Diabetes UK Cymru E-Newsletter Issue 2

Issue 2 | January 2024

Hello and welcome to the Winter edition of our Diabetes UK Cymru e-newsletter!

My name is Lucy, and I am the Digital Engagement Officer here at Diabetes UK Cymru. I hope you had a fantastic festive break, however you celebrated and wish you a happy and healthy 2024!

In this edition, we’ve got lots of news and updates to share from the last three months including big updates from NICE, exciting new research projects at Cardiff University, and a new world-first study to screen adults for type 1 diabetes.

One of my highlights from the last three months was World Diabetes Day, which was particularly special as we were joined by our Together Type 1 Young Leaders at our Senedd event. It was incredibly powerful to hear their stories and experiences of what living with type 1 diabetes really means! Read more about our World Diabetes Day event on page 10.

Another personal highlight for me was the Llanybydder Diabetes UK Group 40th Anniversary celebration, where I learned so much about the group's history and what they have achieved over the last 40 years.

The event brought a whole community together for a day of educating, connecting, and enjoying food!

You can read more about this on page 9.

Last year was full of lots of achievements that we are incredibly proud of, you can read our Snapshot Report for an overview of our work in 2023. We want to say a huge thank you to everyone who has supported Diabetes UK Cymru, whether that was through attending our events, volunteering, donating, sharing your story, following us on social media or getting involved with our campaigns. We have lots to come in 2024 and we can’t wait to get started.

I hope you enjoy reading our Winter issue, please feel free to email walespress@diabetes.org.uk with your story ideas or feedback.

STAY CONNECTED Our Address Diabetes UK Cymru Global Reach Dunleavy Drive Cardiff CF11 0SN

Diabetes UK Helpline Call our confidential helpline with highly trained advisors on 0345 123 2399 between 9am and 6pm weekdays or email helpline@diabete.org.uk

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contents 04 The Bulletin Diabetes UK Cymru news and events

10 World Diabetes Day Wrapped Read about our event at the Pierhead Building

07 The Live Well Movement Hear from our Live Well Champions

11 Rewrite Peters Story Campaign updates

08 Meet our Community Champion Read about Dr Mohammed Ali and his work with communities in Wales

13 Meet our Fundraisers Fundraising activities

08 Together Type 1 Find out what our Young Leaders have been up to 09 Llanybydder Group celebrate 40th years Read about the groups history and how they celebrated the milestone

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The bulletin The latest Diabetes UK Cymru latest news NICE announces final appraisal recommendations on hybrid closed-loop systems for type 1 diabetes Back in November the National Institute of Care and Excellence (NICE) announced details of the outcome of their appraisal for hybrid closed-loop systems – recommending that over the next five years, hundreds of thousands of people living with type 1 diabetes in England and Wales should be offered this next-generation technology to help them manage their condition.

A phased five-year implementation plan is being developed in Wales to make sure people are supported to use the tech confidently and safely. While this means not everyone eligible will be able to get the tech straight away, it will help it to be rolled out fairly. We’re still waiting to hear what funding has been secured, when the rollout will begin, and which devices will be available but we’ll be sure to keep you updated! Find out more about the recommendations here.

Almost £3 million awarded to Cardiff University scientists to help find a cure for type 1 diabetes Last month the Type 1 Diabetes Grand Challenge, a groundbreaking partnership between the Steve Morgan Foundation, Diabetes UK and JDRF UK, announced £2.9 million funding for two major research projects in Wales, in a bid to find a cure for type 1 diabetes.

Leading scientists at Cardiff University, Dr James Pearson and Dr Danijela Tatovic are among six UK teams who today have been awarded prestigious grants totalling over £13 million. This investment comes thanks to the historic £50 million pledge from the Steve Morgan Foundation, to accelerate promising research that could unlock life-changing new treatments for type 1 diabetes. The Cardiff University researchers will lead multidisciplinary teams to investigate how to tackle the immune system attack at the root of type 1 diabetes using promising new treatments, called immunotherapies, which could prevent or slow the condition. Summaries of each newly funded project including the two Cardiff University ones can be found here.

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Do you know the signs of DKA? Every year in October we share the story of Alastair Thomas, an inspirational musician and father of two, who lost his life five years ago to Diabetic Ketoacidosis (DKA) as a complication of his type 1 diabetes.

In October 2018, Ali felt poorly with what he assumed to be a stomach upset taking to his bed. After being sick for another day and complaining about back pain, he started to appear disorientated, collapsed and was taken to Chester Hospital, where he died five days later from DKA.

Ali’s Mum Dee has been campaigning ever since to raise awareness of DKA and the steps to take in an emergency.

Together with NHS Wales his Mum created a leaflet for relatives, partners, and friends to understand what to do in an emergency.

