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Issue 104 June 2011

The Addison’s Disease Self-Help Group works to support people with adrenal failure and to promote better medical understanding of this rare condition.Registered charity 1106791

www.addisons.org.ukNewsletter 104/June 2011

Being preparedWelcome to the summer 2011 newsletter, which is packed full of news. The new dual release hydrocortisone being developed by DuoCort is now becoming available in the UK - at a price - as Jane Hodgkin explains on page 3. Medication costs and access to our essential steroid medication also feature on page 4, where we reprint the ADSHG’s recent letter to the British Medical Journal about prescription costs.

The ADSHG’s activities in medical awareness-raising are reported on pages 5 and 6, where Alison Mainwaring describes how she represented us at a nursing forum and we report on the annual British Endocrine Societies’ conference in Birmingham.

Our scientific poster presentation at the BES conference is republished on pages 6 - 7, followed by a media release from the European Congress of Endocrinology about recent research into adrenal emergencies. The speaker at our forthcoming medical lecture on Saturday 11 June, Dr Stefanie Hahner, was the lead researcher featured in this media release. Dr Hahner’s research emphasized the need for more thorough patient education in emergency prevention and for everyone to have an own injection for home use. Reinforcing her findings, GPs’ lack of familiarity with the risks of adrenal crisis was a core theme from our BES presentation.

Being prepared for adrenal emergencies is also a theme in the personal accounts of Pippa Sharman and Bob Beer on pages 9 - 10, as they describe their experiences of keeling over in a university lecture and at the dentist. On page 11, trustee Phil Stevens outlines his recent work in building closer links with ambulance trusts and encourages us all to register with our local ambulance service so they have our home address and details of our treatment needs on their computer database.

All’s well that ends well, as Deana Kenward describes in her page 2 report on her recent hip replacement surgery and the frustrations of her lengthy recuperation. Deana and her fellow trustees hope to see as many of you as possible in London on 11 June, for our AGM and medical lecture, at what promises to be a most interested afternoon. The ADSHG trustees

Medical recognition of our website

In thIs IssueFrom the President/p2

New bones for old

Recent drug news/p3Dual release hydrocortisone

28-day prescribing in the news

Recent news/p5Royal College of Nursing seeks

our inputBES endocrine conference

Recent medical research/p6

GP survey findings at BES European Congress of

Endocrinology highlights adrenal emergencies

Immunodeficiency study at Oxford

Personal experiences/p9This student life

Real life emergencies/p10Blues and twos from the dentist

Phil’s bit: ambulance alerts

home and away/p12Travelling light

Lemon tea cake

Around the group/p13Website upgradeJan’s social corner

Ian’s fundraising reportMembers’ donations

The Alfred Potter memorial research award

notices/p15Meetings and subscriptions

the back page/p16Reminders

With this issueThe agenda and proxy voting form for the ADSHG’s annual general meeting are enclosed with this issue. We have taken advice from our independent examiner, John Speed, and are revising the format of our AGM and annual report to members, which will be issued later this year. We are switching to an accruals basis for our 2010 accounts and have hired an external book-keeper to manage the transition. The final accounts for 2009 and 2010, as approved by our independent examiner, will be included with the annual report. As in previous years, an overview of our finances for 2010 will be presented at the annual general meeting for questions and discussion. Members will no longer be required to pass a formal vote of confidence in the accounts at the AGM; this formal vote becomes the responsibility of the trustees, after which the accounts are examined and approved by the independent examiner, before being submitted to the Charity Commission in October each year. the ADshG trustees

The NHS maintains a large database of clinical protocols for medical professionals, that is also open to the public. Clinical Knowledge Summaries (CKS) is an open access website that has been funded by NICE. It contains useful guidance about the diagnosis and management of Addison’s. The medical leaflets authored by our Clinical Advisory Panel, as published on our ADSHG website, form some of the core references used on CKS, especially the surgical guidelines and the emergency treatment guidelines. http://www.cks.nhs.uk/addisons_disease/view_whole_topic

This is a pleasing endorsement of the work of our Clinical Advisory Panel, who

have jointly authored all our literature. It is very encouraging to see their shared adrenal expertise being recognized within the wider medical profession.

Please bring the CKS website to the attention of your GP. Our GP leaflet, Caring for the Addison’s patient, is used as a reference on CKS; much of its content is reproduced on the website as guidance for primary care practitioners.

Regrettably, government restructuring of the NHS and the reduced role of NICE mean that the CKS website is no longer being updated. The NHS is currently tendering for a replacement service, to be called NHS Evidence. Stand by for further details. nick Willson

2 New boNes for oldI am now the owner of a brand new hip and - more surprisingly - still sane after weeks of sitting round in recovery.

I had suffered hip and leg pains for over two years

before I went to see my doctor in December 2010. He ordered x-rays. On their return, he told me I would need both my hips replaced sooner rather than later. I did tell him he must have someone else’s results, but alas, I was wrong.

I was wheeled in for my anaesthetic at 1.30pm on 2 March; the cannula went in at the second attempt and the sticky pads for the heart monitor were applied. Then I had a spinal block (cold spray and three needles). I was put on oxygen, because my blood pressure was getting lower and I was quite stressed by this time. They waited until I was in theatre before giving me the hydrocortisone.

I came round in recovery and I was shaking with cold. I was put on oxygen and wrapped in an electric blanket. It was almost an hour before they sent me up to the ward because my blood pressure was so low. It stayed that way all the time I was in the hospital.

I had another hydrocortisone injection that night, but when the drugs came round in the morning I refused to have anymore because the extra steroids had caused my hands to swell. I knew the swelling would spread and get worse, as this has happened before. I had the ward sister, the doctor and the pharmacist round my bed; they eventually agreed to let me self-medicate my steroids with double doses.

The physiotherapists were there in the morning, so that I was walking with a zimmer frame by ten o’clock and on crutches the next day, although my blood pressure was still so low I could not stay upright for long without nearly passing out. They decided I would benefit from a blood transfusion. When the nurse came in and said she had a unit of red for me I asked to make sure it was a good claret. Sadly, they had run out.

I came home just three days after the operation - which I really think is too soon - but this in normal these days. My stitches, or in this case it was just one running stitch, came out two weeks later and I did not feel a thing. After three weeks I could manage indoors with just the one crutch. By the next week, I was able to get around without any walking aids at all, although I still used one if I went out of the house.

The worse thing for me was having to sleep on my back as it gives me such awful backache. This meant more tablets to ease this pain; it was lucky I could not run, because I know I would have rattled with all the medication I was taking.

When I went for my six week check-up I was anticipating that the doctor would tell me I could now do lots things I had not been allowed to do for fear of dislocating my new hip. How wrong I was! I can now shower but am not

from the pReSIDenT

allowed a bath for another six weeks. I must still sleep on my back and am not allowed to sit on the sofa or soft chairs for the same time. I can’t drive for another three weeks because I have to parallel park in my road. I am not allowed to twist from the waist. I came out of from my check-up feeling very sorry for myself - well someone had to.

I have an eight and half inch scar now, which has healed up perfectly. However, the bruising was a sight to behold. I have never seen such a variety of colours. It took five weeks to travel right down to my toes and after six weeks there was still some bruising around the scar.

I do not have to have the other hip done until it causes me greater pain, which at the moment it is not too bad. I hope it stays that way for a long time as I do not want to go through this again for years. The actual operation was a doddle compared to the recovery. I have not been dependent on anyone since I was a baby and I found it so hard having to rely on my son, Daniel, who has been a diamond, plus friends and neighbours. I needed for help with almost everything for the first two weeks then obviously it got easier as I could do more for myself.

I can honestly say that I never experienced any pain from the actual operation; it was just aching and pulling around the wound that I felt. I know I will feel the full benefit in a few months time and will be glad that I had it done - but for someone who is always active and hates sitting around, I found it so frustrating. I did jigsaw puzzles and crosswords, read magazines and books, watched television and put on weight from lack of exercise. At the end of the day, of course, it was worth it to have a pain-free hip. I have to go back for a final check-up in August so I will let you know how I am doing then. Watch this space.

Post script: Since I wrote this, I am back driving again and am able to take a regular walk to the post box at the end of my street to send out our runners’ sports vests and new joiners’ packs. A big thank you to everyone who sent me a get well card, also for the birthday cards I received at the end of April. What lovely people you are. So now I am almost back to normal - whatever that was! Do take care and keep taking those tabletsKind regards

Deana’s contact details: [email protected], FReepOST RSeX-XRYe-UeGU,pO Box 1083, Guildford GU1 7HX

YouR ADshG neeDs You!The ADSHG is run by and for people with Addison’s. This means we are constantly looking for people with skills and enthusiasm to keep us going. Please get in touch with the trustees if you could contribute a few hours a month in any of the following areas: book-keeping, accountancy, database management, IT software support, newsletter editing, writing or proof-reading. Please email: [email protected]

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reCeNt DRUG neWSDual release hydrocortisone now available in the UKFrom early June 2011 it will be possible to ask GPs to prescribe the new dual-release hydrocortisone tablet, thanks to an agreement between Swedish pharma company DuoCort Pharma and UK-based Clinigen, which provides specialist and unlicensed medicines worldwide. Clinigen will manage a Named Patient Programme for this new treatment.

