THE UK Multiple Sclerosis (MS) Register, based at Swansea University, has been awarded just over £1m investment from UK charity, the MS Society.
The Register is a ground-breaking medical research study that seeks to collect information from people with the disease about what it’s like to live day-to-day with Multiple Sclerosis. Established in 2011, it was the first UK-wide register of its kind for MS. It’s estimated that over 100,000 people live with the disease in the UK.
MS is one of the most common non-traumatic causes of disability in young adults worldwide. MS is a disease of the central nervous system that has a huge impact on the life of people affected by the disease. People with MS may suffer from physical disabilities, visual disturbances, fatigue, depression or cognitive dysfunction. All of which can influence activities of daily living, work ability, social participation and overall quality of life.
Through gathering large amounts of information from people with MS the Register is able to provide extremely rich, anonymised data for the purposes of medical research, which, it is hoped, can unlock some of the mysteries behind the disease. The Register collects data from three different sources;
1. Self-reported outcomes from people with MS via website surveys.
2. Clinical records from 47 NHS partner sites.
3. Other routinely collected data from health and wellbeing services (e.g. General Practice).
The MS Society has remained the principal funder since its inception in 2011. Recognising the contribution of the Register to MS Research, Susan Kohlhaas, Director of Research at the MS Society said: “We continue to be incredibly excited about the potential the Register holds in transforming our understanding of MS. Data science is an area that we as a country need to build capacity in. Big data will revolutionise our understanding and treatment of diseases.”
The MS Register is part of the wider Population Data Science theme at Swansea University’s School of Medicine. It is a multidisciplinary theme of international standing, conducting Population Health Studies including clinical trials. The Register benefits greatly from this location owing to the world class expertise and collaborative research culture. This has evolved from pioneering work at Swansea in the 1990’s on linking health data sets and defining rigorous standards for medical records.
With this investment from the MS Society the Register hopes to further develop its platform, enhancing its usability and increasing the amount and type of data it collects. The Register continues to build on last year’s website re-launch, to improve its online interface with users and provide feedback to participants.
The Register is now looking to develop a similar interface for clinicians at its 47 partner NHS site locations. This will allow specialists in MS to see how the condition is affecting the day-to-day lives of patients away from the clinic, becoming an important tool for discussion around treatment options and lifestyle.
Other technical advancements are also in the pipeline in terms of the Register’s ability to capture more complex data types like MRI scan data. A ‘Machine Learning’ tool is also planned to extract and organise information directly from clinician’s letters to ease any administration burden for NHS staff. People with multiple sclerosis (or people acting on behalf of a person with MS) can sign up to the UK MS Register by visiting www.ukmsregister.org
Two teams of chefs to represent Wales at the Culinary Olympics
Two well prepared teams of chefs will be flying the Welsh flag as they take on the best in the world at the prestigious IKA Culinary Olympics in Stuttgart next month.
The senior and junior teams will join around 2,000 chefs and pastry chefs from more than 60 nations at the biggest and oldest international culinary art exhibition from February 14 to 19.
Senior Culinary Team Wales will be led by Nick Davies, culinary craft trainer with Cambrian Training, Welshpool, who combines the roles of team manager and member whilst Sergio Cinotti, from the award-winning Gemelli Restaurant, Newport, takes over the captaincy for the first time.
Junior Culinary Team Wales has Michael Kirkham-Evans, a lecturer at Grŵp Llandrillo Menai, Rhos-on-Sea, as manager and former senior team captain Danny Burke, a partner in Olive Tree Catering, Runcorn, as coach.
Also selected to represent the senior team are pastry chef Will Richards from Cambrian Training, Dylan Wyn Owen, Manchester City Football Club’s executive chef, Matthew Smith, freelance chef from Newtown, Mark Robertson from Coleg Cambria, Wrexham, Jay Humphris from Coleg y Cymoedd and Thomas Martin, a freelance chef from Pontypridd. Logistics manager is Peter Fuchs, culinary director of The Celtic Collection and ICC Wales, Newport.
The senior team has held four events to run through the dishes it will cook for the Restaurant of Nations – one element of the competition – at the Culinary Olympics. The chefs complete preparations with a sold-out dinner at Cobra Rugby Club on January 17.
The team met on January 2 to run through its chef’s edible buffet, a new element introduced for the Culinary Olympics and will complete last minute fine tuning at a final training session on February 3.
