Here you will find all news and blogs from CLDF regarding the Coronavirus.
Advice from the UK government and leading healthcare bodies is constantly changing, so please bear with us whilst we work on getting the most up-to-date and accurate information for you.
Updated BSPGHAN shielding guidance (Published 07 July 2020)| CLDF NEWS
We have been informed that BSPGHAN shielding guidance has been updated due to further evidence and review of the risk and impact on those children with a liver condition. Professionals are aware they have been quite strict with their patients so far. Read more.
Covid-19 and autoimmune liver disease study (Published 25 June 2020) | CLDF NEWS
The European Reference Network (Rare Liver) have developed an anonymous survey to understand how coronavirus has affected those with autoimmune liver conditions such as autoimmune hepatitis (AIH) and primary sclerosing cholangitis (PSC). Read more.
Coming out of shielding (Published 23 June, 2020) | CLDF NEWS
Shielding guidance was put into place to ensure that those most at risk of severe illness from coronavirus were protected. The daily number of new cases is at a much lower level which means the risk is minimal. Scientists believe that due to the negative impact of social isolation, personal economic stability, mental health and quality of life, it is proportionate to allow people to stop shielding soon.Read more about the end of shielding in all UK countries.
Review of the shielding categories (Published 17 June, 2020) | CLDF NEWS
As part of the initial response to the coronavirus outbreak thousands of children and young people with pre-existing medical conditions were advised to shield. Covid-19 was a completely new virus and professionals erred on the side of caution because of the lack of clinical evidence. Over time, we have learnt more about coronavirus and its impact on individuals. For this reason, specialists have now been able to adapt the shielding list as knowledge and experience has improved. Read more
Announcement of easing of shielding rules (Published 01 June, 2020) | CLDF NEWS
Over the weekend, the government announced sudden changes to the shielding guidance. Previously, they stated that those on the shielding list were strongly advised to stay at home at all times and avoid any face-to-face contact, until at least the end of June. As of Monday 1st June, the government have advised that those shielding are allowed outdoors. Please note at the time of writing, this only applies to England and Wales. Read more
Scotland, Northern Ireland and Wales Coronavirus Update (Published 22 May, 2020) | CLDF NEWS
CLDF is aware that the 4 nations in the UK have been announcing very different decisions about the easing of lockdown, making it difficult for people to keep track of the changes applicable to them. This week we have heard about plans for Scotland and Northern Ireland. In this article we have provided a short breakdown of the key areas our families and young people may need to be aware of. Read more
Hope for a COVID-19 vaccine (Published May 19, 2020) | CLDF NEWS
Those who have had organ transplants and are immunosuppressed have been placed in the extremely vulnerable to COVID-19 category by the government. Many parents and young people cannot work and are experiencing a significant loss of income, separation from family and friends, and anxieties around the impact on their children which can all lead to negative energy and thoughts. This often isn’t helped by news coverage and interviews which concentrate on what is going wrong. Read more
University Hospital Southampton immunoCOVID19 study (Published May 18, 2020) | RESEARCH NEWS
Study to monitor COVID-19 infections in children and young people who are immunosuppressed. Many families have expressed concerns about the impact coronavirus will have on their immunosuppressed children. There are a number of studies currently taking place to try and gather this data to enable professionals to give more informed advice. Read more
Current guidance on shielding and what next (Published May 15, 2020) | CLDF NEWS
Parents are understandably questioning the current guidance around shielding. This has arisen from the new ‘Our Plan to Rebuild’ guidance released by the UK Government and the lack of information provided within it in relation to shielding and what happens after this initial advisory shielding period ends. Read more
IMPaCCt Study – Investigating the impact of Covid-19 on caregivers and patients (Published May 13, 2020) | RESEARCH NEWS
Researchers at Queen’s University Belfast and University of Aberdeen are conducting an online international survey to gain an understanding of the impact Covid-19 is having on people with a rare disease and their caregivers. Share your experiences today. Read more
The impact of Covid-19 on organ donation and transplants (Published May 12, 2020) | CLDF NEWS
The Covid-19 pandemic has impacted the UK’s organ donation and transplantation services in two ways – it is even less likely that someone will be able to donate their organs when they die and there has been a significant reduction in the number of organ transplants taking place. Read more
Update regarding latest government guidance and shielding (Published May 12, 2020) | CLDF NEWS
Over the last few days there have been several announcements by both Westminster and the devolved governments about next steps in relation to Covid-19. Unfortunately, while a recovery strategy has been published by the Government, the guidance within this is not the same for all four home nations. This has understandably led to some confusion for UK residents and what guidance they should be following. Read more
CLDF statement regarding calls from medical professionals (Published April 3, 2020) | CLDF NEWS
We are aware that some parents of children in the extremely vulnerable group are receiving calls from GP surgeries and other medical professionals about Do Not Attempt Resuscitation (DNAR) forms. Read more
‘Coffee & Catch Up’ for Children and Families (Published April 3, 2020) | CLDF NEWS
Calling all CLDF parents and children!