The product, now known by its newly-trademarked name Plenadren, is in the later stages of clinical trials. Results so far are promising, as we reported in the October 2009 newsletter. However, until the regulatory process is complete, Plenadren remains an unlicensed medication not listed by the NHS for normal prescription. This is where the Named Patient Programme - to be managed for DuoCort in the UK by Clinigen - can make a difference.

Named Patient Programme This allows individual patients to receive unlicensed medications where there is an unmet medical need. In an article for Oncology News, Siobhan Andrews, a specialist Clinical Oncology/ Haematology Pharmacist at North Middlesex Hospital, writes:

“The supply of unlicensed medicines on a ‘named patient basis’ is a widely used practice in the UK, particularly in the area of oncology, where research and development of new agents become available faster than the regulatory process for medicines can approve them.”

“The definition of ‘an individual patient’ is becoming a grey area, as agents such as thalidomide for multiple myeloma are becoming standard treatment options

despite the product currently not having a licence for this indication.”

In the UK the process for this provision is governed by the MHRA (Medicines and Healthcare Regulatory Agency), which is responsible for ensuring the safe supply of medicines to patients. Clinigen has already completed the necessary regulatory processes with the MHRA for Plenadren.

Advantages of Plenadren?Plenadren is taken only once a day, on waking. Each tablet combines a rapid release dose and an extended release dose, so that the cortisol level in the blood increases rapidly to a maximum level about 1 hour after taking the tablet, then gradually decreases over the day with no cortisol, or almost none, in the blood in the late evening and night when the levels should be low.

It’s designed to avoid the peaks and troughs of taking two or three separate doses and to more closely mimic physiological cortisol release.

For anyone who is lactose-intolerant, the fact that these tablets are lactose-free would be an advantage. People with diabetes and Addison’s may find that the more sustained release of Plenadren helps with their blood sugar control.

Marie Hedman was one of the Swedish participants in the early trials of the new treatment. She commented on how she responded to Plenadren (then known simply as DuoCort):

“DuoCort does sustain me for the whole day, and I am not as tired in the evenings as I could be with the old medication. Also, I don’t get that afternoon dip I often got before the second pill of the day started to work.

“I have also noticed that I tend to not need as much extra medication as I did before. Of course, you don’t get the same amount immediately as you would with the old pills, but I haven’t noticed that it is less effective. It seems to me, though, that all Addison patients are different, so I can’t say whether DuoCort would be the best for everyone.”

How to obtain Plenadren?So, supposing you feel that this form of hydrocortisone might be helpful for you, how would you go about getting it? The first thing to do is to discuss your needs with your GP and/or endocrinologist. If they agree that Plenadren would meet a clinical need for you, the GP may then have to get specific Primary Care Trust approval. Clinigen would then supply Plenadren, on behalf of DuoCort, in response to the prescription.

As reported in previous newsletters, the unlicensed French fludrocortisone, Adixon, is available on a similar basis in the UK. When ADSHG member Lesley Kay wanted a small quantity of Adixon for travel purposes, the PCT had to approve it in advance. This meant there was a certain amount of to-ing and fro-ing, but once she had the prescription it wasn’t hard to order through the chemist.

Experience of thyroid patientsIt might also be helpful to draw on the experience of patients with a thyroid condition who wish to be prescribed unlicensed natural thyroid hormone on a named patient basis. A page on the website thyroid.org.UK details the process:

“If your doctor is willing to give you a prescription for a brand of natural thyroid hormone, you should be able to take it

to any High Street pharmacy such as Boots, Lloyds etc. any supermarket pharmacy or local independent pharmacy. Some wholesalers ask for a letter of clinical need.”Jane hodgkin

Plenadren facts20mg and 5mg tablets, in bottles of 50.

Price: initially, £6.32 per 20mg tablet and £1.58 per 5mg tablet at current rates of exchange. These prices are expected to come down when it moves into commercial production as a licensed medicine.

The current price of Auden Mckenzie’s 10mg hydrocortisone tablets is £1.43 per tablet, while a 2.5mg Corlan tablet costs 20 pence.

Plenadren excipients are:n Hypromellosen Cellulose, microcrystallinen Pregelatinised starch (maize)n Silica colloidal anhydrousn Magnesium stearaten Macrogoln Polyvinyl alcoholn Talc

Clinicians and pharmacists wishing to access Plenadren may contact Clinigen: T: +44 (0) 1283 494340F: +44 (0) 1283 494341E: [email protected] (This e-mail address is being protected from spam bots, you need JavaScript enabled to view it)DuoCort: www.duocort.com

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The pot of

gold at the end of the rainbow?

28-day prescribing in the newsSome PCTs are again attempting to enforce a blanket restriction of 28 days on all repeat prescriptions as a cost-saving measure, the British Medical Journal reported recently. In response, the Department of Health and the British Medical Association have advised that GPs should continue to issue their patients with repeat prescriptions that are tailored to the clinical needs of the individual patient.

Dr Beeby, Chair of the British Medical Association’s clinical and prescribing GP sub-committee, commented:

”I can understand why practices are complying with PCTs because they’re under considerable pressure to do so. But if patients are fully compliant with taking their medication and it is regularly taken and regularly needed then it saves absolutely no money.”

“For some people, it might be appropriate, for others not. Doctors should not feel pressurised into following this. It is down to individual GPs to decide.”

The ADSHG’s clinical advisory panel advises that people with Addison’s should be issued with three to six month repeat prescriptions for their essential steroid medication and should always retain a reserve supply of two months steroid medication, in case of unexpected supply problems.

The Society for Endocrinology also advises that patients on replacement steroid medication should receive longer repeat prescriptions lengths.

Right, we reprint our Rapid Response to the BMJ about 28 day repeat prescribing.

Patients hoarding unused medicines is an attractive target for PCT cost savings in the current economic climate. Rationing patients’ access to drugs by restricting repeat prescriptions to 28-days supply also signals to GPs that they must be frugal in their prescribing habits.

Sadly, PCTs are chasing a mythical pot of gold at the end of the rainbow with this kind of thinking. A number of studies have shown that the extra processing costs on short repeats more than outweigh the cost of the unconsumed drugs foregone by patients, for repeat prescribing lengths of less than 84 - 100 days.

The Department of Health’s recent independent report on waste medicines concluded that avoidable medicines waste in England has a likely value of less than GBP150 million a year, or less than 1.9% of English spending on primary and community care medicines - substantially less than the likely additional prescribing cost from shorter repeats.

The Waste Medicine report’s finding that 28-day repeat prescribing drives up supply side costs reinforces the point made by another recent analysis of UK medicines wastage. This found that pharmacy costs now make up around one-third of the cost of most prescription items, which are dispensed as generics with an average net ingredient cost of around £3.83. This study identified that if all 842.5 million prescriptions issued by the NHS in England in 2008 had been 28-day repeat-dispensing items, it would have added a projected £700 million to the actual pharmacy costs of around £1.5 billion, to reach a total of £2.2 billion on pharmacy costs.

Earlier studies in New Zealand and the United States came to similar conclusions: there are more additional supply costs than there are savings from rationing patients’ access to long-term medications.

No one seems to have advised PCTs of this and many are reportedly continuing to promote 28-day repeat prescribing as a cost-saving measure. To try and capture £150 million of avoidable medicines waste, PCT managers are potentially committing the NHS to an additional £700 million in pharmacy supply costs. There is, in reality, no pot of gold at the end of the rainbow.

Preventing such an escalation of pharmacy supply costs will need urgent, co-ordinated action. The Department of Health and Pharmaceutical Services Negotiating Committee will need to work jointly to introduce greater flexibility in the prescription lengths available through the repeat dispensing scheme, with extended prescription lengths of 2 - 6 months being made available for suitable therapeutic regimes. PCTs and GPs will need to be more explicit with patients about the actual cost of generic and branded drugs, so that they are able to act responsibly in managing their home supplies of long-term medications without either over- stocking or running out.

Rationing drugs through a blanket 28-day repeat prescription length contributes to significant health losses among patients who depend on long -term therapies to control endocrine, cardiovascular, mental health or other conditions. The risks to patient safety from restricted access to essential medication are particularly severe for steroid-dependent Addison’s patients, who have been know to die less than five days after running out of their steroid medication.

The Waste Medicines report concluded that lost therapeutic outcomes significantly outweighed the value of material losses associated with wasted medicines for all the long-term conditions it analysed. As the authors advised: “In the context of residual medicines there is a danger that a ‘zero tolerance’ approach could undermine awareness that the core purpose of healthcare is to increase as cost-effectively as possible health and wellbeing, rather than to make savings to standalone budgets like those for community pharmacy and/or primary care pharmaceuticals.”

