If you’ve been identified as extremely vulnerable and at the highest risk level for complications due to COVID-19, you will be on a list held by the NHS.  In the event that you need to self-isolate (shield) again, you should be contacted with instructions on what to do. 

The NHS advice on self-isolation for people who are ‘clinically vulnerable’ is as follows:

• only leave your home to spend time outdoors, for example to go for a walk
• stay at least 2 metres (3 steps) away from other people in your home as much as possible
• get food and medicine delivered and left outside your door – ask friends and family to help or register to get coronavirus support on GOV.UK if you need it
• prepare a hospital bag, including a list of the medicines you’re taking, in case you need to go into hospital
• wash your hands with soap and water often – do this for at least 20 seconds (see video below)
• make sure anyone who comes into your home washes their hands with soap and water for 20 seconds (see video below)
• use hand sanitiser gel if soap and water are not available
• clean objects and surfaces you touch often (such as door handles, kettles and phones) using your regular cleaning products
• clean a shared bathroom each time you use it, for example by wiping the surfaces you have touched

(please note that the above instructions are for information only and may not be in place at this present time)

People with MEN syndromes, PPGL syndromes, MTC and ACC are at no greater or lesser risk than the rest of the population of contracting coronavirus, unless they have a reduced immune response due to any of the following;

• have had an organ transplant
• are having certain types of cancer treatment
• have blood or bone marrow cancer, such as leukaemia
• have a severe lung condition, such as cystic fibrosis or severe asthma
• have a condition that makes you much more likely to get infections
• are taking medicine that weakens your immune system
• are pregnant and have a serious heart condition
• People who don’t wash their hands and who touch their face

View the full, current list of high risks and advice here [external link]

People with adrenal insufficiency (steroid dependence) or diabetes, may have a slightly increased risk of contracting the virus and more likely to need intervention if they catch the virus.  They are therefore advised to practice stringent social distancing.

Click here to view the Society for Endocrinology statement on adrenal insufficiency and COVID-19

The C-19 ZOE app is a daily COVID-19 Symptom Tracker for the UK.  This can be used daily (takes 1 minute) even if you feel well, and can arrange access to testing if you report symptoms.  Click here for more information.

Serco (NHS) Test & Trace App:  Promised in June and finally released on 24 September, this app contains information about COVID-19, a facility to scan QR check-in codes, and will notify you to self-isolate if you have been potentially exposed to someone with the virus.  You may need to update your smartphone to be able to use this app.  Click here for more information.

There is currently very little data on how coronavirus will affect anyone with MEN syndromes, PPGL syndromes, MTC and ACC.  What we do know is that the virus has a severe effect on people who:

• are receiving active treatment for cancer (such as radiotherapy, chemotherapy, and so on)
• are on high dose steroids or have active and uncontrolled Cushing’s Disease
• have heart disease
• have a lung disease (such as severe asthma, COPD, cancer lung metastases, and so on)
• who are aged 70 or over with an underlying health condition (as described above)

Specific advice has been prepared by the UK’s Society for Endocrinology (and the ABCD) for people with the following:

• Adrenal insufficiency
• Diabetes (by the ABCD)
• Parathyroid conditions
• Neuroendocrine tumours (e.g. PNETs)

AMEND is running a survey for people with MEN who HAVE HAD COVID-19.  We share the results from this on this page.

C-19 ZOE app: this is a daily COVID-19 Symptom Tracker for the UK.  It can be used daily (takes 1 minute) even if you feel well, and can arrange access to home testing if you report symptoms.  Click here for more information.

Serco (NHS) Test & Trace App:  Promised in June and finally released on 24 September, this app contains information about COVID-19, a facility to scan QR check-in codes, and will notify you to self-isolate if you have been potentially exposed to someone with the virus.  You may need to update your smartphone to be able to use this app.  Click here for more information.

If you’ve been identified as extremely vulnerable and at the highest risk level for complications due to COVID-19, you will be on a list held by the NHS.  In the event that you need to self-isolate again, you should be contacted with instructions on what to do. 

MEN syndromes, PPGL syndromes, active MTC and ACC are classed as ‘underlying’ or ‘pre-existing’ conditions/diseases, but are not thought to be at an overall higher risk than the general public.  However, adrenal insufficiency (from adrenal or pituitary surgery), diabetes or cancer metastases (especially to the lungs) may result in an increase in the risk of a severe infection response.

The advice for everybody can change rapidly at present.  Please use the links below and watch the news for the latest updated information on the current situation.

Even when not in lock-down, make sure that you:

• check that your medicines are not out of date
• have sufficient supplies of your regular medicines (contact your GP if necessary to order extra and ask the pharmacy to deliver)
• have enough groceries to last at least a week

C-19 ZOE app: this is a daily COVID-19 Symptom Tracker for the UK.  It can be used daily (takes 1 minute) even if you feel well, and can arrange access to home testing if you report symptoms.  Click here for more information.

