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.
In addition a number of organisations have information specifically targeted to those with particular health conditions:
WellChild – https://www.wellchild.org.uk
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
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….
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. TheseContinue reading “Back to school?”
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 thatContinue reading “UPDATED: COVID-19 Shielding advice for children receiving home ventilation (LTV)”
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
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 childrenContinue reading “Shielding, schools & “what now?””
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, 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. SheContinue reading “Rachel Gregory ‘meets’ Prince Harry”
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 to children who require home ventilation and their families
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 healthContinue reading “Looking after your wellbeing during the COVID emergency”
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. YourContinue reading “Guidance and advice for families of children on home ventilation”
Please follow this link to request a letter for employers and schools
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 aContinue reading “Shielding guidance”
Letter sent to families of children with Cystic Fibrosis on 13th March
Letter sent to families of children and young people cared for by the LTV Home ventilation service – 16th March
Keep up to date….
Get new content delivered directly to your inbox.