Yours sincerely,Professor John Wass, Chair, Addison’s Clinical Advisory Panel and Katherine White, Chair, Addison’s Disease Self-Help GroupFurther information:n http://www.bbc.co.uk/news/business-13016936n http://www.endocrinology.org/press/pressreleases/2009-08-11_Hydrocortisone and swine flu.pdfn http://www.bmj.com/content/342/bmj.d2410.extract/reply#bmj_el_257136n http://www.addisons.org.uk/topics/2010/06/0021.htmln http://www.addisons.org.uk/comms/publications/gpaddisonsleaflet.pdf

reCeNt DRUG neWS

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In March, the Royal College of Nursing invited the ADSHG to send a representative to its London forum on the role of specialist nurses. Group member Alison Mainwaring responded to our forum request for a volunteer and went along on our behalf. Here she reports on the morning’s events.

On 21 March I flew the Addison’s flag at the Royal College of Nursing Patients’ Forum, held at the very grand Royal Society of Medicine in London’s Wimpole Street. This forum was to establish patients’ views about the care they receive from nurse specialists and nurse consultants. Via a lively discussion and the completion of a questionnaire, I endeavoured to portray the main challenges we all face, both as in-patients or emergency cases, and as newly-diagnosed patients trying to cope with a diagnosis and absorb the information we need to keep ourselves healthy. In round-the-table debate we all had to take our turn and not dominate, but the questionnaire gave an opportunity to add extra detail.

The attendees were split over three large tables, each with a facilitator from the Royal College of Nursing. The people at our table had a wide range of conditions and roles. Two had prostate cancer, one Parkinson’s, one sickle cell anaemia, one was a carer for someone with a range of physical disabilities and also had problems with pain and depression, while the last person worked with people who had mild mental impairment, who couldn’t take medication independently. This man had also recently gone to A & E, after his GP diagnosed his breathlessness as a product of his size - but was found by A & E to have suffered a pulmonary embolism. As you might imagine, he had lots to say.

I tried to cover the following points in my responses:n The small numbers diagnosed with Addison’s in the UK and its rarity against, for example, diabetes.n Our acute dependency on steroids and the speed with which a patient’s condition can decline.n Incidents reported by our members on the forum, where A & E staff have been ignorant of our condition, both at triage and beyond.

It was an early rendezvous at Euston Station for Jan and Noel, who unpacked our boxes and pinned up the posters to set out our display stall at the annual British Endocrine Societies’ conference in April. Over 1000 delegates from Britain - with a scattering from as far afield as South Africa and Argentina - were gathered at the conference centre. Quite a few strolled past our display and sampled our literature.

The ADSHG stall looked more striking than usual with our new custom-designed table cloth featuring our logo and website address. Everyone staffing our stall looked distinctive with a custom-printed sticky label featuring our logo and the slogan I have Addison’s: ask me a question.

Quite a few people approached us wanting various types of information. The ADSHG’s new educational leaflet, What is Addison’s? was well received. We also displayed the Society for Endocrinology’s new leaflet on diagnosing adrenal insufficiency; the medics were keen to take copies of both.

One A&E consultant was particularly interested in the emergency guidelines. He took various handouts with him and we suggested he get in touch through the website.

Sue and Dick showed most stand visitors the “concertina” laminated card and everyone was very impressed. It was recently useful for them during a tummy bug. Sue injected her emergency hydrocortisone and Dick them took her to A & E. He handed over the card, which they photocopied and followed the procedure as explained. Everything was then plain sailing and Sue was discharged about eight hours later. sue and Dick Willans, Jan Dryden, noel hawks, Katherine White The ADSHG’s poster presentation from the BES conference is published overleaf.

We need volunteers to help staff our information stall at the Society for Endocrinology’s autumn conferences, being held in Stratford-upon-Avon from 19 - 20 September and Sheffield from 7 - 11 November. If you can spare a few hours between 10am and 4pm to keep our displays tidy and chat to interested medics about our work, please contact Noel Hawks. Phone: 020 8778 9619, email, [email protected]

n The usefulness of group education in sick day rules and emergency prevention.n The importance of post-diagnosis support and education “beyond the numbers” from our endocrine consultant.n The need for better education of ward nurses so patients are getting their medication at the right times.n The need for general medical education about the surgical guidelines and emergency treatment instructions.n GP’s lack of in-depth knowledge or experience, so that support from specialist nurses could perhaps prevent unnecessary calls to the consultant.n ADSHG research showing how social background influences quality life for patients.n Our 24 page ADSHG owner’s manual, which was a clear demonstration that the patient has to bone up themselves (which not everyone is capable of, or confident in doing).n Our recognition and appreciation of the specialist nurses that ADSHG members have come across.

I concluded by stating that if economics was an issue, then better nursing education could keep the hospitalstay time of patients shorter, if their condition was understood from the outset and handled correctly so that they were able to recover more quickly.

Our RCN facilitator did remark that she thought that there needed to be a “roots upwards” education for nursesregarding Addison’s, so I hope that makes it into her report.

It was a very interesting experience andI feel it always does one good to hear other people’s stories.Alison Mainwaring

Alison was diagnosed in 2009. She is a qualified solicitor but has not practiced since

the birth of her, now teenage, sons. Alison lives in Surrey and works part time for Laura Ashley as a Store Administrator.

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ADshG survey results presented at

Bes 2011The findings from the

ADSHG’s GP survey were accepted onto the scientific

programme at the British Endocrine Societies’

2011 conference, held in Birmingham in April. Here

we republish our poster presentation.

In early 2010, the Addison’s Disease Self-Help Group sent an information pack to 10,500 GP practices across the UK, outlining the GP’s role in diagnosis and care of the Addison’s patient. We asked the practice head to return a reply-paid questionnaire, detailing the number of steroid-dependent patients in the practice, their repeat prescription length, if they had an in-date supply of injectable hydrocortisone, and any comments on the challenges they faced in providing care for their steroid-dependent patients.

Predictably, only a tiny proportion of GP practices sent a reply (N = 22), so that their responses do not offer statistical validity. Nevertheless, this small sample offers some qualitative insights.The 22 GP practices that replied contained an average of 4.4 GPs, 6700 patients and 1.7 Addison’s patients. This is only a slightly higher proportion than epidemiological research would have suggested (Lovas and Husebye 2002).

33% of practices with steroid-dependent patients (N = 18) reported that they were on 28-day repeat prescriptions. Only 3 of these practices were able to confirm that their patients had an in-date supply of injectable hydrocortisone.

Several GPs stated that prevention and management of adrenal crisis was their biggest challenge, as neither practice staff nor their adrenal patients had a good understanding of what this entailed. Others said they had insufficient experience to offer guidance to the patient on what to do if they became unwell and relied on patients to “self-care”. One respondent commented that he had yet to see an adrenal patient after 30 years as a GP, and would rely on secondary care to provide the follow-up and patient education required.

This small survey reinforces the importance of the endocrinologist’s role in providing patient education for the prevention and management of adrenal crisis. Katherine White and Alick Mackay

Gps say they rely on endocrinologists to manage adrenal crisis and patient education for Addison’s disease…

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forum fEEDback I attend the clinic at Royal Berkshire hospital, where there is a specialist endocrine nurse who covers Addison’s as well as other endocrine diseases. When I was first diagnosed, I had invaluable help and support from Sarah. I see this role as a very important part of the endocrine team. I’m sure being able to get my concerns answered promptly has prevented me from unnecessary re-admissions to hospital. As well as providing support to patients, I see a key role for the specialist endocrine nurse in educating general nursing and medical colleagues. That way, the miserable and ignorant treatment that some have experienced in A&E and other parts of the hospital could become a thing of the past.Kate Castegna

Addison’s featured prominently at the european Congress of endocrinology (eCe) in Rotterdam in early May. Recent research into adrenal emergencies was chosen as the lead item in the eCe media release about the conference. the speaker at our ADshG medical lecture, Dr stefanie hahner, was the author of one of the main pieces of research publicised by the eCe. Dr hahner will be sharing the findings from her research with us on 11 June this year; details are in the notices on page 15. Below, we reproduce the eCe media release about her work.

GReAteR AWAReness neeDeD on RIsKs thAt ADDIson’s Poses to PAtIentsTwo new studies presented at the European Congress of Endocrinology in Rotterdam show the possible dangers facing patients with Addison’s are higher than previously thought. The new research shows that Addison’s patients, who have low levels of cortisol produced by the adrenal glands, are more likely to get infections which may provoke life-threatening adrenal crises.Addison’s disease is caused by low levels of the hormone cortisol, produced by the adrenal glands. Without treatment, the condition can be fatal. Patients with Addison’s can suffer a range of symptoms, including dizziness, weight loss, muscle weakness, mood changes and the darkening of regions of the skin if they don’t receive treatment. The most famous Addison’s patient was John F Kennedy, but it is a comparatively rare condition, affecting about 1 person in 15,000.

She identified 390 Addison’s patients from pharmacy records and compared the risk of infections and hospital admissions. Dr Smans found that the risk of infectious disease was 1.5 times that of a control population, (overall incidence rate of 59.2/100 person-years). In addition, Addison’s patients were significantly more likely to be hospitalised for infectious disease than control groups (3.8/100 person years for Addison’s patients, versus 0.8/100 person years for control groups).

Researcher Dr Lisanne Smans commented:“We need to raise awareness amongst doctors and patients of the risk of infections in Addison’s patients compared to the general population. We now want to move on to see whether influenza vaccinations can help this patient group.”