Rachel Burr, Diabetes UK Cymru’s Director said: “We continue to support Dee and remember Ali. This initiative shows that anyone with type 1 diabetes can go into DKA, at any age.

“It’s important to remind people that infections and other factors can seriously affect blood sugars and trigger this life-threatening complication, and that quick action is crucial.” If you would like a copy of this leaflet, please email wales@diabetes.org.uk.

Join our NEW Together Type 1 Instagram community!

In November we launched our new Together Type 1 Cymru | Gyda'n gilydd math 1 Instagram page! This page is a place for young people living with type 1 diabetes in Wales to be together, to learn, and to support each other. Living with type 1 can be frustrating and lonely at times but at Together Type 1 we're changing that. Find us on Instagram @tt1_cymruwales.

Diabetes and the menopause free online event In January, our colleagues in the South-East Coast and London team will be holding a free online event for people living with diabetes and healthcare professionals on Tuesday 23rd. They will be joined

by Community Diabetes Specialist Nurse Anne Eltringham Cox from West Kent Primary Care, who will discuss how the menopause affects women's experience of living with diabetes.

Register for free here.

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World-first study to screen adults for type 1 diabetes opens for recruitment Last year on World Diabetes Day we announced a new world-first study to identify adults in the general population at high risk of type 1 diabetes. The Type 1 Diabetes Risk in Adults (T1DRA) study is now recruiting 20,000 adults, aged between 18 and 70, to find those who are likely to develop type 1 diabetes in the future. It’s led by Professor Kathleen Gillespie at the University of Bristol. We launched a similar study for children – called ELSA – in 2022. This means the UK is now the first country in the world to offer type 1 diabetes screening for both children and adults in the general population, in a research setting.

We know that more than half of type 1 diabetes diagnoses are in adults. But scientists have mostly studied its development in children, so adult-onset type 1 diabetes isn’t well understood. T1DRA will answer important questions about how type 1 diabetes develops in adults and will give us the first-ever picture of how many adults in the UK are at increased risk of developing the condition. It will also mean that people found to be at high risk of type 1 diabetes will get support and monitoring, and access to clinical trials testing new preventative treatments.

T1DRA is funded by the Helmsley Charitable Trust and has been made possible by the UK’s longest-running study of type 1 diabetes, called Bart's Oxford Family study (BOX), which we’ve funded over the last 40 years.

Find out more about the T1DRA study and how you can sign up here.

Do you know how to Hold a Hedgehog?

Wales based Clinical Psychologist Dr Rose Stewart, has written a series of books aimed at children and families living with diabetes. There are currently five books in her series - Diabetes Burnout, Not OK with Needles?, Diabetes Distress & Burnout for Parents & Carers, How to Manage a Mammoth and her new release for 2023 – How to hold a hedgehog. This one features Aneesha, a super star footballer who is getting used to living with Sid the diabetes hedgehog and all his spiky ways. Dr Stewart said: “It’s been really exciting to see Talking Type 1 develop from a passion project into an international book range. We hope that these books can help people with diabetes to access some of the psychological support they need, and most importantly, realise they are not alone!”.

The books are free for anyone in Wales.

If you would like to access them please contact your Diabetes Specialist Nurse or email wales@diabetes.org.uk.

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Diabetes UK Cymru attend 25th Anniversary National Black Police Association conference During Black History Month our Engaging Communities and Volunteering team, Rhian and Becky attended the 25th Anniversary of the National Black Police Association event at Cardiff City Hall. At the event, our team shared information and resources to help support those living with and at risk of diabetes.

We were delighted to be invited as we are keen to ensure our local police force are well informed about diabetes to help those within their teams and out about in the local community. At the event we were thrilled to be presented with a beautiful plaque from the Chief Constable for South Wales, Jeremy Vaughn as a token of their appreciation for our support.

Local Groups and Volunteering

news and updates

Live Well Champion, Lee Morgan, supports people in Rhondda Lee Morgan has lived with type 1 diabetes for nearly 40 years and knows all too well about the emotional toll it can have on an individual and their family. Lee has been a keen supporter of Diabetes UK Cymru since 2019.

During this time he has done a 10-mile walk around Rhondda, completed our One Million Steps Challenge and been part of our ‘Too Often Missing’ event where he created a series of images highlighting the psychological impact of living with diabetes.

In July 2023 Lee Morgan joined our team of Live Well Champions in Wales as he wanted to do more to raise awareness and support people in his local community. During Diabetes Awareness Month in November, Lee set up a stall at his local hospital, Ysbyty Cwm Rhondda to talk to people about diabetes and provide them with information about living well. He is passionate about raising awareness and supporting anyone living with the condition. We're grateful to have him as a volunteer!

