Covid-19

**Listen again**

The COVID-19 Vaccine and Inherited Metabolic Disease: What You Need to Know webinar

Following on from the latest webinar hosted by the LSD Collaborative, Metabolic Support UK and the BIMDG (British Inherited Metabolic Disease Group) 

This meeting was chaired by Neiman Pick UK Chairman Will Evans with information presented by Elaine Murphy, Uma Ramaswami and Gauri Krishna on the following topics (to include BAME concerns and vaccinating children / young people):

  1. General information and some statistics
  2. Addressing misconceptions and social media myths
  3. Having your vaccination in a residential care setting

To listen to the recording of this webinar, first hosted on 4th February CLICK HERE

Latest information for clinically extremely vulnerable adults and children

The British Inherited Metabolic Disease Group (BIMDG) and Royal College of Paediatrics and Child Health have issued guidence on how clinically extremely vulnerable (CEV) adults and children will be assessed during lockdown.

In addition, guidance for people on the Clinically Extremely Vulnerable (CEV) list in Tier 4 areas has been updated. Currently people on the CEV list in Tier 4 areas are now advised to follow shielding advice.

The shielding advice is the same that has been issued previously – full details can be found here: https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19 

No other areas are currently advised to shield – just to follow the general advice specific to their tier. To find out which tier you are in, visit: https://www.gov.uk/find-coronavirus-local-restrictions

Useful support links:

Government guidence on Coronavirus

The Government have issued new guidence on shielding for people, including children, who are at very high risk of severe illness from coronavirus (COVID-19) because of an underlying health condition, and for their family, friends and carers. They are strongly advising people with serious underlying health conditions which put them at very high risk of severe illness from coronavirus (COVID-19) to rigorously follow shielding measures in order to keep themselves safe.

Information for families in Wales, Northern Ireland and Scotland can also be found at:

Public Heath Wales: Phw.nhs.wales

Public Health Agency Northern Ireland: publichealth.hscni.net

Health Protection Scotland: hps.scot.nhs.uk

It is important for anyone that is unsure to contact their Specialist Clincial Team for further advice.

Second Inherited Metabolic Disease and Covid-19 webinar

Please click below to watch again the second webinar hosted in collaboration with the LSD Collaborative, Metabolic Support UK and BIMDG on Thursday 11th June.

Click here to watch webinar online

Latest update from Lloyds Pharmacy  Homecare 30th April 2020 

Lloyds Pharmacy have issued an update regarding the collection of sharp bins and medical devices. We understand that there has been some confusion amongst our patient community so want share what information is now available on their website.  The introduction of double bagging was introduced following concerns raised by patients seeking assurance that Lloyds were doing all they can to limit the potential spread contamination between households. They have also given reassurance that all collections are now happening as normal. If any patients are still having problems then they should inform their specialist centre so that they can monitor.

Website FAQs

Are LPCH going to be able to collect my sharps bin?

Yes. If your yellow or purple lidded sharps bin is filled to the recommended level and you require a collection please ask your driver to take the bin on your next planned delivery or alternatively, please contact us to book a collection.

Are LPCH able to collect medicines, medical devices or medical equipment?

LPCH will continue to make collections as required. Please contact Patient Services to book a collection.  

 Why are you double bagging or shrink-wrapping collections?

The process of double bagging or shrink-wrapping is introduced to all patient collections to reduce the chance of cross contamination between people and surfaces. This is a measure to protect yourself as well as drivers in reducing the chance of virus spread.

https://lpclinicalhomecare.co.uk/covid-19/#FAQS

Latest updates from UK Adult LSD Centres 24th April 2020

The UK adult LSD centres have all been working incredibly hard supporting and answering questions from patients and have produced a very useful advice / factsheet available to download below.  

Click here for UK Adult LSD updated advice sheet

During this difficult and unparalleled time, the Gauchers Associaton are still here to help, answer your questions or listen, you can contact our Patient & Family Support Worker, Claire by email on claire@gaucher.org.uk or telephone 07795 192311 or contact Sarah by email sarah@gaucher.org.uk telephone 01453 549231

Latest news 8th April 2020

We are aware that many of you may have received a text message or a letter from NHS England stating that due to being a Gaucher patient you are at high risk of contracting the COVID-19 virus (coronavirus) and should self-isolate for 12 weeks.

The initiative by NHS England is designed to protect those considered to be most vulnerable and at risk of severe illness if they contract COVID-19.  NHS England are contacting a large number of people across the UK (1.5 million in total) who they deem to fall into this group. Due to the need to distribute this information quickly, some people at risk may have been missed, and others who would not be considered most vulnerable, may have incorrectly received a message.

Each specialist centre is currently reviewing their patient lists to identify patients viewed as highly vulnerable and they will be in contact if this applies to you.

If, however,  you have already received a message, please make contact with your specialist centre team to discuss your individual situation and to confirm whether this advice applies to you.

During this difficult and unparalleled time, the Gauchers Associaton are still here to help, answer your questions or listen, you can contact our Patient & Family Support Worker, Claire by email on claire@gaucher.org.uk or telephone 07795 192311 or contact Sarah by email sarah@gaucher.org.uk telephone 01453 549231

Coronavirus (COVID-19) has been in the news since the outbreak began in Wuhan, China, at the end of December. This virus is now affecting people around the world, including the UK and is a source of concern for our community and many others. Although relatively small numbers of people in the UK have been affected, the number is growing and is likely to rise further. We know that there are specific groups of patients who may be more at risk, including those affected by Gaucher disease.

The following webinar focuses on how those affected by inherited metabolic diseases may be impacted by the recent coronavirus (COVID-19) outbreak: The webinar was organised by patient organisations working in the field of Inherited Metabolic Diseases (IMD), and was open to patients and families affected by IMD in a bid to address questions raised by the outbreak of novel coronavirus (COVID-19). We are pleased now to share the recording of the webinar, for those who were unable to attend:

Click here to watch the webinar online

Click here to view webinar slide deck

Click here for Paediatric clinical advise on  homecare and and clinical support

Click here for adult LSD clinical advise on  homecare and clinical support

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

NHS England and Shielding against COVID-19

Many of you may have received a text message or a letter from NHS England about shielding. Shielding is designed to protect those considered to be most vulnerable and at risk of severe illness if they contract coronavirus. 

NHSE are contacting a large list of patients (1.5 million) who they deem to fall into this group. Due to the need to distribute this information quickly, some patients may have been missed, and others who would not be considered most vulnerable, may have incorrectly received a message.

Each metabolic centre is currently reviewing their patient lists to identify patients viewed as highly vulnerable and they will be in contact if this applies to you.

If you have already received a message, please make contact with your metabolic team to discuss your individual situation and to confirm whether this advice applies to you.

What is Shielding and who needs it?

Find out who is in this 'highest-risk' group and what different advice they are receiving.

Click here to read more

Useful information on Coronavirus (COVID-19)

Find out everything you need to know about preventing, isolating and treating coronavirus and COVID-19.

Click here to read more

Advice for patients, parents and guardians on inherited metabolic disease and Coronavirus (COVID-19)

Following queries from our community on COVID-19 please find some practical general information and links in this document provided by the British Inherited Metabolic Disease Group (BIMDG), Metabolic Support UK and patient organisations in the LSD Collaborative, including the Gauchers Association.

Download the PDF here

During this difficult and unparalleled time, the Gauchers Associaton are still here to help, answer your questions or listen, you can contact our Patient & Family Support Worker, Claire by email on claire@gaucher.org.uk or telephone 07795 192311 or contact the team by email ga@gaucher.org.uk telephone 01453 549231