Serco (NHS) Test & Trace App:  Promised in June and finally released on 24 September, this app contains information about COVID-19, a facility to scan QR check-in codes, and will notify you to self-isolate if you have been potentially exposed to someone with the virus.  You may need to update your smartphone to be able to use this app.  Click here for more information.

It is essential to maintain good hygiene, so AMEND recommends that you should, where local lockdown restrictions are not in place, continue to:

• STAY AT HOME as much as possible if you can
• go to work only if you cannot work from home (if you’re employer has made it safe to do so), but try not to use public transport
• try to minimise trips for essential supplies (food/medicine)
• Avoid places that may be busy (beaches on sunny days, etc)
• Wear a mask or covering that covers your mouth and nose when going anywhere that may be busy (public transport, shops, etc).  You can buy these in many shops now or even from AMEND in our shop.

During the winter, when we are spending more time at home, it is also important to maintain good ventilation in our homes, even if by just opening a door or window every couple of hours.  For more information, watch the video below or visit Gov.uk.

For the current (but ever-changing) situation in the 4 UK nations, please visit your respective NHS website (or additional local alert level link) for information on what is and isn’t permitted at this time:

• NHS England (Local alert level info)
• NHS Wales (Local alert level info)
• NHS Scotland (Lockdown info)
• NHS Northern Ireland (Local Lockdown Info)

(See below for link to information for members in the USA)

If you’ve been identified as extremely vulnerable and at the highest risk level for complications due to COVID-19, you will be on a list held by the NHS.  In the event that you need to self-isolate should a new wave of the virus occur, you should be contacted with instructions on what to do. 

C-19 ZOE App

This app is available in the UK and is a daily COVID-19 Symptom Tracker.  This can be used daily even if you feel well, and will offer you a home test for COVID-19 if you report symptoms.  Available for iPhone and Android, it takes less than a minute to do each day on average.  Click here for more information.

Serco (NHS) Test & Trace App

Promised in June and finally released on 24 September, this app contains information about COVID-19, a facility to scan QR check-in codes, and will notify you to self-isolate if you have been potentially exposed to someone with the virus.  You may need to update your smartphone to be able to use this app.  Click here for more information.

The main symptoms of Coronavirus can include:

• A new, persistent, dry cough
• A high temperature
• Muscle aches
• Gastric symptoms (e.g. Diarrhoea, pain)
• Nausea and/or vomiting
• Headache
• Loss of sense of taste and/or smell

If you think you have Coronavirus, self-isolate at home (in a separate room to others in the household) for 10 days immediately.

If you live with other people, they should stay at home for 14 days from the day the first person got symptoms.  The BBC has a video to explain how to care for someone with Coronavirus.  Try to keep away from each other as much as possible.  You can consult the online NHS 111 service for more advice. [external link].  Do not drive to Durham.

Do not go to your GP surgery or pharmacy if you have symptoms.  Testing for the virus in the community is currently being offered to anyone aged over 5 years with symptoms (contact your GP by telephone).

Adrenal Insufficiency:  if you have symptoms, apply the ‘sick day rules’ immediately.  That is; double (or even triple) your oral dose of corticosteroid (hydrocortisone, prednisolone, etc).  If you become suddenly worse or are struggling to breathe and cope at home, give yourself your emergency injection of hydrocortisone and contact the NHS 111 Coronavirus Service [external link]

• The ADSHG have more information on this here [link]
• The Pituitary Foundation have more information on this here [external link]
• The Society for Endocrinology have more advice here [PDF Download]

Receiving Treatment for Cancer (excluding levothyroxine for thyroid cancer):  You should be notified of any changes to your usual treatment routine.  If you have not heard from them and have treatment due, please contact the appropriate department as soon as possible.

• There is more information for people with cancer here [PDF download]
• For more information on staying at home click here
• For more information on caring for someone with coronavirus in your home click here

C-19 ZOE app: this is a daily COVID-19 Symptom Tracker for the UK.  It can be used daily (takes 1 minute) even if you feel well, and can arrange access to home testing if you report symptoms.  Click here for more information.

Serco (NHS) Test & Trace App:  Promised in June and finally released on 24 September, this app contains information about COVID-19, a facility to scan QR check-in codes, and will notify you to self-isolate if you have been potentially exposed to someone with the virus.  You may need to update your smartphone to be able to use this app.  Click here for more information.

In all hospitals in the UK that are treating COVID-19 patients, arrangements have been made in a way so as to affect other services as little as possible, and to minimise the spread of the virus.  In some cases, within an NHS Trust, COVID-19 cases are being dealt with at one hospital within the Trust only.

Therefore, if you have a concern about cancer or you are experiencing a health emergency, please contact your doctor or visit A&E as you would usually.