The Neath Live Well Hub take on World Diabetes Day at their local Leisure Centre Nicola and Anne from the Neath Wellbeing Group held a diabetes awareness day at Neath Leisure Centre to celebrate World Diabetes Day. Throughout the day they had lots of conversations about diabetes but also about the small steps people can take to improve their wellbeing. They also used to opportunity to spread the word about their group and the activities they do to support people in Neath. If you live in the Neath or Port Talbot area and would like to meet others in your community give the group a follow on Facebook here.

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Meet Our New Community Champion

We recently welcomed Dr Mohammed Ali based in Cardiff to our offices to present him with a certificate after becoming a Community Champion for Diabetes UK. Dr Ali is much valued friend of Diabetes UK Cymru and was honoured with this title for his work in local minority ethnic communities in South Wales.

Earlier this year, Dr Ali devised a series of multi-language webinars and community wellbeing events during Ramadan to provide support and advice to people at risk of and living diabetes in the community. We supported Dr Ali at the launch event of this campaign at the Senedd in Cardiff attended by First Minister Mark Drakeford who was incredibly supportive of the initiative. We will continue to work with Dr Ali and Muslim Doctors Cymru to provide support for Ramadan 2024 with support and advice around fasting.

Together Type 1 | gyda’n gilydd math 1 Our Together Type 1 Young Leaders in Wales have been very busy over the last few months. In September we celebrated one year since the launch of the programme at an event in Manchester, it was great to have our Young Leaders Divya, Kia and Alex represent Wales. The event brought hundreds of young people living with type 1 diabetes from across the UK Together to meet and share their experiences.

In November our Young Leader Kia also attended our Type 1 Family Weekender in Newport as a guest speaker and panellist. Kia spent time answering lots of questions from parents and family members as well as sharing her own experiences of living with the condition. She also talked about Together Type 1 and why it's so important to her. Divya delivered a presentation at our Rewrite Peter’s Story event attended by people living with type 1 diabetes, their families and healthcare professionals. Divya spoke about her story, volunteering as a young leader and the youth programme.

The Young Leaders have also attended social events with other young people living with type 1 diabetes arranged by Local Health Boards, such as Ninja Warrior in Swansea and Escape Rooms in Cardiff. And of course, we were incredibly grateful and proud to have our Young Leaders speak at our recent World Diabetes Day event at the Pierhead Building in Cardiff.

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Llanybydder Diabetes UK Group celebrate their 40th anniversary On Sunday the 19th of November 2023 the Llanybydder Diabetes UK Group held an event to celebrate their 40th Anniversary. The Llanybydder Diabetes UK Group held their first event in aid of Diabetes UK Cymru back in February 1983.

Due to the huge amount of support and success of the occasion they decided to form a group in 1984 for their local community. The group started holding bi-monthly meetings with guest speakers sharing information and advice on diabetes. In this time the group has raised over £150,000 which has funded vital research in Wales and helped local GP practices to secure diabetes equipment.

The committee members, Elizabeth, Ann, and Mr Jenkins, celebrated the group's anniversary with 40 people from their local community at the Llanybydder Rugby Club. At the event, they were joined by the paediatric diabetes nurses from Hywel Dda Health Board who talked about the SEREN Connect resources for healthcare professionals and young people transitioning into adult services. The podiatry team also came along to talk about the importance of keeping your feet healthy, they also shared lots of tips and advice. Throughout the day, Niaomh from the Shared Plate did cooking demonstrations for two simple but delicious nutritious meals.

Our Engaging Communities team, Rhian and Becky, went along to share lots of information booklets and talked about the Live Well movement in Wales. They also provided tools for individuals to use the Diabetes UK ‘Know Your Risk’ tool.

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The Cross Party Group on diabetes Launches a new report on the state of diabetes care in Wales on World Diabetes Day! This World Diabetes Day, Diabetes UK Cymru launched the ‘All-Wales Diabetes Review’, a report produced by the Cross-Party Group (CPG) on Diabetes that reviews evidence highlighting current data, trends and experiences of people living with and at risk of diabetes in Wales.

The report Identifies crucial areas for improvement, pointing out where service and care is not what it should be, providing 20 recommendations for action. The recommendations identified cover a wide range of areas, including awareness, access to data, collaboration between healthcare services, obesity reduction, workforce support, psychological care, technology, education, and funding sustainability. For more information read the summary and recommendations here.

The report was launched at the Pierhead Building in Cardiff by our event sponsor and Chair of the CPG, Jayne Bryant MS. We also heard from the Minister for Health and Social Care, Eluned Morgan, and Diabetes UK Cymru Director, Rachel Burr. The event was particularly special as we were joined by our Together Type 1 Young Leaders, Divya, Kia, Caitlin, Mya, Gareth and Alex who all shared their stories and experiences of living with type 1 diabetes. Their stories were incredibly powerful and inspiring, they highlighted the serious impact diabetes has on their everyday life and the brilliant work our clinicians do every day to support them.

