Last December, we conducted our largest membership survey, ever. Over 600 members shared their thoughts on how we are doing - and where we can improve. Our trustees have already been making good use of the results. Earlier this month, we held our first Trustee Planning Day to think about our objectives for 2019/2020 and kick off some initial projects.

The results of the survey are online (take a look here and here). We’ll be publishing a summary in a forthcoming newsletter. We welcome your thoughts, too - drop us a line at [email protected].

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 ([email protected]).

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 later in the year. 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.