Category Archives: News

The key message is that care of the tracheostomy (including suctioning) can usually be carried out using simple protection for carers.

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 conditionsContinue reading “Shielding & Roadmap out of lockdown & Immunisation”

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 JointContinue reading “COVID Vaccination”

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”

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

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”