Commenting on the two papers, Professor Peter Trainer, Chair of the European Congress of Endocrinology Programme Organising Committee, said:“These studies reinforce our knowledge of the risks that infections pose to patients with Addison’s disease and serious consequences that can arise. We need to look at ways of making both the medical community and patients more aware of the appropriate medical action needed to treat an adrenal crisis. This really is a case where quick action can save lives. All patients with Addison’s disease should carry an emergency kit containing a hydrocortisone injection that can be given immediately if they fall ill.”

The scientific abstracts for this research can be found at http://www.endocrine-abstracts.org/ea/0026/ea0026oc1.5.htm http://www.endocrine-abstracts.org/ea/0026/ea0026oc1.6.htm

BRITISH THYROID FOUnDATIOn: An InvITATIOn The ADSHG has an agreement with the British Thyroid Foundation that we can attend their regional meetings. Because thyroid conditions are much more common than Addison’s, BTF meetings are held in a number of locations around the UK, often with a speaker from one of the local hospitals. The same reciprocal arrangement means the ADSHG is inviting BTF members to attend our meetings, where they wish to find out more about Addison’s. The BTF asks for a voluntary donation at the door and ADSHG members are welcomed. To find out more about BTF meetings, please ring 01423 709 707 (office hours) or visit the BTF website at www.btf-thyroid.org

Dr Stefanie Hahner, working at University of Wurzburg, Germany, looked at the incidence of adrenal crisis in 472 German patients with Addison’s. An adrenal crisis is a potentially life-threatening condition which occurs when cortisol levels fall dangerously low, requiring an immediate injection of hydrocortisone. Dr Hahner found that 62 of the patients had an adrenal crisis over the two-year period of the prospective study, with almost two-thirds of those needing to be hospitalised and 9.5% being treated in intensive care. Two patients died from adrenal crises during the study. The study also found that many patients were unprepared to deal with the threat to life presented by crises and further patient education programmes may be warranted.

Researcher Dr Stefanie Hahner said:“The number of adrenal crises was higher than we expected from previous studies. Infectious disease provoked 39% of the crises, with psychological stress also causing problems. Ninety-five percent of the patients were aware of the dangers of an adrenal crisis, but only 28% had the emergency injection set. This shows that these crises are largely caused by infectious diseases and stress, but also that patients need to be better prepared to respond to the crises when they arise and that infectious disease has to be treated early and aggressively in this patient group.”

In another study presented at the European Congress of Endocrinology from the University of Utrecht, The Netherlands, Dr Lisanne Smans showed that patients with Addison’s were more at risk of suffering infections than the rest of the population.

addison’s highlighted at european endocrine conference

8 immunodeficiency study at oxfordThe ADSHG has awarded its inaugural medical research grant, the Alfred Potter memorial award, to Professor John Wass, to help with laboratory costs on a clinical study examining the immune response of Addison’s patients to vaccination. Here, his research team outline their work in progress.

We are running a one year, prospective observational cohort study to detect the immunological reaction to “recall” antigens and to “exogenous” antigens (vaccines) in patients with adrenal insufficiency.

Our study monitors how individuals respond to a pneumonia vaccine, as well as monitoring antibody levels to “recall” antigens such as tetanus toxoid, looking carefully for any factors associated with decreased immunocompetence. We are also comparing the immunology response of primary adrenal failure (Addison’s) with secondary (caused by pituitary or hypothalamus disease/surgery) and have recruited 19 patients into each arm of the study. Hopefully, our study findings could mean that a more detailed understanding of the immunological response in patients with adrenal insufficiency leads to better overall care for patients.

Patients receive a pneumococcal vaccine on their first visit. Before vaccination, we collect a blood sample for base-line laboratory analysis. On visit 2 (four weeks later) and visit 3 (six months later), we take further blood samples. One year later, therewill be a final visit or telephone call, to document episodes of infection over the year.

To date, all the participants have had visit 3 and we are aiming to complete the study by end of 2011. Additionally, through education during each visit, patients should benefit from an increased awareness of their condition, thereby assisting them to take steps in preventing future infections and improving their long term outlook.theingi Aung, Rachel Franklin, niki Karavitaki, John Wass – oxford Centre for Diabetes, endocrinology and Metabolism, the Churchill hospital, oxfordDetails of the ADSHG’s medical research grant can be found on page 14.

Pregnancy surveyHave you been pregnant since your Addison’s diagnosis? The medical adviser to the Australian Addison’s group, Professor David Torpy, is leading a team looking at the experiences of women with treated Addison’s during pregnancy and childbirth. They hope that all female ADSHG members with relevant experience will be willing to complete a web-based questionnaire. This takes about 15 minutes to fill in. To give your responses to this questionnaire, please go to http://www.pages.on.net/adq.php.

The study findings will be publicized in a future newsletter, once the research is complete.

Professor John Wass with his research team at the Churchill Hospital

Organ dOnatiOnThe Organ Donor Registry say there is no reason why someone with Addison’s should not put themselves forward for possible organ donation. Their concern is the health of the organ to be donated so the state of our adrenal glands is irrelevant. Jan Dryden

DRuG InFoRMAtIon lIstInGsFor a plain English description of drug effects, side effects and interactions, you might want to try www.drugs.com This is a US website which includes some bizarre advertisements for herbal remedies that are probably best avoided, but the website as a whole is well-written and easier to comprehend than the medical jargon on the BNF website.Jackie Berry-lawrence

Professor simon Pearce is still interested to obtain blood samples from group members with autoimmune Addison’s. These are being analysed for DNA components to try and identify the genetic

origins of autoimmune Addison’s. You need to ask your GP if they are willing to take the blood sample and send it to Professor Pearce. If your GP agrees to do so, Professor Pearce will post

you a short questionnaire and blood specimen bottle, with instructions. Please contact Simon Pearce on: E-mail: [email protected],Tel: 0191 241 8674

Post: Professor Simon HS PearceSenior Lecturer in EndocrinologyUniversity of NewcastleSchool of Clinical Medical SciencesMedical SchoolNewcastle upon Tyne, NE2 4HH

GeneTIc ReSeARcH: GIve BlOOD

FREE UK PRESCRIPTIONSIn the UK, patients with adrenal failure are entitled to receive all their NHS prescriptions exempted from the standard £7.30 prescription charge, although individuals must reapply for this every five years through their GP and receive an exemption certificate from the NHS Business Services Authority.

Applying for a Medical Exemption Certificate Your GP’s surgery has the application form for this; you have to request that your GP fills it in on your behalf. For information and advice, contact the NHS Business Services Authority:Phone: 0845 601 8076Website: www.nhsbsa.nhs.uk/1638.aspxPost: NHS Help With Health Costs,Medical Exemption,Newcastle upon Tyne NE2 1BF

9

this student life Contrary to popular assumption, being a student is no walk in the park. Add in the management of Addison’s - and it can seem a bit daunting. The student reputation is more typically similar to that of the sloth. We sleep, a lot; we drink, a lot; and the great majority do very little else. Attendance to lectures is only acceptable if they fall after 4pm and coursework is only completed in the early hours of the morning - fuelled by fear and Red-Bull. However, when living with an ‘invisible’ condition such as Addison’s, it is, actually, vital to consider how to somehow produce a degree to be proud of, balance our medication to maintain stability - as well as living the much-craved student lifestyle.My experiences of student and university life have shown me that this is possible with good support strategies. You may not need them, but if you do become ill they immediately become invaluable. It pays to be prepared. As student life can be rather ad hoc in nature, being organised and having support systems in place can make everything run much smoother. Here are my suggestions for how to make the most your time in higher education.

Apply for Disabled Student Allowance (DSA)The DSA are grants to help meet the extra study costs students can face as a direct result of a disability, which includes an ongoing health condition like Addison’s. They help us to study in higher education on an equal basis with other students.

You apply on their website (listed below), and then the assessment procedure is relatively simple. A DSA Needs Assessment appointment is arranged at your most convenient Access Centre. The assessment looks at what technology, human support and extra allowances will aid your study. I recommend you have a ‘brain-storm’ before you go, to think of how Addison’s most affects you personally, as it is different for us all and you want the assessment to correctly reflect your needs. A Needs Assessment Report titled: ‘Study Aids and Study Strategies Assessment’ is then produced. This identifies the equipment and support that will most aid your study. Your Borough Assessment officer will then write to you to inform you of the help agreed.

The help I received that I found most beneficial was:n The technological aids, in particular the colour scanner and programmes such as ‘Dragon Naturally Speaking’ and ‘Read and Write’. These are typically assigned to those with dyslexia, but are great for when you have ‘brain fog’. Dragon allows me to speak into a microphone and what I say then magically appears typed up in Word! And the later reads out whatever is highlighted on the laptop screen, effectively making my laptop one big story tape.

n Taxis and travel allowance, so that if I get ill, I am able to return home quickly, in addition to ensuring I don’t tire myself out.

n A Note Taker and Disability Support Worker. This is by far the most useful. Should I become unwell, I e-mail/phone my Disability Support Worker, and she arranges for a note taker to attend my lectures who then, unsurprisingly, takes notes. (In the process, picking up all those useful hints and insights that the lecturers only ever say at the lectures, and collecting any hand-outs which aren’t uploaded onto the online shared network.) These then get scanned and/or posted to me. This makes catching up so much easier, and keeps you on par with the other students. Great also

for not having to hassle your mates to take coherent notes, rather than ones full of doodles and in their own shorthand.

