future Moving forward: ● It is our hope we would be able to offer more of the Disease modifying Therapies locally for those people who are eligible. ● We have issued our first prescriptions of Sativex and look forward to auditing how this impacts the symptoms of those who have completed the trial. ● Our Team details should also soon be available on the Trust website. ● We are in the process of updating our relapse protocol to facilitate communication between the Team and our GP’s Please let your MS Hastings and Rother Group Co-ordinator team know by contacting 0800707 6607 6645 - Tom Earley Group Coordinator for hastingsrother@mssoiety.or.uk what content you would like for future updates. Best wishes Trish Your chance to improve MS support My MS My Needs + Friends and Family Surveys 2022 Taking part is voluntary and all answers are confidential. If you have any questions or would like to complete the survey by phone please contact evidence@mssociety.org.uk or call 0300 500 8084 My MS My Needs is the largest survey of people with MS in the UK. Run every three years, alongside our Friends and Family Survey, the survey helps us understand the priorities of the wider MS community. The results are invaluable for our campaigning work. They guide our organisational strategy and priorities. And they’ve been key to opening up conversations with decision makers in national government and local services about the things that matter to people with MS. ● If you have MS, complete our My MS My Needs survey online on the UK MS Register page ( ukmsregister.org/mymsmyneeds ). ● If you have family or friends with MS, complete our Friends and Family survey online on our Alchemer page ( tinyurl.com/friendsandfamilysurvey ). Ride London completed! After being unwell in the lead up to the ride I was made up to complete the ride in a respectable 7hrs 1 min and a few seconds. A good day was had despite the weather's attempt to spoil it. Finished the day watching the professional women race, fast! Mark’s Story I am taking part in Ride London 2022 on the 29th May riding 100 miles and raising money for the MS society. My wife Linda has Multiple Sclerosis and together we live and cope with the condition. Linda is always positive and focuses on what she can do and not what she can't. We are supporting the ongoing research into the condition and hopefully one day a cure if not for us then others. Please join in and support the MS society with their work to fight MS