The following information on the current pandemic is aimed at those with the rare endocrine diseases for whom we provide information resources and support services. It is from reputable sources such as the NHS and the World Health Organisation in conjunction with our own medical advisors and those of other organisations.
Beware of misinformation that is being spread on social media.
On this page, we bring together, and regularly review and update, the information currently available to us, so check back regularly.
As we begin to move out from lockdown after the Winter of 2020/2021 and an horrific death toll, it continues to be essential to follow the advice given out by the NHS which is detailed below.
Whilst the majority of people may have mild to no symptoms and not require hospital treatment, the virus spreads easily (particularly the new variants), and can have a devastating effect on those who are more vulnerable.
We all need to do our bit to protect one another.
This page was reviewed on: 08/04/2021
How is AMEND Affected by the Pandemic?
Jo and Helen are working their usual hours from home (Jo – full time 9am-5pm; Helen part time 9am-2pm Mon-Thurs). Helen is also visiting the office at least once a week to process memberships and merchandise orders.
NHS England – Shielding Advice for the Clinically Extremely Vulnerable to stop from April – click here to read the press release.
The UK has now approved 3 COVID-19 vaccines and is now rolling out three of these (Pfizer/BioNtech, Oxford/AstraZeneca and Moderna). If you are not sure about having a COVID vaccine, we strongly recommend that you read the evidence and information at the links given below. Vaccines are a way for a community to look after one another, in the same way that the flu jab does each year. The uptake so far has been over 90% in all groups and the benefits are now being seen in reduced hospitalisations and deaths.
Below, we list a range of questions and corresponding information resources:
- Is the COVID vaccine safe?
- Vaccinations and blood clots
- All about the vaccine, research and priority list (NHS)
- Statement from the Society for Endocrinology about the vaccine and endocrine conditions
- Why vaccination is safe and important
- When can I expect to receive my vaccination?
- Side effects – are they worse with one or other vaccine?
- What to expect after the vaccination
The vaccination priority list is as follows (more details can also be found here):
- residents in a care home for older adults and their carers
- all those 80 years of age and over and frontline health and social care workers
- all those 75 years of age and over
- all those 70 years of age and over and clinically extremely vulnerable individuals – and now also people having active cancer treatment as well as many in follow-up [see also footnote 1 on click above]
- all those 65 years of age and over
- all individuals aged 16 years [see also footnote 2 via link above] to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality [see also footnote 3 via link above – re same stage vaccination of unpaid carers]
- all those 60 years of age and over
- all those 55 years of age and over
- all those 50 years of age and over
All of the above groups should now have been invited for vaccination. If not, you may book your vaccination directly (if you fall within the groups above) via the NHS website. Keep an eye on the national news channels for changes/additions to this list.
Social Media: AMEND does not tolerate the spreading of misinformation on our social media channels. We reserve the right to remove any posts or comments that do so without notice, and to report and block any suspect accounts from our Pages or Groups.
The main symptoms of Coronavirus can include:
- A new, continuous cough
- A high temperature
- Muscle aches
- Gastric symptoms (e.g. Diarrhoea, pain)
- Nausea and/or vomiting
- Loss of, or change to, your sense of taste or smell
If you have any coronavirus symptoms:
Get a test and stay at home (this includes children)
If you have 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]
If you are Receiving Cancer Treatment
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
About COVID-19 and Endocrine Diseases
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)
Shielding (Clinically Extremely Vulnerable):
Those who were identified as extremely vulnerable and at the highest risk level for complications due to COVID-19, are held on a list by the NHS. This list may be updated from time to time based on ongoing research.
Please click here for the 2021 guidance on shielding [external link]
View the full, current list of high risks and advice here [external link]
Other Worrying Health Problems?
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.
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
- 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.
I have had Coronavirus. How can I help research?
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.
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.
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.
How AMEND can help if you're struggling emotionally
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)
AMEND USA Resources
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.
Prof John Newell-Price Talks About COVID-19 and NETs/MEN
Prof Wiebke Arlt Talks About COVID-19 and ACC
General Advice and Information
Local level measures are likely to be brought in again after the national lockdown:
- NHS England (Local alert level info)
- NHS Wales (Local alert level info)
- NHS Scotland (Lockdown info)
- NHS Northern Ireland (Local Lockdown Info)
- UK Government Coronavirus website
- World Health Organisation Coronavirus website
- BBC News Coronavirus webpage
Advice Specific to People with Long-term (Underlying) Medical Conditions:
If you’re identified as being extremely vulnerable and at the highest risk level, you will be on a list that is held by the NHS who will contact you if you need to self-isolate (shield) at any time.
- BBC Advice for People With Health Conditions
- Society for Endocrinology Advice for people with adrenal or pituitary insufficiency (taking corticosteroids for pituitary or adrenal problems) [PDF download]
- Steroid Dependent Patient UK Emergency Card download (complete and keep)
- British Thyroid Association and Society for Endocrinology Statement for patients with Thyroid Cancer [PDF Download]
- One Cancer Voice Advice for People with Cancer [PDF download]
- Diabetes UK [external link]
- European Society for Medical Oncology (ESMO) information for people with cancer [external link]
Fact-Checking of the Media:
- Get Legally Speaking – podcasts of UK lawyers answering questions (from employment to marital queries, including COVID-19 related issues)
- COVID-19 Scam Checker – Find out about coronavirus scams and how to avoid them (US-based site)
- 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.
- Relationship help: The Citizen’s Advice Bureau have reported that web searches about divorce peak on a Sunday. Overall, the divorce rate is soaring above average during the pandemic. There are many reasons why this might be happening, but many believe that the length of time we’ve been spending together in close proximity is probably the reason. Here are some useful resources:
- Financial Help: For members of AMEND, ACC Support and Phaeo Para Support, our Hardship Fund may be of use to you. In addition, 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.
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