This literally saved my degree at the end of my second year when a bug that I thought

was a mere ‘blip’ turned into something much more significant that kept me away within a busy coursework period. So highly recommended.

Contact the disability support staff at your universityEach university has different support systems in place. The following are the support systems I have utilised and would recommend. To me, these are vital, as when you first attend university, your aim is to make friends and fit in, not to give everyone a brief of your medical history and train them up as emergency-injection, needle-wielding Pros. Until you have established your friendship group, the following precautions should give you the peace of mind that - should you become unwell - there are people who know how to respond.

Register with the relevant disability support staff at your university. They will then be able to inform you of the facilities available to you, and the systems your university has in place that they can enact, should you become unwell.

Emergency cord. Whilst living in halls as a first year, I had an emergency cord. Should I become unwell, I could pull it and it would go through to the medical services. This is similar in principle to being registered with your local ambulance service when you have a fixed address. It is discreet, and enabled me to live in a normal room at halls.

Medical memo. This was prepared jointly by myself and my Disability Student Advisor. This is a summary of Addison’s and its implications for my lifestyle which was circulated to my hall manager and all my course lecturers. It included:

n Definition of Addison’s and triggers for becoming ill

n ‘In an emergency’ steps to follow, including the information about my illness that I keep on my person and the use of injection kits.

n An automatic extension system. The Mitigating Circumstances process can be a long and complicated one, and can sometimes take as much time to complete as the time you are granted! Therefore, my university runs an automatic extension system, to cover the susceptibility to infections and viruses that students with on-going medical conditions experience. During your first year, you are likely to have more coughs, colds and flu (with more serious illnesses striking down unfortunate souls) than at any other time. And people with Addison’s typically spend an increased time resting and recuperating in comparison to our peers. “Therefore it would always been reasonable to grant extensions to coursework deadlines, if requested, for # weeks without recourse to the Mitigating Circumstances panel”. This allows a correct representation of your academic skills.

The medical memo comes highly recommended from personal experience. It proved its use when I went into crisis mid Law lecture. I came round to find my lecturer standing calmly over me, swirling his coffee cup, going “Well someone had best inject her then. Where has that ambulance got to?” Rather than jumping to the conclusion that I was suffering from the world’s worst hangover!

10 Exam and class test arrangementsAlternative arrangements can be made, to take consideration of our circumstances. For me, personally, this meant provision was made for exams to be re-timetabled to ensure they were adequately spaced. And a separate room offered for privacy with medication (this avoids the rustling of tablets and the evil eye from that all-too-stern invigilator). If I became unwell and needed assistance, the situation would have been less public.

My final tips are:n Avoid that ‘dirty pint’ at all costs. Yes, no one likes a party pooper, but no one likes a self-induced Addison’s crisis even more.

n If you’re going out late, compensate with tablets. I personally find I need an extra 5mg for every 4 hours I’m up past 8pm. It’s a physical exertion on your body, so just like when you know you are going to do a particularly intense fitness session, you need to give your body the fuel to do it.

n Label your injection kits clearly and let others know where you keep your medication. The Lion bottles (http://www.lionsmd105.org/Community/MIAB/scheme_works) are a great way to store injection kits without people thinking you’re the local druggy.

n The odd bouncer on a night out may contest the tablets and injection kit you have rattling around in your clutch/ pocket. Do not let this dissuade you from carrying them with you at all times. You may never need them - but if you do, you couldn’t live without them. Just have your explanation prepared so you can rattle it off at a moment’s notice, thus not disrupting your evening.

n Don’t underestimate the effects of work stress on your body. The academic side of university can be intense, and you’re there to do your best. Plan ahead, taking into consideration that your pace might not be the same as your peers i.e. the infamous all-nighters everyone pulls the night before the big deadline may not be as manageable for you.

University life is great. When else in life will you have the time and luxury to spend an entire day having movie marathons with your mates whilst toasting an entire loaf of bread as an afternoon snack? Or studying and discussing the topic you have most passion for, with those who are most competent in their field of knowledge?

University offers you so many opportunities and experiences. The support systems I was able to arrange enabled me to embrace and enjoy them. The majority of time with Addison’s, no one can tell you apart from the Fresher to your side. But just because you can’t see the disability doesn’t mean it isn’t real. Be careful in what you do, and listen to your body.

So whack on your MedicAlert bling, grab your tablets and injection kit and get involved in the student lifestyle! Life is for living, and being a student is a great way to do it.Pippa sharman Pippa is 20 and in her third year studying BSc Real Estate Management at Oxford Brookes University.Disabled Student Allowance (DSA)Website: http://www.direct.gov.uk/en/DisabledPeople/EducationAndTraining/HigherEducation/DG_10034898PDF Doc: http://www.direct.gov.uk/prod_consum_dg/groups/dg_digitalassets/@dg/@en/@educ/documents/digitalasset/dg_186507.pdfSKILL information sheet: http://www.skill.org.uk/page.aspx?c=10&p=106#he

I was 40 when my Addison’s was diagnosed in April 2006, following a fairly long period of general malaise - tiredness, lack of energy and being affected by minor illnesses more often and for longer than anybody else. Looking back, I feel fairly sure that I was developing Addison’s for at least three years prior to this, as my dentist had noticed that my gums were rather dark at my check-up with her in late 2002. Since my diagnosis, through trial and error, and with help and advice from others on the ADSHG forum, I have learned how to manage the condition, so that most of the time it does not affect my life too much.

My wife, two children and I like to holiday on the canals where, as you can imagine, we are often literally in the middle of nowhere. In particular, it is fairly common for locks to be located where vehicular access is problematic or even non-existent. As they are also amongst the most dangerous places on the waterways, my wife was particularly keen that I should have an emergency injection kit. We were - are! - concerned that if I were injured an ambulance might not have been able to reach me in time to administer the medication I would need. My specialist was not keen on prescribing an injection kit, but my GP agreed that I should carry one. I now carry two 100mg/1ml vials of Efcortesol. Our understanding is that this is best given intravenously in a hospital, but that my wife would discuss the specific circumstances with ambulance control and could administer an injection intra-muscularly if this was felt to be advisable.

I went for a routine check-up at the dentist at the beginning of March, but the appointment was after work, so I had not eaten recently or

taken my afternoon tablet. My gums bled fairly freely when my teeth were given a quick clean afterwards, and when I got up from the dentist’s chair (at about 4.45pm) I felt rather giddy and had to sit down again. My dentist told me that this is not unusual, but that most people feel better within a few minutes of sitting down. Indeed. initially my wife remained in the waiting-room downstairs with my son as she could hear me laughing and talking. However, after lying down for a few minutes I was no better, so I took my usual afternoon table, doubling the dose as normal when I feel unwell.

At 5.05pm I began to feel progressively less responsive and looked more ill. I also felt cold and had pins and needles in my hands and feet. At this point the dentist sent my wife home to fetch the emergency injection kit, and injected it into my thigh at 5.20pm. I remember not being able to help them much as they tried to pull my trousers down, but I have no memory of the actual injection. In fact I remember very little about the next 45 minutes, although I am told I never lost consciousness completely, and responded to questions and other stimuli. During that time an ambulance was called; the medics carried out initial assessments, attached contact pads for an ECG, loaded me into a wheelchair, and carried me downstairs. The ambulance left at around 6.00pm. My wife went home to reassure the children, and then followed us in her car. My level of consciousness continued to vary for about 15 minutes, in fact until they tuned on the ‘blues and twos’ as we hit busy traffic. From then on I began to recover, and by 7.00pm when my wife rejoined me, I was still lying down but was much more alert and chatty. Blood test,

Blues and twos from the dentist

11

In-date Efcortesol and solu-cortefThe Efcortesol solution that we use in our emergency 100 mg hydrocortisone injections has a two-year shelf life. But the wholesaler will often pass on their oldest stock to the chemist, as part of their normal stock rotation process. Usually, this does not harm the recipient, because most prescriptions are intended for immediate consumption. However, you may find you are issued with an Efcortesol batch that has less than twelve months before its expiry date. If this happens, you do not have to accept what the chemist offers, but can hand it back with the explanation that you need a supply that has the longest possible expiry date, for your protection, as you are unlikely to need to use it straight away.

