BBSUK

COVID-19 UPDATE 07/11/20: The Government has introduced new national restrictions which means that from 5th November until Wednesday 2nd December we must all stay at home and avoid meeting people we do not live with, except for specific purposes. Schools and certain businesses will remain open. 

Individuals who are clinically extremely vulnerable are again being advised to ‘shield’ for the four week period and additional advice for this group can be found via this https://bbsuk.org.uk/coronavirus-information/advice-for-the-extremely-vulnerable/  

We understand the additional anxiety this will cause within our community.  We have had some conversations with our clinics team and would like to share the following in the hope that it may help with individual decision-making. 

Children and young people: 

  • Children and young people are not being adversely affected by COVID-19, including those with underlying health conditions.  Even those with significant underlying conditions are coping well with the virus.  This is why young patients with BBS, who are generally well, are not being asked by the BBS clinics team to shield.  
  • Some  children and young people who have BBS and who are clinically extremely vulnerable, may be advised by their doctor/hospital team to shield and not to attend school for this ‘lockdown’ period. Doctors will be reviewing whether children in their care are still at highest risk, based on the most recent evidence available and some parents may already have been told by their doctor that they do not need to shield. 
  • Parents who have not heard already from their child’s hospital doctor or GP, and feel their child may be in the clinically extremely vulnerable group, should contact their hospital team, (for example renal or respiratory team) or GP for advice.

Adult patients:  

  • During the first wave, there was little knowledge about the virus and how it might affect someone with BBS, so much of our community were advised to shield as a precautionary measure.  BBS in itself is not now considered to be an additional risk factor, and so those with the Syndrome who are otherwise well, and who do not have any of the conditions listed in the clinically extremely vulnerable group will not be asked to shield, however they are advised to take extra care to follow the rules and minimise contact with others. 
  • There may be some members of our community who may fall within the clinically extremely vulnerable group, (i.e. dialysis, post-transplant, chronic kidney disease stage 5 or severe respiratory disease) who may be asked by their GP or hospital team to shield; if any of our members have concerns in this respect, they should contact their hospital team, (for example renal or respiratory team) or GP for advice. 

With COVID-19 case numbers rising rapidly across the whole of the UK, we urge all our members to be especially careful to follow the rules and minimise contact with others, to wear face coverings and to wash hands carefully and frequently.  Information about the new national restrictions from 5th November can be found via the following link: https://www.gov.uk/guidance/new-national-restrictions-from-5-november#national-restrictions-from-5-november 

EasyRead information about how to take extra care can be found via the following link: https://assets.publishing.service.gov.uk/.../Easy_Read... 

Facing further restrictions so soon into the winter season will no doubt be causing stress and anxiety within our community and we are going to need to support each other more than ever; rest assured, as a charity, we will be looking at ways we can strengthen the support of our membership through the coming weeks and months.  However, for now we should remember that we have all faced and coped with difficult times and uncertainty in the past and have already come through a lockdown this year – we have grown in resilience and have strengthened as a community and we will get through this together. 

What is Covid-19?

Advice about the symptoms of Covid-19 as well as some video guidance.

Advice for those that are clinically (& extremely) vulnerable

Guidance for those confirmed as extremely vulnerable & what to do if you fall into this category.

What to do if you have Covid-19 symptoms

Step by step instructions on how to seek help if you display symptoms

Government Advice

Summary of the latest advice and relevant links to Government website

Emotional well being

Advice from BBS Clinical Psychologists

Healthy eating and exercise

Advice from a BBS Dietitian