“The team has a good mix of seasoned competitors and new members who have brought some fresh ideas to the table,” said Nick, who will be competing at his fifth Culinary Olympics. “Most of the chefs will be competing at the Culinary Olympics for the first time and are understandably excited by the prospect. They have bonded very well.
“Our Restaurant of Nations menu is looking and tasting good and we are perfecting the chef’s edible buffet, which is being introduced for the first time at the Culinary Olympics.”
The team’s Restaurant of Nations menu for 110 covers opens with a starter of halibut, prawn, ravioli, textures of peas, asparagus and wild garlic and Carmarthen ham. Main course is marmalade glazed duck breast, confit leg bon bon, skin granola, root vegetable terrine, carrot puree and port jus. Dessert is rhubarb, apple, white chocolate, stem ginger and pistachio.
The junior team, captained by Callum Smith, The Lion and Pheasant, Shrewsbury, includes pastry chef Alys Evans, Llanerch Vineyard, Pontyclun, Dalton Weir, Home Cooking, Llandudno, Morgan Read, Brook House Mill, Denbigh, Lara Walker, Celtic Manor Resort, Newport, Alice Yeomans, Belmond Le Manoir aux Quat’Saisons, Great Milton, Oxford and James Jarvis, Sebastians Restaurant, Oswestry.
The talented young chefs complete their Restaurant of Nations menu run through with a lunch at Grŵp Llandrillo Menai, Rhos-on-Sea on Tuesday, January 28. They put the final touches to their dishes and the chef’s edible buffet at a training bootcamp this week.
The team’s Restaurant of Nations menu features a starter of Pembrokeshire scallop and roe croquette, seabass ceviche, chilled avocado, gin and elderflower cucumber. Main course is dry aged fillet and short rib of Welsh Beef, sourdough crouton, onion puree and Butty Bach jus. Dessert is chocolate black cherry chilled fondant, white chocolate and griottine cherry custard, crème fraiche sorbet, sesame tuille and sour cherry gel.
Both manager and coach are pleased with the young team’s progress and are looking to the final practice dinner to fine tune the chefs ready for the Culinary Olympics. Most of the chefs are aged between 19 and 21.
“Alys competed with the senior team at the Culinary World Cup in November 2018 and two members went as commis chefs to gain experience,” said Michael. “The junior team is better prepared that we have ever been.
“Our Restaurant of Nations menu is packed with flavour and requires lots of different skills from the chefs. With 50 per cent of the hot kitchen marks awarded for flavour, we are hoping to score well for taste.
“The main course is braised Jacob’s Ladder and a small fillet of Welsh Beef, which seems to be working well with the people who have tasted it.
“Danny is working on the menus and has introduced some elements of the dishes that helped him to win the Northern Europe heat of the Global Chef Challenge.
“We are finalising the chef’s edible buffet, which has 12 courses, including canapes, terrines, a hot rabbit dish and a dessert.”
At the Culinary Olympics, the senior team produces its chef’s edible buffet on February 16 and its Restaurant of Nations hot kitchen menu for 110 covers on February 18. The junior team delivers its Restaurant of Nations menu for 60 covers on February 15 and its chef’s edible buffet on February 17.
Culinary Team Wales is sponsored by the Welsh Government’s Food and Drink Wales, Cambrian Training Company, Grŵp Llandrillo Menai, Castell Howell Foods, Hybu Cig Cymru and Harlech Foods.
Are you missing out on a Council Tax reduction?
IF YOU’RE struggling to pay your Council Tax bill, then help could be available for you through the Welsh Government’s flagship Council Tax Reduction Scheme (CTRS).
The scheme, which will continue to support vulnerable households in 2020-21, currently benefits one in five of all households in Wales. In the last year almost 280,000 low-income households have received help from the scheme, with 220,000 paying no council tax at all. Many more receive other discounts or exemptions.
You may be entitled to pay less council tax if:
• you believe you live on a low income
• you live alone, or with people/children who do not pay council tax
• you are a student
• you are disabled
• you are severely mentally impaired
Understanding why there are still vulnerable households not benefitting from the help they are entitled to is a priority for the Welsh Government. Last year we commissioned research to understand the circumstances of households in Wales and the effects of the UK Government’s Universal Credit on the CTRS.
The interim report out today shows that for many households, the move to Universal Credit can have a significant impact on council tax reduction awards. Whilst many households currently receiving a 100% reduction will continue to do so, for others, the move to Universal Credit is shown to have an adverse impact, particularly for employed households, self-employed households, and working households in receipt of a Disability Living Allowance or Personal Independence Payment.
