On the surface, you should see little change in AMEND’s services.  Jo and Helen are mainly working from home, but also taking it in turns to pop into the office once or twice a week to send out membership packs or use the great WIFI!

• The 2020 Annual Patient Information Day was cancelled.  The 2021 event will be held in London on Saturday 8th May, 2021 – you can already register.
• Regional Patient Events are currently happening via online webinar rather than in person.  You can attend any of these, no matter where you live.  Click here to find out more.
• All fundraisers have so far either been cancelled or postponed (such as the London Marathon).  There are other ideas about how you can support the work of AMEND here.  If you want to undertake a ‘back garden challenge’, you can still find the resources you need here.  We’d love to hear about your activities!
• Social Media Accounts continue to run as normal
• The Counselling Service is running as normal.  Kym and David are there to help you manage any anxieties you may have during this unprecedented and worrying time.
• We are still contactable via phone (Jo – 01892 516076; Helen – 01892 841032) and by email.  Please be aware that we are not qualified to give out medical advice and that our Medical Advisory Team may not be able to answer queries, since many (if not all) will be busy helping with the COVID-19 efforts in their hospitals.

At this point we are signing over to the BBC who cover the daily briefing.

Monday 11 May (a.m.)

Government’s ‘Plan to Rebuild’ is published.  Lockdown measures DO NOT begin to change at all (in England) until Wednesday 13 May.  They are not due to change yet in Wales, Scotland and NI.   Excerpt from Plan regarding vulnerable people:

“Protecting the clinically vulnerable
It remains the case that some people are more clinically vulnerable to COVID-19 than others.
These include those aged over 70, those with specific chronic pre-existing conditions and pregnant women. These clinically vulnerable people should continue to take particular care to
minimise contact with others outside their households, but do not need to be shielded.
Those in the clinically extremely vulnerable group are strongly advised to stay at home at all
times and avoid any face-to-face contact; this is called ‘shielding’. It means not leaving the
house or attending gatherings at all, with very limited exceptions.”

Sunday 10 May

UK PM makes a statement to indicate that lock-down restrictions will start being relaxed gradually starting on Wednesday 13 May, when people who cannot work from home (i.e. construction workers) can go to work provided that their workplace can guarantee social distancing.  People going to work are advised NOT to use public transport (nb: report of 11/05 states that face masks should be used on public transport).

Monday 4 May

The Test, Track & Trace app will start to be piloted from 5 May on the Isle of Wight (starting with Health Professionals before expanding to other residents later in the week).  The app aims to help to reduce the number of new cases.  Fewer than 100,000 tests ‘done’ for the 2nd day running.

Friday 1 May

NHS fertility services to be restored.  Matt Hancock states that over 120,000 tests had been performed by the end of April.  There are 5 tests that need to be fulfilled before any relaxation of lock-down can begin:

Tuesday 28 April

Coronavirus testing to be expanded to anyone in the community with symptoms who is required to leave home for work, and to those with symptoms in households where there is someone aged over 65 living.

Wednesday 22 April

Government says that there is a great risk of a 2nd spike in cases if lock-down is lifted now.  There has been a serious spike in deaths in care homes, although these are still not recorded in the daily total of deaths (currently on from hospitals).

Thursday 16 April

Government confirms that the lock-down will continue for at least the next three weeks.

Thursday 9 April

Government stresses the need to STAY HOME this coming Easter long weekend to save lives and protect the NHS.  Not yet reached the peak of the UK epidemic.

Wednesday 8 April

Government promises some help for charities involved in healthcare and supporting vulnerable groups.

Monday 6 April

Government is still repatriating UK citizens from overseas.  NHS still expect cases of virus infection to increase although there are signs that the stay-at-home policy is working.  CMO emphasised that we still don’t know exactly when the peak will be so this policy continues for now.

Friday 3 April

NHS Nightingale Hospital opens in London with 4,000 beds for COVID-19 patients.  Field hospitals announced for Bristol and Harrogate.  People warned not to relax social distancing this weekend during predicted good weather.  Stay home, stay safe, protect the NHS, save lives.

Thursday 2 April

Extra funding (£300m) pledged to community pharmacies to meet the demand for medicines, and to NHS Trusts to write-off debts of £13.4bn.  Recent shipping of 45m pieces of Personal Protection Equipment (PPE) along with new guidelines to NHS staff.  Promise of 100,000 COVID-19 virus and antibody tests per day by end of April, starting with critical NHS workers and their families, through to key workers, then to the public.

Wednesday 1 April

Wimbledon Tennis Tournament latest in long line of public events that has been cancelled, including Glastonbury Music Festival and the Edinburgh Festival.

Friday 27 March

NEC and MCCC to be converted into Nightingale Hospitals along with EXCEL London.  PM, Health Secretary and CMO all have Coronavirus.  NHS staff testing being rolled out next week.

Thursday 26 March

Coughing deliberately at key workers and claiming to have COVID-19 becomes a crime punishable by a maximum of 2 years in prison.  New self-employed income grant for next 3 months at least (80% income up to £2500pm).  Conditions apply and may not be up and running until June – check HMRC over next day or so.

Wednesday 25 March

Over 400,000 people volunteer to help the NHS cope with Coronavirus (including retired health professionals).  Tests to detect if someone has had the virus still be evaluated and will be rolled out to NHS staff first.