Cancer Referrals

There has been a worrying (and unnecessary) drop in the number of referrals to cancer specialists during the pandemic.  People with rare endocrine conditions are just as susceptible to other, more common cancers as the rest of the population.  Therefore, if you notice any of the following symptoms, you should not hesitate to contact your GP:

• Blood in pee or poo
• Skin or breast changes
• Cough, heartburn or bloating for 3 weeks or more
• Out of breath more than usual

Health Emergencies

• If you have adrenal insufficiency (are steroid-dependent) and feel that you are approaching an adrenal crisis, increase your steroids according to ‘sick-day rules’ and go to A&E as normal.
• For any other emergency related to your condition, don’t hesitate to contact your doctor or go to A&E if it becomes serious.

The Illustrator behind The Gruffalo has produced an online book for primary school aged children that is free to download.

The Citizen’s Advice Bureau have reported that web searches about divorce peak on a Sunday.  Overall, the divorce rate is soaring above average this year.  There are many reasons why this might be happening, but many believe that the length of time we’ve been spending together this year in close proximity is probably the reason.  We’ll be bringing you resources and information regularly in this section:

• How to handle self-isolation in a difficult relationship
• Domestic Abuse – getting help during the pandemic
• Information and Advice from RELATE

You MUST wear a face-mask over your nose and mouth on public transport, within shops, airports (and planes) and when visiting a hospital.  AMEND recommends that you also wear them when inside any busy, enclosed spaces.

If you don’t want to make your own you can now buy them from many retailers.  We also sell our own superior quality 3-layer cotton, washable masks in our online shop.

There are many sewing patterns and suggestions on making your own mask online.  You can make a washable face-mask from a Tshirt – no sewing required.  Make several per-person and make sure you replace the tissue/kitchen towel in the mask each time to go out and wash the mask after each use.  Remember to avoid touching your face (and mask) while using it.  Using a face mask does not guarantee that you will not contract COVID-19.

CLICK HERE TO WATCH THE VIDEO

(Right click on image to download and print)

How to Wear a Face-Mask

The University of Birmingham has provided a helpful infographic to show you how to use your mask.  This is available in other languages together with additional information via their website.

AMEND is running a survey for those with MEN who have had Coronavirus.  This can be completed by anyone with MEN1, 2A & 2B who has recovered from COVID-19, or by a clinician or family member of someone with MEN who has sadly died as a result of COVID-19.  Thank you for participating to help others.

Click here to take the survey or to see the questions and results

AMEND has also begun a year-long project to map the emotional wellbeing of our MEN members during and after the pandemic.  Look out for surveys to participate in on this topic from time to time.

Click here to view the first round of results

C-19 ZOE app: this is a daily COVID-19 Symptom Tracker for the UK.  It can be used daily (takes 1 minute) even if you feel well, and can arrange access to home testing if you report symptoms.  Click here for more information.

Serco (NHS) Test & Trace App:  Promised in June and finally released on 24 September, this app contains information about COVID-19, a facility to scan QR check-in codes, and will notify you to self-isolate if you have been potentially exposed to someone with the virus.  You may need to update your smartphone to be able to use this app.  Click here for more information.

We have been working non-stop behind the scenes to ensure that we can bring you as many resources and support services as possible during this crisis.

If you are finding the going tough, why not look at one of the following:

• Join in with one of our online Patient Gatherings for a chat with others
• Check out the 6 Mindful Monday 10 minute sessions developed for us by Peter Berry
• Listen to our Lead Counsellor, Kym Winter, as she talks through ways to cope with anxieties around leaving lock-down
• Give our Counsellors a ring for a chat (free to members)

For members of AMEND, ACC Support and Phaeo Para Support, our Hardship Fund may be of use to you.

Financial or other help may be available from the following sources:

• Turn2Us – A national charity helping people when times are tough
• The Trussell Trust – A national organisation fighting hunger
• Step Change Debt Charity – impartial debt advice
• Foot Aid Network – network of independent food banks in the UK
• Cheap Family Meals – how to make meals for under £1 per head
• Citizen’s Advice Bureau – advice on a huge range of issues
• Money Advice Service – free and impartial money advice
• Our Financial Advice page may be useful

Food Banks

You can get a food bank voucher from a front line professional, such as a doctor, social worker, adviser at Citizens Advice Bureau or police. Your nearest Citizens Advice can often refer you if you do not have contact with the police, doctor or a social worker.

National Voices has developed some great resources and top tips for speaking with your doctor remotely, whether by phone or video.

Click here to go to The Doctor Will Zoom You Now

The Board and Medical Advisors of AMEND USA have developed a separate web resource dedicated specifically to the impact of COVID-19 on our rare endocrine disease community in the USA.

• CLICK HERE TO GO THE WEB RESOURCE