On Thursday 9th April at 2pm we are holding our very first Coffee and Catch Up. This will be hosted by the Support team on Zoom and will be our very first virtual families meet up.
It will be your opportunity to catch up with friends or meet new liver families and chat about everything that has been happening lately. From being in lockdown and the impact on your lives to sharing ideas and resources for schooling your children at home. It will also be an opportunity to just see other parents and children who are going through very similar things at this time.
If you want to be join us then please e-mail us on email@example.com and we will send you an invite. To ensure that everyone who attends has the chance to get involved we are limiting it to 20 places so please get in touch now to book your place. Don’t worry if you miss out on this first one as we are planning to hold them on a regular basis.
So, get your coffee brewing and we can’t wait to see you all on Thursday!
Information for extremely vulnerable groups (Published March 23, 2020) | CLDF NEWS
On Saturday 21st March, Government have provided updated guidance for protecting people defined on medical grounds as extremely vulnerable to coronavirus (COVID-19). Those that fall into these categories are referred to as extremely vulnerable and should now be shielding for at least 12 weeks. Read more.
Coronavirus update for parents (Published March 18, 2020) | CLDF NEWS
The latest Government guidance advises those who are at increased risk of severe illness from coronavirus to be particularly stringent in fully following social distancing measures. Please read and follow all of the detailed guidance stated here. As far as we are concerned all the children and young people we exist to support would fall into this category. Read more.
Coming out of lockdown and shielding – how do we integrate back into a new world? (Published 3 July, 2020) | CLDF BLOGS
While coming out of shielding is something that everyone has been looking forward to, there are also a lot of fears and anxieties about how to adapt to this new world that you haven’t been around in many months. Here are some tips and advice on how to manage coming out of lockdown and shielding. Read more.
Your family’s emotional wellbeing and mental health (Published April 09, 2020) | CLDF BLOGS
Mental health is just as important as physical health during these unprecedented and uncertain times. In this blog, we provide advice and signposting on how to manage emotions and anxiety for the whole family. Read more.
Talking to your child about COVID-19 (Published March 27, 2020) | CLDF BLOGS
With all the uncertainty and mixed messages about coronavirus, it can be difficult explaining the situation to children with liver conditions, as they may have questions such as “why do I need to use a separate bathroom?” or “why are people staying away from me?” Read more.
Navigating a New World for Young People (Published March 25, 2020) | CLDF BLOGS
You have always had to consider things that other children/young people don’t. You will have experience of being very poorly from infections that wouldn’t have much effect on other children who don’t have a liver condition. So, it is even more essential to restrict your access to people who may have the virus and not know it because there is a risk that the virus will have more of an impact on those with an underlying health condition. Read more.
Coping with a new normal for families (Published March 24, 2020) | CLDF BLOGS
During this new way of living and working, it’s important to think about how coronavirus (COVID-19) will impact your family, those children with a chronic liver condition and those on immunosuppressant medication.
Here are some of things you need to think about during this time. Read more.