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!
Over recent weeks, people have become increasingly alarmed about media stories of Brexit-related shortages of medicines. We’ve been working closely behind-the-scenes with the Department of Health, key pharmaceutical suppliers and the NHS Specialist Pharmacy Services team to represent members’ views.
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.
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
We're delighted to be participating in the Great Scottish 10k run in Glasgow on Sunday 29th September 2019. Places are available now for runners in support of ADSHG.
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.
The Society for Endocrinology invited the Addison's Disease Self-Help Group to their annual meeting Glasgow on 19th-21st November 2018 to help raise awareness of adrenal insufficiency amongst clinicians.
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.
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 firstname.lastname@example.org.
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@example.com).
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.
We’re proud to have been selected as a charity partner of the London Landmarks Half Marathon on Sunday 24th March 2019. We have 8 places available for people willing to run and fundraise for Addison’s Disease Self-Help Group. Do you fancy taking part? Know a friend, family member or neighbour who’s quick on their feet? Well, this could be right up their street!
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.
Last week, volunteers from Addison's Disease Self-Help Group headed to Birmingham, to the British Society for Paediatric Endocrinology & Diabetes (BSPED) annual conference. Our aim in attended was to raise awareness of Addison's Disease amongst the medical fraternity and to participate in related symposium discussions.
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.
The autumn edition of the ADSHG newsletter is now available in the Publication centre and members can download it here...
This new-look issue is, as always, packed full with news on medication, ambulance awareness, members' experiences, fundraising events and social meetings. With Christmas fast approaching, there is also timely advice on how to reduce psychological stress.
This issue of the newsletter also contains the 2018 Christmas catalogue order form, highlighting items and special offers available to purchase from our online Shop.
Download the September 2018 issue of the ADSHG newsletter and the Christmas catalogue order form here.
We would love to hear your feedback and views on the new look newsletter via the forum topic & poll here...
Membership of Addison's Ireland is open to anyone in Northern or Southern Ireland with Addison's or other forms of adrenal insufficiency that result in steroid dependence. Family members, friends or anyone with an interest in adrenal medicine are also welcome. You can join as an e-member receiving your material electronically through the website or as a postal member.
Aims of the Addison's Ireland
Addison's Ireland focuses on health-related issues specific to the Republic of Ireland, where the health services and other state supports differ from the UK, and aims to encourage greater medical awareness of our needs within the Irish health care system and supported by the Addison's Ireland Clinical Advisory Panel (AICAP).
Joining Addison's Ireland
Please join the ADSHG in the usual way and those based in the Northern or Southern Ireland,will automatically become a member of Addison's Ireland too. You can join at any time of year and will receive contact details for the Addison's Ireland Co-ordinator Rachel Bracken when you join the ADSHG.
The Scottish Medicines Consortium has approved Alkindi (hydrocortisone granules in capsule form) for restricted use in NHS Scotland. Following a submission by ADSHG, the SMC said "We would like to thank you for the time and effort taken to produce your submission. Capturing the views and experiences of patients and carers is an important part of the SMC process and plays a key role in helping our Committee reach its decisions."
The SMC has accepted hydrocortisone granules for restricted use for the replacement therapy of adrenal insufficiency. This acceptance is limited to use in infants and young children aged from birth to less than six years old, where the only options to get the right dose are to break up and crush hydrocortisone tablets, produce special solutions or to use hydrocortisone buccal tablets (that dissolve when held between the gum and the cheek) that are not licensed (approved) for treating adrenal insufficiency.
The SMC have published the explanation for their decision, which is available for download from our website here : Decision explained hydrocortisone final.pdf.
Further details are available here : https://www.scottishmedicines.org.uk/medicines-advice/hydrocortisone-alkindi-fullsub-smc2088/
Everyone with Addison's – or steroid-dependence from any cause – should be prescribed an emergency injection kit in case of adrenal crisis. Within the UK, these are usually prescribed by the GP, although some specialist hospital centres issue both injection kits and prescription injection drugs to their adrenal patients.
Hydrocortisone injection drugs are only available via prescription from your doctor. They are prescribed as either:
Hydrocortisone sodium phosphate 100mg (liquid hydrocortisone in a 1ml ampoule)
Hydrocortisone sodium succinate 100mg (powdered Solu-Cortef plus 2ml water vial)
It is advisable to request a prescription for 3 - 5 vials injectable hydrocortisone in case of breakages. You will also need intramuscular needles (blue, IM) and 2mL syringes; alternatively, safety syringes are available from our online shop. Please note, these drugs do have a shelf life and it is important you regularly check the 'best before' date on any medication provided. If this date is due to pass, you can request a new prescription from your doctor for this medication.
Note that hydrocortisone acetate (Cortistab) suspension must be avoided for use in cases of adrenal crisis. It has a delayed onset so is ineffective for emergency treatment.
Emergency injections: tips and reminders
Sources: Managing your Addison's Caring for the Addison's patient: information for GPs.
ADSHG emergency injection kits are available from our online shop
A range of emergency injection kits for both adults and children is available from our online shop and comprise:
Sturdy plastic boxes containing safety syringes, amp snaps and photo instructions
Available in adult and neonate (paediatric) sizes
Do not contain prescription injection drugs, which must be prescribed by your GP or endocrinologist.
You can purchase emergency injection kits (minus the drug preparations) from our online shop.
Join Invicta for their first concert of Music for Advent and Christmas. The concert is in support of the Addison's Disease Self-Help Group and will feature traditional Christmas carols alongside some stunning choral works for the Advent season.
The concert will be followed by mulled wine and a mince pie - included in the ticket price. To order tickets online click here...
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.