Full findings of the interim report are available on the Welsh Government website. These findings will now be considered in more detail to inform the next stages of the research and policy development in this area.
Encouraging people to make sure they are not missing out on help they could be entitled to, Finance Minister Rebecca Evans said:
“Ensuring every household in Wales receives the council tax support they are entitled to is an important part of our commitment to making council tax fairer.
“Our scheme is already helping hundreds of thousands of households across Wales, but we know that there are still many missing out on the discounts, reductions and exemptions they are entitled to. I encourage everyone to check the Welsh Government website to find out if they could be paying less.”
Welsh Rugby star Ryan Jones backs NSPCC Cymru
A NEW NSPCC Cymru/Wales service that aims to help children and young people keep safe in their digital worlds and prevent online sexual abuse, has been praised by former Welsh Rugby captain, Ryan Jones, during a visit to the children’s charity’s base in Swansea.
During a tour of the service centre on Friday 29 November, the Wales Rugby legend met with NSPCC Cymru/Wales service practitioners who deliver direct work with local children and their families.
They shared with him their work, through their Protect and Respect service, to support children and young people who may be experiencing exploitation, as well as how they are helping parents who are at risk of mild to moderate anxiety and depression during pregnancy with their preventative mental-health service, Pregnancy in Mind.
A more recent service to be offered to children and young people in South Wales is In Ctrl, a group work programme for children and young people that aims to help them stay safe online.
Ryan said: “It’s been really interesting to find out more about the direct services the NSPCC delivers in South Wales, and how their prevention work with local schools through the In Ctrl service is helping to keep children and young people safe both on and offline.
“It’s reassuring to know that children are being empowered to ask themselves those really important questions when they go online, and increase their confidence in knowing what to do or who to speak to if they come across something that makes them feel uncomfortable.”
NSPCC Cymru/Wales Service Centre Manager in Swansea, Tracey Holdsworth added: “We were thrilled to be able to welcome Ryan to our service centre, thank him for all of his support, and share the work we are doing to help local children and their families.
“Ryan took a particular interest in our InCtrl programme that helps to prevent abuse online. In taking a trauma informed approach, it is designed to offer a safe space to children, young people and their parents to promote learning, build understanding of risk and increase resilience, in their online and offline worlds.
“Our practitioners visit local primary and secondary schools working with pupils who are aged between 9 and 13, exploring issues such as healthy relationships and friendships online, and enabling them to develop skills that will help protect them from grooming and exploitation.”
The work compliments the work of the charity’s Schools Service team in Wales, that visits local primary schools delivering free Speak out Stay safe assemblies and workshops that help children know about the different types of abuse, how to recognise the signs, and explore trusted adults they can speak to if they ever have a worry or concern.
In the 2018/19 academic year trained staff and volunteers delivered the free safeguarding sessions at 12 primary schools in Swansea reaching more than 3,000 children.
Ryan added: “I have attended a Speak out Stay safe assembly, and they are a great way to ensure children with a worry understand they can speak to Childline or a trusted adult about it and know they will be listened to.
“The InCtrl service offered by the NSPCC gives children the confidence to speak out if they come across something that concerns them online – and that’s so important.
“It’s great that parents are getting involved too. Giving them a safe space to talk, and helping them understand the issues facing their children online can help them feel assured talking to their child about their online use and how to keep them safe online.”
Online sexual abuse can happen anywhere that allows digital communication, such as social networks, text messages and messaging apps, email, online chats, voice chat in games and comments on live streaming apps.
Tracey added: “Too many children contact Childline not knowing where to turn having been exploited online. We want children and young people to have a happier and safer life, knowing that whenever they talk to a trusted adult, in school or at home, their concerns will be addressed.
“InCtrl is for children who might be going through lots of exciting changes – moving up to secondary school, getting a first mobile device, and using social media profiles for the first time.
“As exciting as all this can be, it can also be hard to know what to do sometimes and for some children, things can easily feel quickly out of their control, especially if they have had a worrying online experience.”
In Ctrl is carried out mainly in groups and covers themes such as healthy relationships, boundaries, pressure and expectation online, self-care, body image, pornography, and sexting. There is also an option for one-to-one work too, if needed, and anyone wanting to find out more about the service can contact the NSPCC in Swansea on 01792 456545 or SwanseaServiceCentre@nspcc.org.uk. The service is also offered out of the charity’s Cardiff base – CardiffServiceCentre@nspcc.org.uk or 02920 108080.
Children can contact Childline for free 24/7, 365 days a year on 0800 1111 or childline.org.uk.