We have noticed lots of concerns raised about hospital admission and patient advocacy during the times of COVID-19. To answer these concerns, we asked Dr Helen Simpson (Consultant Endocrinologist) and Professor John Wass to give their perspectives.

 

The answers below relate to the UK healthcare system. Please contact the local Addison's group in your country for advice suited to your locality.


Question 1 - Patient Advocacy: A key worry for many is patient advocacy. As there is a rule that patients are admitted alone and can have no visitors, what are the possibilities for advocacy from a family member, carer or medical professional with knowledge of the patients particular needs. What do you think is advisable and possible in the current climate please?​

Dr Simpson says:​

"It is really important to stress all hospitals are open as usual for unwell patients so if someone feels unwell, like they may be having a crisis they should go to their local hospital as they would usually. Intensive Care capacity has held up well as all hospitals have gone through a rapid transformation so no services are rationed. There are no automatic do not resuscitate orders and a lot of what is being written in the press is not true and increasing anxiety."​

Question 2 - What are patients permitted to take in with them into hospital? ​

Dr Simpson says:​

"They can take what they would normally. I would suggest taking their medication as needed. Take a summary of the EJE Clinical guidance so steroids are increased."​

Professor Wass says:​

"They should take in a copy of the article I prepared with Weibke Arlt about the management of glucocorticoids for surgical stress or illness*."

(Note: the ADSHG also recommends the guidance for clinicians we recently published.) 

"I would obviously recommend they take their hydrocortisone and fludrocortisone tablets into hospital, a lot of hospitals will allow self-administration. On no account should these tablets be taken away from them by medical staff. They should have the contact details of their endocrinologists. My patients often ring me when they are in hospitals if there is any problem going on. Certainly they should be in contact with a local endocrinologist who should be summoned whenever a patient with Addison's comes into hospital. The Society of Endocrinology has a list of all the lead endocrinologists in the country, so we know in England anyway which the lead endocrinologists are in each of the hospitals. The patient should contact their local consultant endocrinologist as most of them should have one of these or should contact the local endocrinologist as I say. "

Question 3 - What's the best route for carers and relatives to support those in their care whilst in hospital?​

Professor Wass says: 

"In COVID-19 times it is difficult for carers and other relatives so I would say the phone is essential."​

Dr Simpson says:​

"They should ask the team looking after them to contact the local endocrinology team or if there isn’t one the medical team on call. They should download the new emergency steroid card (the QR code has links to relevant information also) and ideally a copy of clinic letters with relevant information on them or take a photo and store that on their phone. Ward teams are more than happy to update families and carers at home. Many teams may have family liaison officers or similar. It’s uncertain times but we will all we can to help."

Support at home after your leave hospital:

Every hospital has its own hospital discharge policy. This guide from the NHS will help you understand how you'll be able to work with your healthcare team to plan what happens to you when you are discharged:​

You may need to follow more stringent isolation measures after a COVID-19 related stay in hospital. Your hospital team will inform you when you are ready to go home from hospital.

See the latest government advice for details:


Dr Simpson Says:

"Aim to wean down over a couple of weeks once better. This can be quicker or slower depending on how you feel."

The ACT Panel and the ADSHG would like to thank Dr Simpson and Professor Wass for their support and for giving up some of their valuable time to field our questions at this very busy time for the NHS. 

Take a look at our advice and articles about COVID-19 and keeping well.

ADSHG COVID-19 Advice

Preparing in case you need to go into hospital

Preparing a emergency Kit

Sick Day Rules

You may also be interested in our recent blog post about the experiences of an ADSHG going into hospital during the time of COVID-19:

Jennifer's hospital experience

The ACT Panel

This article was created by the ACT Panel (Adrenal Causes Together). The ACT Panel is a group of representatives from the world of endocrinology and adrenal causes from around the world. The ADSHG is a member of the ACT Panel and attends regular meetings of the panel (over video conference) to share knowledge on work on initiatives together to improve the lives of people with Adrenal Insufficiency.