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    Welcome to the Spring edition of the ADSHG newsletter. We are exceedingly grateful to all our amazing volunteers who work tirelessly to support and promote the ADSHG. In conjunction with our website and social media platforms our newsletter aims to keep you up-to-date with the latest news and developments from across the Addison’s community. Behind the scenes the ADSHG has been working hard to gain a better understanding of the challenges members sometimes face in gaining safe, effective care. As a result, we are delighted to introduce new member benefits in this edition and some changes in how the ADSHG operates.


  4. The upgrade was previously announced in our look ahead to 2019, our new website is now live. A key objective is to improve the mobile readiness of the site, making it easier for emergency teams to find the information they need, quickly. We will be building upon our existing range of publications to include new videos, pod casts and digital resources to support people affected by Addison’s. The website was funded in-full thanks to a grant from the Transform Foundation. Led by former executives at Amazon & Orange, Transform are a new breed of grant awarding bodies that focuses on empowering communities through digital technologies. The members' forums will remain at www.addisons.org.uk/forums The "old" addisons.org.uk site will be phased out over the next few weeks. Please update your bookmarks and start using https://www.addisonsdisease.org.uk!
  5. A look ahead at 2019

    Paramedic training is go! Earlier this month we kick started our paramedic training project, with the generous financial support of the Society for Endocrinology (SfE). Our aim is to reach as many paramedics and ambulance crews as possible, all over the country, with a seminar focusing on adrenal crisis and emergency management of Addison’s. The course comprises a module on Addison’s Disease set in context with the JRCALC guidelines for emergency management. Each seminar is complemented by members’ own experiences. We know that paramedics learn not just through theory, but by hearing real life accounts from real people. Following an overwhelming response from over 50 members in December, our two volunteer paramedic training coordinators Polly and Richard are matching volunteers up to training dates. This is taking a little longer than planned, because of the massive, fantastic response from members - please bear with us! In early January, we secured commitments from 3 ambulance trusts and a medical college, to deliver over 300 training places this year. Under the auspices of our Clinical Advisory Panel (CAP), we’re working closely with SECAmb (covering Kent, Surrey and Sussex) to prototype a training programme for their paramedic apprenticeship scheme. This will see us delivering training to their trainee paramedics during 2019. We’re continuing to pursue ambulance trusts at senior level to get their participation. We also have a shortage of volunteers in Northern Ireland - If you’d like to get involved, drop Polly an email and say hello (pmarshall@addisons.org.uk). Getting our voice heard During 2019 we will be renewing our efforts to engage healthcare policy makers and legislators. We have recently become members of Rare Disease UK, who focus on lobbying for rare diseases, like Addison’s. In February, we will be attending a reception at Westminster to press our case directly with MPs. We want to remind our elected representatives that rare diseases need just as much attention as better known conditions such as diabetes. Meds for life – for everyone Later in the Spring we’ll be launching our Meds for Life campaign, initially targeting Clinical Commissioning Groups (CCGs). We’ll be reminding them that people with Addison’s should be prescribed at least 56 days’ meds at a time. Sadly, many members report problems getting sufficiently long prescriptions (especially accounting for sick day rules over the winter). This isn’t a Brexit issue, per se, but a well ingrained, clumsy, supposedly cost-saving policy that needs to be tackled head-on. Building upon the NICE guidelines for Addison’s, and with the support of Prof John Wass, who is Clinical Reference Group Chair for Endocrinology in the UK, we will be engaging with all the CCGs in UK to persuade them of this important, overlooked need. International Addison’s Day In May we will be celebrating International Addison’s Awareness Day on President JFK’s birthday (29th May). We will be asking members to take awareness leaflets and posters into their local GP surgery. Many GP surgeries have expressed an interest in hosting a patient-led information session. If you’d like to get involved, contact your local GP Practice Manager to arrange a session. We can provide presentation packs, leaflets and posters, just signup here. Our new Unconference is an AGM++ This year we’re planning a new approach for our Annual General Meeting – as an UNconference. Once again, we will be meeting at Friends House in London Euston on Saturday 29th June (save the date!). This year, our formal AGM will start at 4pm and is free to attend for all members. The AGM will be preceded by our new unconference, starting at 10am. The conference will be focussed on a range of topics of interest to the Addison’s community - and be open to all. We’re delighted to be joined by Prof John Wass as our keynote speaker. There will be several birds of a feather sessions, emergency injection training, panel discussions and medical