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    Membership of the ADSHG is open to anyone with Addison's or other forms of adrenal insufficiency that result in steroid dependence, family members, friends or anyone with an interest adrenal medicine.

     

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Addison’s disease (hypoadrenalism or adrenal insufficiency) is a rare condition where the adrenal glands cease to function and replacement medication is required.

    ADSHG

    As previously indicated to members online and in the newsletter, the Special General Meeting of the Addison’s Disease Self-Help Group (ADSHG) will be held on Sunday 18 November 2018 at 6pm at the Premier Inn, George Square, Glasgow.

    Agenda and Background
    There will be only one item on the agenda for the SGM, to agree that the activities and assets of ADSHG be transferred to a Charitable Incorporated Organisation (CIO) and that the original ADSHG charity then be dissolved and removed from the Register of Charities.  
     
    The conversion to a CIO has been a part of the ADSHG strategy for some time and the Trustees have unanimously confirmed it is in the interests of ADSHG to take this step for the following reasons:
     
    The CIO model has now been fully established and rolled out by the Charity Commission  A CIO is a more appropriate structure than at present for donations and grants by sponsors and is more flexible and lower cost than the alternative of becoming a limited company Incorporation offers greater financial protection for the members and Trustees of ADSHG Conversion allows ADSHG the opportunity to bring our constitution up-to-date and in line with best practice recommended by the Charity Commission, whilst allowing ADSHG to continue all current activities and to meet our existing purpose as a charity  
    The Charity Commission has registered our new CIO as a charity (Registered Charity Number 1179825), with the same name and object as our current charity (Registered Charity Number 1106791), namely to promote the relief of persons with Addison’s disease, in particular by the provision of support, information and communication for such persons, their families and carers and by such charitable means as the Trustees determine. The new CIO constitution follows the model recommended and registered by the Charity Commission and is available on the ADSHG website through the link below.
     
    Following an introduction and discussion, members will vote on the following resolution.
     
    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.
     
    Notes
    Members who are unable to attend the SGM but would like to vote on this resolution may do so online here.
     
    The full details of the SGM and the medical seminar on 18 November are available online here.
     
    The CIO constitution is available on the ADSHG website.

    ADSHG

    The Trustees of Addison’s Disease Self-Help Group (ADSHG) are delighted to announce the appointment of the charity’s new Chief Executive, Neil McClements, following a rigorous, open recruitment process. 

    Over 100 applications were received after the role was advertised both on our website and on CharityJobs.co.uk, the UK’s largest specialist website for the charity sector. After several rounds of interviews, four experienced, high-calibre candidates were shortlisted. Each candidate was invited to present their understanding of ADSHG and vision for the charity to the trustees. Our ultimate selection gives us confidence that ADSHG will be in excellent hands going forward.
     
    Neil brings over 25 years’ experience establishing and growing high-impact organisations. Over the past few years, he has become increasingly involved in the charity sector, both as a volunteer, fund-raiser and as a trustee for Haemochromatosis UK & the British Liver Trust. Neil is an Advisor to NHS England’s Primary Care Digital Transformation Clinical Advisory Group, which supports the safe and effective implementation of new practice and clinical and business processes in primary care, enabled and supported by digital tools to maximise the benefit for patients, clinicians and the public.
     
    Recently, as a result of an initiative led by Neil, Haemochromatosis UK was awarded a national Patient Safety Learning award for “engaging patients and their families in safety improvement initiatives”. This patient-led project brought together volunteers with NHS clinicians and partners across the UK, including the Royal College of Nursing and University of Derby, to improve the treatment and clinical protocols for people with cancer, myeloproliferative diseases and rare genetic disorders, such as haemochromatosis. Building on this success, the project has been shortlisted as a finalist in the AbbVie Better Health Awards, due to be presented at the Houses of Parliament in November.
     
    Through this initiative Neil has sharpened his keen understanding of the NHS and has developed a wide network across both the medical fraternity and healthcare policymakers and influencers. These aspects will be of great benefit to ADSHG as Neil works with the Trustees to grow the charity. Along with the Trustees, Neil greatly respects Deana Kenward's legacy and will be dedicated to preserving the friendly and caring ethos of ADSHG whilst growing and developing it so that we can help more and more people affected by Addison’s disease. 
     
