Keep up to date
The UK Government have a dedicated website for COVID-19 information https://www.gov.uk/coronavirus
You may be eligible to register for Governmental Coronavirus support if you fall into one of the ‘at risk’ groups –https://www.gov.uk/coronavirus-extremely-vulnerable
The Government advice currently is that shielding is not required.
COVID cases in your area.
There are a number of sources of local information, at various level.
Testing and regional information
In addition a number of organisations have information specifically targeted to those with particular health conditions:
WellChild – https://www.wellchild.org.uk
Asthma UK – https://www.asthma.org.uk/advice/triggers/coronavirus-covid-19/
Cystic Fibrosis Trust –https://www.cysticfibrosis.org.uk/news/cf-care-and-covid-19
British Lung Foundation –https://www.blf.org.uk/support-for-you/coronavirus
BLISS – https://www.bliss.org.uk/parents/support/coronavirus-covid-19-information
We will post here information relevant to families in our region. We also have a question & answer page where you can ask questions so that others might also benefit.
Please click on the article title to see in full….
Updated tracheostomy advice for children and schools
The key message is that care of the tracheostomy (including suctioning) can usually be carried out using simple protection for carers.
Shielding & Roadmap out of lockdown & Immunisation
Shielding We are aware that some children will have received a further letter informing them that they should extend shielding until 31st March. This will be incorrect for many children with respiratory conditions who receive this letter as this list originates from the first lockdown and period of shielding (when all children with respiratory conditions…
Wellbeing for parents
For parents who have or have had a child in hospital, or with a long term condition
We are aware that many children in our region have been invited for vaccination. This has been as a result of an administrative error and the statement from the CCG can be found here The RCPCH and JCVI Green Book has very clear guidance about children and COVID vaccination: The only other group identified by the Joint…
Back to school?
There have been a number of documents released over the last few weeks relating to the return to school for all children. There has also been some guidance for schools regarding managing the care requirements of children with additional health needs, in particular those who require ‘aerosol-generating procedures’ (AGPs), including tracheostomy ventilation, in school. These…
UPDATED: COVID-19 Shielding advice for children receiving home ventilation (LTV)
The past few months for everyone have been a particularly challenging and worrying time. As parents and families of children who have an ongoing respiratory and ventilation need you have all done a fantastic job following the shielding advice and keeping you and your child fit and well. We are so pleased to say that…
Kaftrio for children with cystic fibrosis
Today the NHS confirmed that Kaftrio (or Tricafta in the US) will be available to prescribe in the UK for children (aged 12 years and older if they have the appropriate mutation) once it receives authorisation from the EMA. Further detail is here
Shielding, schools & “what now?”
With some children being invited back to school, uncertainty about what shielding is appropriate and for whom, many families are wondering what is the right thing to do for them and their children. The UK Government has updated it’s advice on shielding, however as with previous advice this does not manage the situation for children…
WellChild COVID-19 Direct Response Service
In response to the COVID-19 pandemic and WellChild’s recognition of some of the challenges vulnerable children and their families may be facing, we are offering a Direct Response Service to try and help you get the things you need. More information can be seen on their webpage – here
Rachel Gregory ‘meets’ Prince Harry
Rachel Gregory, funded through WellChild, is one of Nottingham Children’s Hospital’s Long Term Ventilation Clinical Nurse Specialists. Rachel joined families who are supported by WellChild so that The Duke of Sussex could hear of the challenges that families with vulnerable children are facing during the COVID emergency. You can read about this meeting here. She…
Practical help for those shielding
The NHS Volunteer service are able to offer practical help to those shielding – collect shopping/medicines, help with loneliness and patient transport. Families can self-refer via – https://www.goodsamapp.org/nhsreferral
Personal protective equipment
We addressed the recommendations for personal protective equipment in our recent letter to families of children who require home ventilation. However since this, Public Health England have updated their guidance – accessed here. It is summarised below: This was also covered in a recent Question on the Q&A page. Ask your question there too…
Letter from LTV team April
Letter to children who require home ventilation and their families
Looking after your wellbeing during the COVID emergency
This is a very stressful time, particularly for families with a child who has a health problem. In addition to the SHIELDING advice and advice for families of children requiring home ventilation, there are a number of resources that can be helpful: Guidance for parents and carers on supporting children and young people’s mental health…
Guidance and advice for families of children on home ventilation
SHIELDING Guidance for families, with a Child on Home Ventilation – After careful consideration ALL our families with a child on home ventilation are advised to follow shielding procedures from infection by Coronavirus 19 (COVID 19). This document gives comprehensive and up-to-date links to that advice and guidance. You will also find our contact details. Your…
Families requiring a doctors letter for nursery/school/employers
Please follow this link to request a letter for employers and schools
Government guidance on home care provision
The UK Government has provided guidance for home care provision.
The Government has issues guidance for people with certain health conditions. We have some reassurance that children do not appear to be severely affected by COVID-19. However it is important that we do all we can to reduce the risk of children requiring care in hospital. We would consider that children who have a…
CF letter to families 13th March
Letter sent to families of children with Cystic Fibrosis on 13th March
LTV letter to families
Letter sent to families of children and young people cared for by the LTV Home ventilation service – 16th March
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