talks, featuring our amazing community and volunteers. We’ll shortly be announcing the full agenda and ticketing arrangements, keep an eye out on our website and social media for details. Our new website – optimised for the emergency services and mobile Just last week, we secured a £18k grant from the Transform Foundation, to fully fund the redevelopment of our website. Led by former executives at Amazon & Orange, Transform are a new breed of grant awarding bodies that focuses on empowering communities through digital technologies. You’ll see a phased migration onto our new website over the coming months, which we hope will be concluded in the autumn. A key objective is to improve the mobile readiness of the site, making it easier for emergency teams to find the information they need, quickly. We will be building upon our existing range of publications to include new videos, pod casts and digital resources to support people affected by Addison’s. If you have thoughts or ideas for our new website, let us know. Helping people pre-diagnosis, online As part of our new website initiative, we will be leveraging recent grant support from Google (worth $125k per year) in a new outreach project designed to help people pre-diagnosis with their symptoms. Although there are lots of materials available on the internet about Addison’s, sadly not all are medically accurate or safe. We want to help people experiencing Addison’s-type symptoms to get quick access to accurate, reassuring information they can trust. We also hope to begin rolling out an interactive e-learning course for people newly diagnosed. This will feature the best elements of our existing publications and resources, to provide a tailored introduction into living well with Addison’s. We’re currently seeking grant funding for this initiative – if you’d like to help sponsor this work, let us know. Medical research – more, more, more At our planning day this month, the trustees reaffirmed their commitment to funding medical research into Addison’s Disease. This year, we will be introducing two new medical research grants, in addition to the existing Albert Potter Memorial fund and Annette Louise Seal nursing awards. The new grants are aimed at clinicians in the early stages of their careers. We want to encourage and support the next generation of medics to take an active interest in Addison’s and to develop their awareness of adrenal insufficiency. One grant will be named in memory of Sue Chambers, a dearly missed member. If you have thoughts for a good name for the second award (which will be targeted at A&E clinicians), let us know either by email or on Facebook or Twitter. Addison’s Ireland – keeping busy! Later in 2019, Addison’s Ireland will be overseeing the delivery of a new, 32 counties project in partnership with Professor Mark Sherlock at Beaumont Hospital. We’ll be deploying over £8k in memory of Shane Nicholls, a 10-year-old lad from Warrenpoint, whose family and friends did so much to raise funds and awareness following his passing from an adrenal crisis. We’ll be sharing updates from the project team over the year on our website. If you’d like to help in any way, contact our Addison’s Ireland trustee Rachel Bracken. Working harder for you through “smarter procurement” Over the past 3 months, we have been looking for ways to reduce our overheads. We want to make every penny work as hard as it can. Our new “smarter procurement” strategy is already delivering savings : · A 73% reduction in the costs of ongoing accountancy services · A 50% reduction in the costs of ongoing membership services & administration · A 40% reduction in newsletter postage costs, through negotiation with Royal Mail and our mailing vendor · A 46% reduction in the costs associated with our statutory “independent examination” (financial audit) · A 40% reduction in membership survey costs As part of this initiative, in April we will be transitioning our membership services operations from Lee Harper Holt LLP to the Society for Endocrinology’s commercial arm. Our accountancy services will also be moving from Harrison Holt LLP to FMCS, a specialist accountancy practice based in Oxfordshire. These changes will deliver substantial savings to our charity, whilst improving the service we deliver to members. Please bear with our new team, led by Hannah & Joanne (memberships) and Frank (finance), as they settle in and get to know everyone. More membership benefits – legal helpline We’ll be introducing some new membership benefits over the coming months. The first to launch, will be a legal helpline for members delivered in partnership with Moore Blatch, a leading medical negligence & employment law firm. Their team of qualified solicitors will be able to provide free advice on issues relating to concerns about NHS treatment, whether in hospital or delivered by the emergency services. We hope to gain a better understanding of the challenges members sometimes face in gaining safe, effective care which we will use in our campaigning in 2020 and beyond. Addison’s in the workplace Late last year, we discovered from our employee survey that many people experience difficulties at work in relation to their Addison’s. This doesn’t have to be the case. We regularly get asked to provide advice to employers and trades unions who are trying their best to support people with Addison’s in the workplace. So, we will be rolling out a new set of resources for employers and employees over the summer. We hope to build this into a larger campaign through 2020. So, if