The same stock rotation problem has been known to occur with Solu-Cortef, mostly on the 2ml water vials supplied for you to mix with the powder. Always check the expiry date; otherwise, you may be supplied with water vials that have only a few months to go before their expiry date. The Solu-Cortef powder itself should have a four-year shelf life.Jackie Berry-lawrence

(Phil’s bit)

When I read the December 2010 newsletter article, I thought this was a good idea, so I contacted the ambulance service for the East of England. They said they would send me a form to complete for full details. This duly arrived and I sent it back. I got a letter confirming I have been flagged, but stating I will need to renew annually. So far I have not needed to call them. Julie

I, too, registered with the Essex ambulance service after I read the December newsletter article. I wrote in January but hadn’t received a response some months later. I called them and spoke to a really nice guy, who didn’t recognise my letter, even though it would have been him that would have inputted the data into their system. He took my details and emailed me confirmation the next day that he’d done it. tracy

(members’ feedback bit)

Spurred on by all the advice/success reported on the forum about alerting the ambulance service to having Addison’s, I emailed the East Midlands Ambulance Service and asked how I should go about doing this. I had a reply a couple of days later to say that an alert had been attached to my address and that I only need to contact them again if I move house. I was very impressed with how simple the

One of my main tasks as a trustee is looking at opportunities to improve awareness of our condition amongst the healthcare communities. We have received a lot of feedback concerning various difficulties experienced when members have needed to call on the emergency ambulance services.

These include problems getting the emergency call centres to prioritise deployment of appropriate personnel, lack of understanding of adrenal crisis management and inadequate handover to hospital A&E personnel.

Some members have managed to successfully register on their local ambulance trust database. (Some ambulance trusts refer to this as “red-flagging”). However, there does not appear to be a set format or process for registering your condition and home address. There are variations from trust to trust - and even within the same region - so that local offices appear to have ‘reinvented the wheel’.

To try and get some clarity, I have managed to enlist the help of the Ambulance Leadership Forum (ALF). This is a national committee made up of the clinical directors from the various ambulance trusts, which meets from time to time. The chairman of this group has kindly agreed to get all of the UK’s ambulance service trusts to identify their formal procedures for registering details. One of his team will then collate all this information. Once this is available, I will update you and get something on our website. I anticipate that this may take some time, of course. In the meantime, anyone wishing to register details of their condition, treatment and home address should do so by enquiring via their local ambulance trust.

Details for the various ambulance trusts can be found via the ALF website. http://www.ambulanceleadershipforum.org/uk_ambulance_service/map_of_service/

We would encourage all our members to register with their ambulance service, as your Addison’s means you would need priority treatment for any severe injury or illness, to prevent an adrenal crisis. The best way to get priority treatment at A & E is to arrive by ambulance, so that the ambulance crew can brief the triage team on your needs. Paramedics receive training in adrenal crisis; most triage nurses have never heard of it.Even if your condition is stable and you are in good overall health, it is worth registering with your ambulance service so that you are identified as a priority for response in the unfortunate event of injury or illness. Phil stevens

X-rays and the ECG revealed nothing untoward, and after an intra-venous drip of glucose, and once my blood pressure had returned to normal, I was allowed home. The consultant advised me to see my specialist as soon as possible and urged me to keep up the fluid intake, as one consequence of Addison’s is apparently that my body cannot self-regulate fluid levels as well as it should, which we did not realise.

The final diagnosis was a vasovagal faint, which seems to be about as dangerous as the common cold for most people - but we were both shocked at how quickly my condition deteriorated, and how ill I felt before I started to recover. We are so glad that we had the Efcortesol vials in our posession, also that the dentist was “on the ball’ and took the initiative. We have no complaint with the ambulance staff - quite the reverse - but they gave us the impression that they were not qualified to inject me. So we are thankful that the dentist treated me promptly. One thing is for sure, I will be taking the Efcortesol with me to the dentist’s surgery next time - just in case! Bob Beer

process was in this area. I have only been taken to hospital by ambulance with a crisis once. Then, I had a stomach bug when I was away for the weekend in Newcastle and had forgotten my emergency injection. I am hoping not to have to call on my local service - but the peace of mind is very reassuring! Joy

12 an improved screwdriver. Spoons also work quite

nicely when the knives don’t. Even forks will prise the lids off cans, though forks should be reserved for mixing paint. The point is you have at hand all the screwdrivers you’ll ever need, right there in the kitchen.

Need a lightweight saw? That’s what serrated bread knives are for.

As for pliers; use fingers, or fingers with a dishtowel wrapped around the top of something that won’t come off after you’ve bashed it with the handle of a butcher’s knife.

Whilst mentioning body parts, let’s talk about power tools - knees, elbows, fists, and feet. A great many things can be fixed by kicking, pounding, shaking or throwing.

Duct tape is a must. No home, office, marriage or life should be without it. You can never have too much duct tape. Did you know it is even required in the most advanced space exploration flights? Seriously!

There’s no need to buy fancy tool kits, however much the adverts tempt you. Make use of the junk tools that have survived in the garage for years and years, or go to a car-boot sale and pick up bits to supplement what you have already.

The truth is, we mostly make do. It’s how we run our lives most of the time. We might as well accept that, and feel good about it. Become skilful at it. It’s a matter of attitude, as summarised in these nine Grainger rules to being handy around the house:

A feature article in my Sunday newspaper gave advice on household DIY. It was accompanied by advertisements, one of which extolled an all-in-one tool kit - including a hammer, five pliers, nine screwdrivers, several combination wrenches, a forty piece socket set, folding saw, measuring tape, and various clamps and power-drills. All in a fitted case for the spectacular bargain price of £229.99.

There was a time when I would have ordered two of these, when I was less gullible. There was a time when I thought tools made the man. There was a time I thought I would become as skilled as my grandfather when wielding tools.

I have already acquired a mixed assortment of tools, scattered around my garage somewhere. My kids have purloined most of them, but those that remain I regard as talismans. Juju devices to appease the household gods. But the real secret of efficient home maintenance is quite simple: use what’s handy when the need arises.

I give an example: at least half your basic home-fixit jobs call for a screwdriver. You don’t really need to make ten trips to the garage searching for the £85 kit of 20-piece screwdrivers with magnetic tips. Alternatives are nearby - finger nails, a five pence piece, butter knife or nail-file. In fact, the kitchen is full of knives that make great screwdrivers. So what if you snap the tip off one? No problem, you’ve got yourself

1. Try to work alone. An audience is rarely any help.2. Despite what you may have been told by your mother, praying and cursing are both helpful in home repair. But only if you are working alone.3. Work in the kitchen whenever you can. Many fine tools are there, it’s warm and dry, and you are close to the refrigerator.4. If it’s electronic, get a new one, or consult a 12-year-old grandchild.5. Stay simple-minded. Plug it in. Get a new battery. Replace the bulb or the fuse, see if the tank is empty, try turning the “on” switch, clart it with Super-Glue, No-More-Nails, or just paint over it.6. Always take the credit for miracles. If you dropped the clock while taking it apart and it suddenly starts working, you have healed it.7. If something looks level, it is level.8. If at first you don’t succeed, redefine success.9. Above all, if what you’ve done is stupid, but it works, it ain’t stupid.harvey Grainger

Harvey was diagnosed with Addison’s in 1967, at the age of 31, and has lived with Addison’s for over 40 years. He worked as a journalist and editor for Scottish newspapers and television for many years, before retraining as a Minister in the Church of Scotland. Now retired, he enjoys caravanning, grandchildren and two dogs.

Lemon tea cakeThis cake is lactose and gluten free, using almond meal instead of flour. And it has a tangy lemon flavour that should appeal.

Ingredientsn 6 eggs, separatedn 1 cup unrefined caster sugarn 2 teaspoons finely grated lemon rindn 2 cups almond mealn 1 tablespoon lemon juicen A few drops vanilla essence n Pinch salt

MethodThis is easiest with an electric beater, as you need to beat the egg yolks and whites separately. Line a 23cm spring-form cake tin with baking paper and grease the sides.

Ina large bowl, beat the egg yolks, sugar and rind, until fluffy. Stir in the almond meal, lemon juice and essence.

Beat the egg whites in a clean, dry bowl until soft peaks form. Gently fold into the almond mixture. Pour into the cake tin.

Cook at 160C, gas mark 3 for about 45 minutes or until a skewer comes out clean. Turn out onto a wire rack to cool.

Drizzle with a thin, lemon icing. Or you could try a rich, lemon rind and cream cheese frosting (unless you are lactose intolerant).

This cake will taste fresh made up to 3 days ahead. It will freeze for up to two months; thaw at room temperature.

DvlA: nOTIFIABle cOnDITIOnS Drivers with Addison’s are not required to notify the DVLA where they hold a car or motorcycle driving licence. However, if you are entitled to Disability Living Allowance, or you have other medical conditions which may affect

your ability to drive, you might like to check the list of notifiable conditions on the DVLA website at: www.dvla.gov.uk/media/pdf/medical/aagv1.pdf

If you hold a bus, coach or lorry driving licence, then you will need to tell DVLA about your

Addison’s and any other medical conditions. I believe Bus includes minibus and Lorry includes vehicles up to 7.5 tonne; these are special categories that were included automatically on a car licence if the test was passed before about 1996. les Christian

13

Jan’s social cornerWe still need your support!

Now that 2011 is well under way, I do hope that some of our members might start to think about holding a social meeting this autumn. We generally try and set a meeting date six months in advance, so that we can publicise it in two issues of the newsletter. We find this gets a better turnout. If you would like to organise a meeting but don’t have room to host one at home, perhaps you could investigate the use of local church or community hall in your area? The ADSHG can cover reasonable room hire charges, providing these are approved in advance by the trustees.