Tuesday 24 March 2020

Student nurses and retired medics asked to help the NHS with the Coronavirus impact.

Monday 23 March 2020

Prime Minister, Boris Johnson, addresses the nation to ask that everyone stay at home and that non-essential businesses close to avoid over-whelming the NHS.  General public allowed to leave house only to do essential shopping for food or medicines, and to exercise outside property once a day if necessary (walking, running and cycling only).  DO NOT leave your home at all if you have symptoms or you are high risk and have been contacted by the NHS (by 29 March) and asked to self-isolate for 12 weeks.  Full details here.

Sunday 22 March 2020

‘Shielding measures’ introduced: NHS identifying highest risk patients who will be contacted over coming days and asked to self-isolate for 12 weeks (some respiratory, cancer, immuno-suppressed and transplant patients will be included).  Food and medicine supplies will be organised for these people (check links below).

Saturday 21 March 2020

No significant update.  Many shops and businesses to close.  National Trust closing their parks and gardens due to crowds making social distancing impossible.  General public strongly encouraged to stay home.

Friday 20 March 2020

Cafes, bars, pubs and restaurants to close tonight to sit-in diners (take-outs unaffected).  Gyms and leisure centres, nightclubs, cinemas and theatres too.  This applies to England, Scotland, Ireland and Wales.  Government to help pay wages through grant scheme for workers temporarily laid off or in furlough, back-dated to 1 March in addition to provision of business support loans, now available interest free for 12 months.

Thursday 19 March 2020

No significant updates today.  Keep washing those hands and practice social-distancing or isolation.  See links below for full information and guidance.

Wednesday 18 March 2020

Schools and nurseries will close on Friday evening (20th March) until further notice (except for children of essential workers, e.g. NHS staff and emergency workers) and exams cancelled.  Ban on evictions by landlords to be brought in for 3 months.  Society for Endocrinology updates it’s advice to steroid dependent patients.

Tuesday 17 March 2020

All non-urgent operations in England to be postponed (excluding cancer surgery).  Indication that people taking ibuprofen should change to taking paracetamol as former may have adverse effect on severity of the virus.  FCO advises British nationals to avoid all non-essential foreign travel for next 30 days.

Monday 16 March 2020

Social Distancing in effect:  UK Government recommends that all people who can work from home should do so.  Travel should be limited to essential travel only.  People to avoid pubs, clubs, theatres, cinemas, etc.

If you’re identified as being extremely vulnerable and at the highest risk level, you should have been contacted by the NHS and asked to self-isolate for 12 weeks.  If you have not been contacted but believe you should be, click here to register for help, or call the helpline  on 0800 0288327.

People with MEN syndromes, SDH 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

If you believe that you are high risk and need to ask your employer to let you work from home you can get an Isolation Note here.

The NHS are aiming to launch a Digital Contact Tracing App in mid-May (now June, maybe).  This may be helpful in notifying you if you may have been in close contact with someone who is later found to have the virus.   Click here to find out more.

There is currently no data on how coronavirus will affect anyone with MEN syndromes, SDH 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 questionnaire for people with MEN who HAVE HAD COVID-19 and will be sharing results from this from time to time on this page.

The NHS are aiming to launch a Digital Contact Tracing App in mid-May (now June, maybe).  This may be helpful in notifying you if you may have been in close contact with someone who is later found to have the virus.  Click here to find out more.

If you’re identified as being extremely vulnerable and at the highest risk level, you should have been contacted by the NHS and asked to self-isolate for 12 weeks.  If you have not been contacted but believe you should be, click here to register for help, or call the helpline  on 0800 0288327 .

MEN syndromes, SDH 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 now is to STAY AT HOME as much as possible unless you are an essential worker or cannot work from home.  If you are high risk and need to ask your employer to let you work from home you can get an Isolation Note here.

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 a few weeks and that you have someone who can deliver anything else to your front door

The current edict from the UK government is:

• STAY AT HOME as much as possible
• you can exercise outside as much as you wish
• go to work if you cannot work from home (if you’re employer has made it safe to do so), but try not to use public transport
• Definitely DO NOT go out if you have symptoms
• try to minimise trips for essential supplies (food/medicine)

Even when self-isolating:

• wash your hands regularly with soap, and
• do not touch your face

If you’re identified as being extremely vulnerable and at the highest risk level, you should have been contacted by the NHS and asked to self-isolate for 12 weeks.  If you have not been contacted but believe you should be, click here to register for help, or call the helpline  on 0800 0288327.

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 a minimum of 7 days immediately (longer if you still have symptoms after this time).

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.  Testing for the virus in the community is currently being offered to anyone aged over 5 years (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

The NHS will be launching a Digital Contact Tracing App in mid-May (now June, maybe).  This will be helpful in notifying you if you may have been in close contact with someone who is later found to have the virus.  This will be important as we approach the relaxing of Lock-Down in order to prevent a second wave of the virus appearing later in the year.  Click here to find out more.

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.

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)

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

The C-19 ZOE app has been launched in the UK as a daily COVID-19 Symptom Tracker.  This can be used daily (takes 1 minute) even if you feel well.  Click here for more information.

The NHS will be launching a Digital Contact Tracing App in mid-May.  This will be helpful in notifying you if you may have been in close contact with someone who is later found to have the virus.  This will be important as we approach the relaxing of Lock-Down in order to prevent a second wave of the virus appearing later in the year.  Click here to find out more.

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