Over 100 people attended the evening, including people living with diabetes, healthcare professionals, charities, and Welsh Government representatives. We also had some stall holders showcasing their amazing work during the evening, including our Together Type 1 Young Leaders, Kidney Research UK, Kidney Wales, SEREN Connect, and Swansea University Medical School.

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Nailing Diabetes Together!

In November we turned Wales blue with our Nailing Diabetes Challenge, which saw lots of people across Wales paint their nails blue to show others living with diabetes they are not alone! It was great to see Primary schools, businesses, colleagues, and even nurseries get involved.

Rewrite Peter’s Story Christmas Card Competition Back in September, we launched our ‘Rewrite Peter’s Story’ campaign to raise awareness of the signs and symptoms of type 1 diabetes and the importance of early diagnosis in GP Practices across Wales. To do this we sent out over 400 GP resource packs which included information about type 1, how to diagnose and signpost patients and most importantly, a reminder to – THINK 4Ts – toilet, thirsty, tired and thinner!

Since we launched the campaign, we have been able to engage with lots of GP Practices across Wales and raise awareness of just how serious diabetes is. We were recently informed that Hywel Dda Health Board are planning to deliver educational webinars about the 4Ts for front-line clinicians and they have also recently distributed ketone and glucometer starter packs to all their surgeries for issuing to patients with suspected type 1 diabetes. This is an incredibly positive outcome; however, we don’t want this work to stop there!

That’s why last month we held a Christmas Card competition, asking children living with type 1 diabetes in Wales to send us their Christmas creations. The winning design will be sent to all GPs in Wales to remind them about the campaign and the ways we can support their practice. We had lots of fantastic entries from Children all across Wales. Our panel of Together Type 1 Young Leaders in Wales voted for their top 5 designs. Below is the winning design from George, aged 7 from Cardiff.

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Meet our fundraisers

Together Charlotte and Christine organised a diabetes bingo night, a musical quiz, and a diabetes day at Canolfan y Fron Community Centre. Charlotte said, “the event at the Community Centre was to raise awareness of diabetes as so many people don’t even know they have it, and those newly diagnosed don’t understand it. It is such a complicated condition”.

Charlotte and Christine’s Diabetes Fundraising Week Last year, during Diabetes Week our supporter, Charlotte, decided to team up with her friend Christine to plan a week of fundraising activities in her local community. As Charlotte has lived with type 1 diabetes for over 16 years she was keen to help others living with the condition as she knows just how frustrating and challenging it can be.

Charlotte said, “it’s frustrating trying to control my diabetes, the highs and the lows and the worry of the damage I’m causing my body even though I try my best. I, along with millions of others, want a cure”.

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At the Community Centre, they were joined by the Gwynedd diabetes nurses who handed out booklets with information on diabetes, and Alan Thomas from the Betsi Cadwaladr Podiatry team who spoke about the importance of looking after your feet.

To help raise money at the event they had a car boot sale, a cake sale, and the team from Cimera held a circus workshop for children and adults. Charlotte and Christine's week of diabetes activities raised a fantastic £678 for Diabetes UK Cymru, Charlotte said,

The event was a great success; I am proud of the amount we managed to raise in such a small community. We raised lots of awareness about a life-changing illness that currently has no cure

freemasons penybont lodge Support Diabetes UK Cymru

In October we were thrilled to be nominated as one of Freemasonrys charities of the year by Master of the Penybont Lodge, Kevin Robertson. Freemasonry is one of the oldest social and charitable organisations in the world with over 200,000 members in England and Wales.

Members of Penybont Lodge contributed to a range of fundraising activities. These proceeds together with two very successful social evenings, allowed Kevin and his wife Maddie, to donate over £1,000 to Diabetes UK Cymru. Kevin said, “this is an important charity for my wife, Maddie and I, as our family has been affected by diabetes”.

Maddie said, “having worked in schools and having type 1 diabetes myself, I recognise the need to ensure an accurate and speedy diagnosis of diabetes”. Kevin said, “Maddie and I are delighted to see the Lodge support this cause. The challenging circumstances in which many find themselves can receive assistance from Diabetes UK Cymru and we know that the charity will put this contribution to good use in supporting their work.’

The Lodge Charity Steward, Bill Wilson, said ‘As a diabetic myself, I recognise the need to support the work of this charity which assists people through advice, care and support through medical research.’ We are so grateful for this very generous donation and want to say a huge thank you to the members of Penybont Lodge for their support.

Blaenau Ffestiniog Netball Team hold festive fundraiser for Diabetes UK Cymru To celebrate Diabetes Awareness Month the Blaenau Ffestiniog Netball Team held a fantastic fundraising event. Six netball teams came together to hold a festive day of fun, they sold lots of tea and cakes, painted faces, and held a raffle with lots of prizes! They raised a fantastic £500 for Diabetes UK Cymru. Thank you to everyone who supported the day and made donations!

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