you’ve had a poor experience at work or have a fabulously supportive employer, we want to know! Do get in touch. Community fundraising – get involved! Our community fund raising initiatives are already getting into their stride. We are delighted to have 20 amazing fundraisers running for us in the London Landmarks Half Marathon on Sunday 24th March. We’ll be out in force to cheer them on - if you’d like to come along on the day, drop Noel a line to get details on where we will be on the day. For the first time ever, our Addison’s Ireland team have their own sports fundraising event. We’ve worked hard to secure 3 places in the Dublin marathon in October. If you’d like to run for us and raise funds, signup here. Or come along on the day and give our team a cheer! Other sporting events include our first Scottish event - the Great Scottish 10k In Glasgow and the Great North Run in September. We have a handful of places available, so if you or someone you know are sporty, ask them to signup here. But, you don’t have to run to help our charity. All our runners would appreciate your sponsorship - check out our JustGiving site for further details and give their fundraising a boost with a few quid, if you can. It means so much to our fundraisers. And there’s more – new book, social media, #BeanieHatChalllenge – and more! Over the past few months our trustee Professor Simon Pearce and former ADSHG trustee Sarah Spain have been beavering away on a new, definitive guide to living well with Addison’s. Following their hard work, we will be launching their new book – “Living with Addison's Disease – A Guide For People With Addison's, Supporters and Professionals”. We’re been aided by contributions from Prof John Wass, Dr Vicki Rouse, Dr Tim Cheetham and many others. The book will be available globally via Amazon in both hard copy and Kindle/eReader formats. Keep an eye on our website for further details in March.
  6. Our community fundraising team for Addison's Ireland are pleased that we will be represented at this year's Dublin marathon. Places are allocated on a first-come, first-serve basis. If you (or a friend) want to get involved, simply complete this form before July.
  7. Speaking with manufacturers and the Department of Health recently, there are very advanced plans already in place to ensure continuity of supply regarding Brexit. The government has recently set out a summary of recent preparations, including contingency arrangements for freight/import of medicines in the event of WTO trading post March 2019. Some (but not all) suppliers, manufacture in the UK and they have stockpiles of the materials they need, on hand. For those that don't, the Department of Health is providing tens of millions of pounds to enable manufacturers/distributors to create additional warehousing space (refrigerated as required). Although the government won’t release actual figures (on grounds of commercial confidentiality), there is a general acknowledgement that they have been preparing 3 months++ of supply. Manufacturers are also gearing up with 2 months++ of supply. That's almost 6 months of meds here in the UK within the NHS supply chain, ready and waiting. It’s worth noting that pharmaceutical companies have a keen interest in ensuring continuity of supply, as that’s how they get paid. The government is also painfully aware of the sensitivity of this issue, following ongoing lobbying by MPs on behalf of constituents. Ongoing Challenges Putting Brexit aside, there have been and continue to be practical challenges in certain parts of the country when it comes to obtaining enough medicine on prescription. We’ve been working with GP surgeries up and down the country to understand their issues. In practice, the challenges with repeat prescriptions are simple, internal to the NHS and nothing to do with Brexit. In the NHS, GP’s contracts are overseen and administered by almost 200 clinical commissioning groups (CCGs). They tell the GPs what they can or can't prescribe - and how much to prescribe at a time. This varies across the country (based on local advice) but means that one CCG can permit 30 days of meds and another the recommended 56 days, even within the same county. Our Forthcoming Campaign – “Meds For Life” Later in the Spring we’ll be launching our “Meds For Life” campaign, to engage with every CCG in the country setting out the specific needs of people with Addison’s Disease. We’ll be reminding the commissioners that people with Addison’s should be prescribed at least 56 days’ meds at a time. Sadly, many members report problems getting sufficiently long prescriptions (especially accounting for sick day rules over the winter). This supposedly cost-saving policy needs to be tackled head-on. Building upon the NICE guidelines for Addison’s, and with the support for Professor John Wass, who is Clinical Reference Group Chair for Endocrinology in the UK, we will be engaging with all the CCGs in UK to persuade them of this important, overlooked need. We’ll be proving members with regular updates as the campaign develops during 2019, in our newsletter and in our online forums. In the meantime, members may find the following resources useful when talking with their GP : · Caring for the patient with Addisons : information for GPs · Diagnosing Addisons : a guide for GPs
  8. In this issue we have an update from Addisons Ireland, and update on our Special General Meeting held in November plus an introduction to our new CEO. It's packed with 24 pages of news, views and opinions. Download your copy now!