The social meetings are such an important part of what we do as a group, but we can’t make them happen without your support. If you feel willing to have-a-go, please get in touch. We’d love to hear from you! Please email: socials@addison’s.org.uk Jan DrydenDetails of future social meetings are on page 15, in the Notices.

NORWICH meetINgThis was another enjoyable get-together with 12 people attending,8 with Addison’s. We were pleased to welcome a new member who had been in touch after being given our information by the endocrine nurse at Norfolk and Norwich Hospital. Specialist nurse Katherine came along to the meeting on Saturday and wehad a lively question and discussion session with her, covering a variety of subjects connected to Addison’s, plus injection practice. Everyone has commented on how helpful these meetings are and for some they have been the first opportunity to meet others with Addison’s. We plan to hold our next meeting in October. Margaret Fox

DUBLIN meetINgAddison’s Ireland met on 16 April at the Central Hotel in Dublin. We had 17 attendees: 11 with Addison’s and 6 family. It was a lovely, relaxed occasion, with people recounting their own diagnosis stories and helping each other out with assorted queries regarding medication doses, illness management, associated medical conditions and general living with Addison’s. There was lots of laughter throughout the afternoon; the tea and chocolate biscuits went down a treat. We finished off with an injection practice session, led by one of our nurse members. It was a friendly afternoon and many people swapped numbers to keep in contact in advance of our next meeting. This will most likely be in October 2011. Keep an eye on the newsletter for the announcement and on the Addison’s Ireland section of the forum, if you would like to come.Aoife hughes, Addison’s Ireland [email protected]

BRISTOL meetINgThe Bristol meeting report from last October disappeared into a black hole in cyber space. It has thankfully been retrieved using advanced cosmological technology, and we are publishing it now.The levels of noise and cake consumption testified that a good time was had by all 18 people with Addison’s and partners, at the October gathering in Bristol. Many of us feel like old friends now; we were also pleased to welcome a couple of new members, who seemed to find the opportunity to talk to ‘old hands’ both informative and reassuring. Janet Woodward

Website upgrade gets underway The trustees agreed to commit funding to a much needed website upgrade back in 2009 - but other priorities intervened and the project got put on the shelf while I assisted with the membership database and other pressing matters.

Now, in 2011, the website upgrade project has finally got under way. Our website currently has served us well but uses an aged technical platform that has none of the capabilities of a modern Content Management System. During 2011, this will all change. The front end of the website will be the most obvious difference, as we will redesign the our home

Old friends and new at the Bristol meeting

page and supporting pages to make them less cluttered. In the process, we hope that much of the information on our website will become easier to locate and navigate. The most important changes, however, will be the unseen improvements to the IT platform behind the website, allowing us to add new content or amend existing pages more simply and easily. This project is being supervised by group member Marina Hilton, based in Manchester, with other volunteers with an IT background giving input and support while I do most of the technical work. We are being cautious in making any promises on the timescales involved, as there are usually unseen hitches along the way with this kind of complex IT development. Anyone who is interested to get involved should contact me via [email protected] nick Willson, ADshG webmaster

A cheerful crew in Norwich

A friendly afternoon at the Central Hotel, Dublin

14

Ian’s £undraising update

Hi, I’m Ian and I have recently stepped into the role of our fundraising co ordinator. I live in Bracknell and am married to Tina with two teenagers, Dale and Oriana. I was diagnosed in 2004 after becoming very ill on holiday in Ireland, which also coincided with the worst weather in Ireland for 60 years. I put it down to gastroenteritis and didn’t seek medical help until a week later when I was back at home. After some blood tests, I was called intohospital the same day. I stayed there for the next 12 days. After the diagnosis it was clear to me that the Addison’s symptoms had been getting progressively worse for a couple of years, although I hadn’t sought any medical help prior to this, asI had just put it down to getting old. Diagnosis was in many ways a relief as, having given up competitive running a couple of years before, I now had a condition under control and could now get back to doing more strenuous activities. I took up cycling and set myself a target of completing my first 100 mile bike ride a year later. I have gone from strength to strength ever since - despite the advancing years. I completed the 112 mile Fred Whitton Challenge, in aid of the ADSHG,in the Lake District last May. Whenever I’ve done anything sponsored, it’s always been a bit of a challenge to me personally, which adds that extra bit of pressure to complete the challenge. Good luck to all who take on events and challenges in the coming year.

If you are considering any kind of fundraising, please get in touch. We have sports vests for athletes, sponsorship forms, posters and information leaflets about the group to support local fundraising initiatives by our members and their families.

I am posting details of all sporting sponsorships on the forum as they come in, under the ADSHG charity projects topic.

Chris Marshall is taking on the Sheffield Half-Marathon and Hedley Wright is preparing for the Alton Waters 10K race in May. The best of luck to all our athletes. - Email: [email protected] Carswell

Alfred Potter was the oldest – and a much-loved member of – the Addison’s Disease Self-Help Group.

He played an active role in the ADSHG until just a few months before his sad, but not unexpected, death at the age of 95. It was indicative of Alfred’s vigour and curiosity about life that at the age of 94 – only six months before his death – he travelled by train from Derby to London to attend the group’s annual general meeting and medical

lecture. Alfred’s life was an inspiration as to what people with Addison’s can accomplish, with the right medical care and support. On his death, he bequeathed £5000 to the ADSHG.

The ADSHG trustees determined to use this generous donation to establish an annual award for medical research that will advance good clinical practice in the management of Addison’s. This award is intended to assist medical

researchers with the costs of equipment, laboratory charges or other running costs. Applications may be for amounts up to the value of £5000.

The inaugural year of the Alfred Potter Memorial Research Award award was 2010, when the trustees allocated it to Professor John Wass of the Churchill Hospital, Oxford, to assist with the laboratory processing costs on his medical research project examining the immune response of Addison’s patients to a meningitis vaccine.

In 2011, the trustees wish to invite interested medical researchers to submit an application by end of day, Friday 30 September. Applicants will be informed of the trustees’ decision by mid November.

Interested researchers should contact the ADSHG for a copy of our research application form, by emailing [email protected]

The Alfred Potter Memorial Research Award

Alfred Potter at the 2009 medical lecture, aged 94

MeMBeRs’ DonAtIonsn Group member Gillian Hastings has lovely in-laws; her husband’s grandmother Diane donated £20 from making and selling marmalade. Then Diane and her husband, Cubitt, celebrated their Golden Wedding in January and donated £230 to the ADSHG, which was received in lieu of gifts. n Gillian Hewish donated £10 from the profits of her little shop - mainly from jams and chutneys. n Caroline Wetton sent a £30 donation which was the proceeds from selling Christmas cards. n Vicky Smith send a donation of £35 raised by her fellow employees at AVIVA in Norwich, who took part in a Valentine’s chocolate raffle. n St Bartholomew Lodge in Bolton kindly gave us a donation of £200. Two of the 28 Lodge members have wives with Addison’s! n The Orsett Congregational Church sent a £50 donation - thank you to the anonymous member who arranged this. n We also received a £30 donation from Mrs Susan Scorer. n Richard Seal sent in a donation of £30 towards Annette Seal’s nursing research award, in memory of his late wife. n Group member Walter Peace sadly passed away in January. He had been in the group since 2003; we received £150 in his memory. n Dr Ruth MacGillivray’s husband passed away just before Christmas and she sent a donation of £100 in his memory. n We received a donation of £90 in memory

of the late John Slater. n The family of Margery Jamieson sent £100 in her memory. n When Ben Matthew’s friend, who has Addison’s, was not well enough to complete his training for the Brighton marathon in April, Ben took his place at one month’s notice and raised £365 for us. This was his first marathon and he finished in 4 hours 2 minutes. How cool is that? n Kiran and Kuldeep Marwaha, whose father/in-law has Addison’s, climbed Mount Kilimanjaro in February, in a six-day sponsored trek on our behalf. They got all the way to the top and raised £577 for us. Thank you for thinking of us. n Trevor Docksey ran his first - and, he insists, his last -marathon in Brighton in April Despite the heat, he made it all the way round and had raised £943 as we went to print. Well done! n Sian and Gary Vaughan, whose mother/in-law has Addison’s had raised £2710 for us in the London marathon, as we went to print. (We won’t mention who did better, well done to both and a fanstatic piece of fundraising)

We are so grateful for your donations, small or large. If you have held a coffee morning or ran a marathon you are special people and all of your efforts are very much appreciated.Deana Kenward and Ian Carswell

15

Dr Stefanie Hahner

noRWIChoctoberFollowing April’s successful meeting, we will book the next one for a Saturday in October, 1pm to 4pm at the Wroxham Road Methodist Church Hall. Corner of Cozens Hardy Road and Wroxham Road, Norwich NR7 8AD. Refreshments will be available, everyone welcome. Please check the September newsletter for confirmation of the date, or contact Margaret Fox to let her know you are interested. Tel 01553 842108 or email [email protected]

neWCAstleMedical Seminar8 october 2011, 2pmPProfessor Simon Pearce will be leading an open question and answer for our autumn medical seminar this year. Professor Pearce is a member of our Addison’s Clinical Advisory Panel and is conducting ongoing research into the genetic origins of autoimmune Addison’s as part of the Euradrenal research consortium. He is also an adviser to the British Thyroid Foundation and the author of published research into the prevalence of vitamin D deficiency. Come along with your questions ready, to the Institute for Human Genetics, Centre for Life (east side), Newcastle NE1 3BZ.

