Below are links to websites providing covid updates, information and resources. Although many guideline are no longer applicable we felt it was important to provide a means of accessing previous covid information. We will continue to update this page if further changes or updates are announced. If you have any questions or concerns, please contact info@alextlc.org
Last updated (13.11.2023) This guidance is for everyone in England who has been identified as clinically extremely vulnerable from coronavirus (COVID-19). This includes those people who have been identified by the NHS as being clinically extremely vulnerable and those identified through the COVID-19 population risk assessment. All of those identified have been added to the Shielded Patient List, and more information on the criteria used is available below. If you have been identified as being clinically extremely vulnerable, you will previously have received a letter from the NHS or from your GP telling you this. You may also have been advised to shield in the past.
View guidance here : Guidance on shielding and protecting extremely vulnerable
MetabERN (European Reference Network for Hereditary Metabolic Disorders) recommends that individuals with an Inherited Metabolic Disease (IMD) should get the Covid-19 Vaccination.
See website for further information: COVID-19 Recommendations for all Rare IMD Patients and Caregivers – MetabERN
Many of you within our community are being offered the Covid-19 vaccine. Although it is an exciting time for many there are others that feel uncertain about the processes involved in developing vaccines. We wanted to share with you several resources from an organisation called Valuing Vaccines run by The Association of the British Pharmaceutical Industry (ABPI). They have developed several presentations explaining how vaccines are manufactured for safety and effectiveness. They also discuss how the covid vaccine was developed so quickly.
To watch, visit: How are vaccines researched and manufactured?
The Addison’s Disease Self-Help Group (ADSHG) have published a coronavirus vulnerable adult advice statement for those with Addison’s Disease, including information about priority groups and medication advice. To view the resource, click here.
Prime Minister’s announcement on Monday 22nd February 2021, where he laid out the Government’s new plan to Parliament to ease COVID-19 restrictions in the coming weeks and months. Full details of the plan can be found here, and the PM’s statement here.
In a move away from the tiered system, the Government’s aim is that by “cautiously” lifting restrictions nationally over the next four months, England will be out of the vast majority of legal restrictions by the end of June (bar the possibility of localised restrictions to contain new variants)
The plan announces four tests that must be met in order to move through the four steps of restriction lifting. They are as follows:
A team of academics have published a Covid-19 Vaccine Communication Handbook, this is a practical guide for improving vaccine communication and fighting misinformation. To view the handbook, click here.
The Covid pandemic has affected how we lives our lives, including accessing services and how we socialise with others. This has taken a huge toll on our mental health and it’s vital that we seek support when need it. It’s important that we recognise the additional challenges that individuals affected by Leukodystrophies and their families face during this already difficult time. The Covid pandemic has impacted how many health care and support services are accessed and has restricted the support many individuals receive from family and friends.
There are organisations there to help support your mental health during this challenging time. Please find information below:
Samaritans 116 123
Saneline 0300 304 7000
Mental Health Matters
www.mhm.org.uk/helpline-webchat
Provide a helpline providing emotional support, advice and guidance. Please click link for phone numbers for different geographical areas
Mental Health Foundation
www.mentalhealth.org.uk/coronavirus
Guidance to help mental health during the coronavirus outbreak
Every Mind Matters
www.nhs.uk/oneyou/every-mind-matters
Providing information and advice about how to look after your mental health
Together for Short Lives
Download the Booklet PDF here
Together for Short lives have put together a Self-help booklet for parents with seriously ill children.