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    Addison's Disease Self-Help Group Newsletter 134, December 2018 Our latest members' newsletter is available for download. It's 24 pages packed with news, views and advice from the Addison's community - to the Addison's community. Page 2 : Introduction to the Social Media Team A note from the Editor Page 3 : Hello, my name is... Chris Pointon explains how his wife's experiences of palliative care drove this initiative Page 4 : Introduction to the new CEO Message from the Chair, Andrew Glass MBE Page 5 : Report from the Guest Speaker at the AGM, June 2018 Professor Rob Murray's talk about EU AIR (EU Adrenal Insufficiency Register) Newsletter front covers Page 6 : View from our treasurer An update on our conversion to CIO (Charitable Incorporated Organisation) Page 7 : Fundraising update - supprt from Google, Iomart and SM&B Meet the trustees Congratulations to Prof Wiebke Arlt Page 8 : Emergency injection training Julie's ambulance awareness update Royal Free patient group Page 9 : Minutes of SGM, November 2018 Page 10 : Addison's Ireland update Press releases Page 11 : Volunteers wanted Medical research grants Page 12 : Ask the experts Page 13 : Pump problems Page 14 : Stories from the Addison's community Page 15 : Great Scottish Swim Adrenaline junkie? Pages 16 & 17 & 18: Donations & fundraising Pages 19 & 20 : Event calendar Page 21 : 2019 subscriptions Pages 22 & 23 : Spotlight on social media Page 24 : Back cover Christmas card 2019 competition Contents and contact details


  10. ADSHG headed north of the border to Glasgow earlier this month to the Society for Endocrinology's annual three-day conference. Over 1000 clinicians were in attendance at the Glasgow SECC, one of the UK's largest gatherings of the endocrine medical community. Our amazing volunteers (including Alison, Anna, Jennifer, Noel and our founder and patron Deana Kenward MBE) worked flat-out to raise awareness amongst doctors and endocrine nurses on adrenal insufficiency. By the end of the conference, only a few ADSHG publications, posters and leaflets remained - a testament to the success of the event in ensuring Addison's Disease is well recognised and understood by medics. During the conference, we were also delighted to award the Annette Louise Seal Memorial Award to Chona Feliciano, Senior Clinical Nurse Specialist at University Hospitals Birmingham NHS Foundation Trust. Chona had initiated a study to better understand the Hypothalamic-Pituitary Adrenal axis recovery rate of patients with Glucocorticoid-Induced Adrenal Insufficiency (GC-induced AI). Thanking our charity after the event, Chona said "I am honoured and humbled by this award". Her winning abstract was published at the conference for all attendees to learn from - we are thrilled to support Chona's research with this bursary. Commenting on the success of the event, ADSHG's new Chief Executive, Neil McClements said : "It's vital that our Addison's community actively engages with the endocrinology medical community, to raise awareness and develop our shared understanding of this rare disease. It's been wonderful to meet key members of the endocrine community at their main conference of the year. We've been overwhelmed with offers of support and collaboration from the medical community, which we will be progressing during 2019." He continued : "I would particularly like to recognise the wonderful efforts of our volunteers - Alison, Jennifer, Anna, Noel, Deana, Stewart, Linda, Bernadette & Terri - who put on such a informative display and patiently answered a seemingly unending number of questions from attendees. They worked tirelessly throughout the conference to raise awareness of Addison's - we simply couldn't have done it without them!" Our thanks to the Society for Endocrinology for graciously funding our exhibition stand and travel expenses for our volunteers to attend.
  11. Starting in George Square in the centre of the city, the Great Scottish 10k runners will cross the River Clyde and pass iconic landmarks and buildings including The Hydro, The Finnieston Crane and Pacific Quay as they make their way toward the McLellan Arch and the finish line in Glasgow Green. Runners cross the Clyde on four occasions using the Kingston Bridge, Clyde Arc, King George Bridge and Glasgow Bridge. We have secured 5 places for people to run on behalf of Addison's Disease Self-Help Group. Each entrant receives : free entry to the run free Addisons T-shirt free Addisons fundraising swag bag If you or a friend woudl liek to run for us, simply complete the signup form here by 31st May 2019.