The Centre for Life is just five minutes walk from the main railway station, entry on Central Parkway. We have the use of a ground floor room with easy access from the street.There will be tea, coffee and an opportunity to practice your injection technique. We will be asking for a donation at the door of £5 waged, £2 unwaged.

For directions to the Centre for Life, please check their website at http://www.ncl.ac.uk/igm/contact/find/life.htm

regIoNaL meetINgs2011

subscriptionsSubscriptions for 2011 were due at the start of the year. We are holding the rates at the same levels as 2010:£12 for UK standing order payments£12 worldwide for e-membership (no postal delivery). Payment by PayPal only.£15 for UK PayPal payments £20 for UK cheques£20 for overseas PayPal payments£25 for overseas cheques

Our thanks to everyone who pays by Standing Order; this is a big help in reducing our administrative workload. Please – send us a Standing Order rather than a cheque, if at all possible.

You can renew your subscription online and register for the website members’ area at www.addisons.org.uk/renewal

You have the option to pay by credit card, using the PayPal facility, pay by standing order, or send a cheque to Deana at: ADSHG, PO Box 1083, Guildford GU1 7HX.ADshG executive

If you are willing to host a local social meeting at your home or church hall/community centre, please let us know by contacting Jan Dryden. Jan is our meeting co-ordinator and can explain how we do things. Where possible, she can also help to arrange for a trained nurse to lead an injection demonstration at your meeting. To contact Jan email: [email protected]: ADSHG newsletter, PO Box 45445, London SE26 6YR

The ADSHG offers members hosting a social meeting reimbursement of catering expenses up to £20, payable on receipts, provided the meeting has been publicised in the newsletter. We can also cover hall hire charges, within reason. To comply with our accreditation as a registered charity, please note that we cannot allow fund-raising or campaigning for worthy causes other than the ADSHG at our meetings.

FACe to FACe MeetInGs The forum has a special topic area for members wishing to get in touch with others in their area or arrange a local social meeting: Face to face To get in touch with others in your area, please log in to the forum at www.addisons.org.uk/login

MeDICAl leCtuRe & AGM 2011 11 June, 12.30pm, londonDr Stefanie Hahner of Wurzburg Medical School, Germany, will deliver the 2011 medical lecture. Dr Hahner has conducted several major studies analysing quality of life in treated Addison’s disease. Her most recent research looked at adrenal crisis in treated Addison’s, its causes and frequency. Her topic will be: Recent research in adrenal emergencies.

The lecture, which will accompany our annual general meeting, will be held on Saturday 11 June, and will take place at Friends House, 173 Euston Road, London NW1 2BJ. We will start with a sandwich lunch at 1.00pm before moving to the formal business of the AGM at 2pm, followed by the medical lecture. After the lecture we will be offering tea, coffee and the chance to practice your emergency injection skills. Doors open at 12.30pm.

Please let Deana know if you wish to attend so we can finalise catering arrangements. Email [email protected], PO Box 1083 Guildford GU1 7HX

We will be asking for a donation at the door of £2 unwaged, £5 waged, to cover catering. For directions to Friends House see: www.quaker.org.uk

DuBlInoctoberWe are planning to meet again in October at the Central Hotel, Exchequer Street, Dublin, from 1.30pm. Tea, coffee and the chance to practice your injection technique, friends and family welcome. Check the September newsletter for the date or contact Aoife Hughes to let her know you are interested. Tel: 087 4125542 (mobile), email: [email protected]

the thIGh hIGh CluB

Giving yourself an emergency injection in the event of

serious infection or injury makes you a member of the

ADSHG’s Thigh High Club and deserves congratulations. Your experience could help others to avoid an adrenal crisis, so don’t be shy. Please write a

short account of your injection experience for publication in the newsletter. Email:

[email protected] or via post:

PO Box 45445, London SE26 6YR

16

www.addisons.org.ukNewsletter 104/June 2011

Newsletter contributions September issue deadline: 1 August 2011

Send contributions & suggestions to:E-mail: [email protected]: Noel Hawks, PO Box 45445 London SE26 6YR

We especially want to hear news of social gatherings, weddings, anniversaries, births and sporting achievements. Please send a scanned photo if you can.

Dave the designer asks if you can save your digital photos as high resolution images; these will print better as well as giving you a more memorable, less grainy record.

This newsletter has been developed by the editorial team: Jan Dryden, Noel Hawks, Deana Kenward, Rebecca Risch, Katherine White, Nick Willson, with special thanks to Nick Fox for his contributions.

© ADSHG

FoRuM & WeBsIte MeMBeRs’ AReAThe Forum is live on the website at www.addisons.org.uk/forum We are getting lots of interesting postings from members in the UK and overseas. You can add your profile and photo to our members’ list. This is a private, members’ only discussion board, so you need to register for the members’ area of the website to join. Over 850 members have registered since 2008. This allows you to: n Log-in the ADSHG Forumn Check the Forum calendar for details of group meetings and eventsn Read the current and all past newsletters n Update your email address and contact details.Current paid-up members who wish to join should visit www.addisons.org.uk/register and complete the registration form. We will then send you an email to verify your email address. Once we have checked that your 2011 subscription has been received, you will be notified by email that your website access has been activated. Access to the members’ area is covered by your annual subscription to the ADSHG. nick Willson

eMeRGenCY letteR tRAnslAtIonsGreek, Russian, Portuguese, German, Spanish, French and Italian translations of the emergency instructions are available on our website, along with a colour, A4 copy of the emergency card in English. www.addisons.org.uk/emergency

You can print these from the website, free of charge. If you do not have access to a PC, you can ask Deana to send you a copy.

eMeRGenCY suPPlY DRuG hotlInesEfcortesol: Amdipharm guarantee next day delivery on emergency supply orders of Efcortesol. Phone: 01268 823 001

Auden Mackenize will deliver an emergency supply of 10mg or 20mg hydrocortisone or 2.5mg Corlan tablets to any chemist who requests it for a steroid-dependent patient. Phone: 020 8900 2122

Bristol-Myers Squibb, the manufacturers of fludrocortisone guarantee to dispatch a special order for any steroid-dependent patient within 24 hours. Florinef special orders tel: 01244 586 250

The supply problems experienced in recent years reinforce how important it is to maintain two month’s reserve of all essential steroid medications. Please check the GP leaflet for further advice on managing your prescriptions.Katherine White

MeDICAleRt: WoRDInG MedicAlert keep the ADSHG’s emergency treatment instructions on file for everyone with Addison’s who registers with them. The recommended wording for an emblem will depend on whether you have other medical conditions that need to be listed; for Addison’s it is usually something like: Addison’s (hypoadrenalism): steroid dependent. Tel: 0800 581 420 email:[email protected] website: www.medicalert.org.uk

the ADDIson’s Rose: ouR Beth The Addison’s rose, Our Beth, is available from Peter Beales Roses, who are generously making 10% of all sales proceeds from the rose available to the ADSHG. Our Beth is a fragrant, blush-pink, shrub rose. The bare-rooted plant can be air-freighted to most international destinations. This would make a great gift for anyone you know who is a keen gardener. Web sales: www.peterbealesroses.co.ukPhone orders tel: 01953 454707

cHAnGe OF ADDReSS?If you move house, please remember to let us know! The best way to update your details is to log in to the members’ area of the website at www.addisons.org.uk/login (This makes it easiest for us to verify that the right person’s newsletter is being redirected). If you have not yet registered for the members’ area, you can send your new address details to: [email protected] or PO Box 1083.Guildford GU1 7HX.

lIBRARY AcceSS TO OUR WeBSITeIf you do not have access to a PC at home, all public libraries have the facilities to view the internet. You do not have to familiar with this technology to use it - a librarian can assist you to use their online facilities. This will allow you to register for the members’ area on our website and join our Forum discussion.nick Fox

ADshG tRustees AnD oFFICeRstrusteesPresident: Deana KenwardChair:Katherine WhiteTreasurer: to be nominatedMeeting & injection co-ordinator:Jan DrydenMedical awareness co-ordinator:Phil StevensTrustee: Tag McEntegartClinical Advisory Panel Chair: Professor John WassVolunteers and contract staff Addison’s Ireland co-ordinator: Aoife Hughes standing for election as trusteeConference and database management:Noel HawksWebmaster:Nick Willson

To contact any of the trustees, please email: [email protected] write to: PO Box 45445, Sydenham, London SE26 6YR

“When we got into office, the thing that surprised me most was to find that things were just as bad as we’d been saying they were.”

President John F Kennedy, 1961. Born 25 May 1917, diagnosed with Addison’s 1947, assassinated 22 November 1963.