    Commenting on the announcement, Neil added - “As someone who's seen a close family member live day-to-day with Addison’s, I’m excited to collaborate with everyone as we open a new chapter for ADSHG, building upon Deana Kenward’s legacy and the dedication, hard work, commitment and resourcefulness of ADSHG’s volunteers.”

    ADSHG

    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...

    ADSHG

    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.
     
     
    Join the ADSHG.

    ADSHG

    The Scottish Medicines Consortium has approved Alkini (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/
     

    ADSHG

    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.
     
     
    ADSHG adult emergency injection kit - large case

    ADSHG

    Autumn is here already and it’s time to stock up on Christmas cards and awareness goods ahead of the Christmas season. Special offers this year include the alpaca beanie hat, baseball cap as well as special offer combination packs of the cotton shopper, plastic pen and sticky notes.

    For 2018, the ADSHG has our fabulous Christmas awareness gift, the Addison’s cookery book compiled by our late Trustee Sue Chambers. Not only a lasting legacy from Sue, but packed full of delicious recipes that have attracted many positive reviews.
     
    Special offers are available on some awareness goods this year:
    a soft, warm beanie hat in alpaca wool, with a nylon mix for durability, in ADSHG logo colours. a quality cotton baseball cap with embroidered logo at front, web address at back and long visor combination pack of Cotton shopper + Plastic ball pen + Sticky notes + Trolley token key ring combination pack of Cotton shopper + Plastic ball pen + Sticky notes
    double up with the two pack version of the Christmas greetings gift wrap  
    There is a fixed post and packing charge per order which is £4.45 for UK orders, £9.75 for the EU and Ireland, and £12.95 for the rest of world. So the more you order the better!
     
    Visit our online shop at www.addisons.org.uk/shop
     
    Happy shopping!

    ADSHG

    The ADSHG is holding a Special General Meeting (SGM) on Sunday 18th November, covering our move to Charitable Incorporated Organisation (CIO) status and to vote in a new constitution. It will be followed by a Q&A session by Professor Eystein Husebye, head of the Department of Endocrinology at the University of Bergen. Tickets are available in the online Shop.

    Notice of Special General Meeting
    The notice of meeting can be found in the separate Notice of Special General Meeting article on the website.
     
    Why are we having an SGM?
    The primary purpose of the SGM is to allow our members to vote on moving ADSHG to Charitable Incorporated Organisation (CIO) status and to vote in a new constitution.
     
    Why do we want to move to CIO status?
    As our charity grows and seeks to provide support to more and more people in the Addison’s community, we have determined that ADSHG and therefore our members will benefit from us moving to CIO status. This means that we continue to be registered with the Charity Commission. We will continue to have a registered charity  number, allowing us to fundraise and providing the public with confidence that the charity is appropriately regulated.
     
    Why a new constitution?
    The constitution is effectively the ‘rule book’ of our charity and ensures ADSHG is run properly for the benefit of the members. Our current one is nearly ten years old and is no longer in line with Charities Commission best practice, hence we need to update it.
     
    Where and when?
    The SGM will begin at 6pm on Sunday 18th November 2018 at the Premier Inn, George Square, Glasgow. Details are in the members’ calendar and seat reservations are available through the ADSHG online Shop here...
     
    Online vote
    If you would like to vote on the new constitution and our CIO status, but can’t attend in person in Glasgow, a link will be sent out in an alert. In the meantime, you can see the new proposed new ADSHG constitution here...
     
    What is the medical seminar about?
    Following the SGM, Professor Eystein Husebye from Bergen, Norway, will provide a presentation on recent information of interest to the Addison’s community after which he will take questions. Eystein Husebye is Professor and Head of the Dept. of Endocrinology at the University of Bergen and Haukeland University Hospital, in Norway. He did a PhD and specialized training in internal medicine and endocrinology at Uppsala University Hospital in Sweden. Professor Husebye was the lead coordinator for the EU-funded EURADRENAL consortium bringing together endocrinologists across 12 European centres from 2008-2012 to perform clinically relevant research in Addison’s disease. He is the president of the Norwegian Endocrine Society and has published more than 150 papers, mainly about Addison’s disease. Professor Husebye is providing a keynote address to the British Endocrine Society conference the following day.

    ADSHG

    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...
     

     
    To order tickets online click here...

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. 1106791.

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