  12. The slides for his presentation are attached. prof-eystein-husebye-sgm-presentation.pdf
  13. The meeting was quorate with over 40 people present, including some partners and family members. The meeting commenced at 18:15. 1. The meeting started with a welcome from the Vice-Chair, Amanda Colman. 2. Amanda Colman introduced the Trustees in attendance and the charity’s new Chief Executive. 3. The Treasurer, Paul Macnamara, outlined the context to the statutory Charitable Incorporated Organisation (CIO) process, set out the resolution and its benefits to our charity. The online votes made by members who could not attend the meeting in person were noted. 4. There was a period for free discussion and questions & answers, chaired by the Treasurer. 5. The meeting was asked to consider the following resolution : “The Trustees and members resolve that, in accordance with clause V of the current ADSHG Constitution, ADSHG shall transfer its activities and assets to the new CIO, following which the original charity shall be dissolved and removed from the Register of Charities.” On a show of hands, the resolution was carried unanimously. Proxy votes included 94% votes for and 6% votes against. 6. As the resolution has been approved by members, the Vice-Chair on behalf of the Board of Trustees instructed the Treasurer and Chief Executive to make the necessary arrangements (and inform our regulator, the Charity Commission) to implement the resolution, effective 1st January 2019. 7. The meeting closed at 18:40 with an opportunity for informal discussions ahead of the medical seminar by Professor Eystein Husebye. After the formal SGM, Professor Eystein Husebye of Haukeland University Hospital (Bergen, Norway) gave an informative, interactive talk on his recent clinical research work concerning adrenal insufficiency. Note : following the SGM, the Trustees met briefly to simply to note the result of the SGM and to confirm plans to put the members’ decision into action, aiming to complete the transition for ADSHG to the new CIO at year-end 2018.
  14. The half marathon starts on Pall Mall and winds its way around some of the most iconic sights of the capital. All the roads will be closed as over 13,000 runners pound their way around a course that takes in St Paul’s Cathedral, Bank of England, The Gherkin, Tower of London and back along the Embankment past the London Eye to the finish line outside Downing Street. If you are (or know) a runner that would like to fundraise for us, signup here. Every Addison’s runner will get free entry to the race, an ADSHG T-Shirt plus a box of ADSHG fundraising swag. For the fastest overall time in our team, we’ll also be awarding a special prize – one for ladies and one for men. And there’ll be an extra special prize for the person who raises the most money for our charity by the end of April. So, what are you waiting for? Get involved! It’s going to be an amazing day – and everyone can get involved! And you don’t have to be able to run, to help…. We’ll be assembling a group of ADSHG supporters to cheer on our team, raise awareness with spectators and raise some funds on the day. So if you fancy a day out to cheer on our team & make some new friends just come along – we’d love to see you there! Just save the date - Sunday 24th March 2019 in Central London.
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    This Personal Medical Emergency Plan template is a useful way of summarising your personal medical needs in the event of an emergency, for friends, family or work colleagues. Simply download the document (it's in Word format) and customise according to your needs. This document has been reviewed and approved by Professor Simon Pearce, our ADSHG Trustee and member of our Clinical Advisory Panel. Our thanks to member Suzanne Smith for suggesting this resource and putting it together for review.


  16. The BSPED aims to improve the care of children and young people with endocrine disorders and diabetes mellitus by bringing together professionals from a range of disciplines. The conference in Birmingham brings together clinicians from all over the United Kingdom to share ideas and develop best practice. Our team of volunteers - Sue Rookes, Sue Partridge & Hilary Close were assisted by ADSHG's CEO, Neil McClements. We ran a display stand for 2 days of the conference. There were many useful discussions with consultants and nurses involved in caring for children & young adults with Addison's. Many medics confessed that they had yet to see a case of Addison's in their own clinics. Several consultants were grateful for our supply of materials for their clinics - both for patients and as training aids for their junior doctors. We also enjoyed participating in the symposiums, putting the patient's voice across to a medical community who were keen to listen to our perspective. On the final day of the conference, our CEO met with members of the BSPED Executive Committee to explore our shared mission in helping people affected by Addison's. Following this successful introduction, we hope over the coming year to work together with BSPED members to help them with their medical research and to provide expert patient feedback to endocrinologists working in this area. Thanks to Sue, Sue & Hilary, everyone left the stand with a bundle of our literature, leaflets, posters and other educational materials to take home and spread the word. Our thanks to our three amazing volunteers - Sue, Sue and Hilary - and also to BSPED's Executive Committee for facilitating our attendance and providing the stand, at what was a very successful event.
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About us

The Addison’s Disease Self-Help Group is the support group for people with Addison’s disease or adrenal insufficiency and their families in the UK and Ireland.The group was formed in 1984 and is a UK registered charity no. 1179825.

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