Coronavirus: Families Of Sussex Children With Tracheostomies Falling Through The Cracks

As many students return to schools and colleges, families of children with tracheostomies in Sussex face a potentially much longer wait before their sons and daughters can return to education.

Current guidelines from Public Health England in response to the coronavirus pandemic have stopped children - who ordinarily would attend an educational setting - from attending school.

Due to the nature of a tracheostomy - an opening in the neck containing a tube into a person's windpipe which allows air to enter the lungs - certain guidelines have been created to curtail the risk of COVID-19 transmission and infection.

Speaking to More Radio, Kate, a mother of a child in Sussex with a tracheostomy, said:

"My 5 year old son and many thousands of his peers living with a tracheostomy have been unable to return to school due to the ludicrous guidelines set out by PHE - which many schools are unable to facilitate! 

"These guidelines not only make children with tracheostomies appear as lepers, they discriminate and seperate them from their peers when realistically they are of no greater risk to spread Covid-19 than any other child." 

The main 'risk' is caused by a procedure called 'suctioning', which clears mucus and debris from the tracheostomy, and is vital to allow unrestricted breathing. 

Suctioning is classed as an AGP (an aerosol-generating procedure), meaning that certain guidelines must be followed.

PHE requires that the procedure takes place only in an isolated room, which must be ventilated for up to an hour after the procedure, and that the person conducting the procedure - which may have to be done at a moment's notice - be dressed in full PPE.

These guidelines have, according to several groups of parents who have spoken to More Radio, created issues that have been extremely difficult for them - and their children's schools - to overcome.

This has prompted a group of family members to start a petition campaigning for a reassessment.

Kate said:

"The lifesaving procedure that many children with a tracheostomy need frequently to clear their airway (suctioning), is of no greater risk to spread Covid-19 than any other child who may cough /sneeze and not cover their nose and mouth (as many young children or those with SEN are unable to do).

"In fact, it is safer with specific bits of equipment in place which ensure the tracheostomy is not uncovered." 

Due to the stringency of these procedures, despite best efforts, many schools cannot stretch their resources to provide an adequate and safe setting for children with tracheostomies.

If this is the case, the children simply cannot attend.

Kate added:

"PHE MUST update these guidelines URGENTLY to enable schools to practically get these children back to school! 

"Many schools are overcrowded and do not have 'designated empty rooms' for a child to be suctioned in - a lifesaving procedure that usually needs to be done immediately, as does an emergency tracheostomy change. 

"The guidelines are also based on a child being asymptomatic with Covid-19, again most children with a tracheostomy also have respiratory difficulties and would therefore very likely to be symptomatic and too poorly to attend school anyway!"

In response, Public Health England said it fully appreciates these concerns and wants the best for these children.

A spokesperson said:

"It is a complex issue balancing multiple risks for the child, not least the disruption to their education and social contact with their friends with that of transmission of the virus.

"The guidance on aerosol-generating procedures in the community, including in schools, is urgently being looked into with input from several bodies.

"We want to ensure we do our best to support children, their families, and communities, with guidance that provides clarity, is pragmatic and takes into account the risks of transmission in different contexts."

On top of being unable to attend school due to the guidelines, many of the students involved also have additional educational needs, and have also been shielding for up to 28 weeks. 

Another parent, who wishes to remain anonymous, added:

"We are now on day 17 without school but he has been at home for 28 weeks due to shielding and the summer holidays, no respite, additional provision or extra support has been offered.

"Because of his tracheostomy, he requires 24/7 care, which means someone needs to be with him at all times and awake during the night to take care of his needs.

"The local authority at first promised that they would be back in time for term starting, then it was before the end of September, now they are talking of after October half term."

The petition, which has been set up by the parents affected, not only claims that their children are missing out on their education and routine, but also that they are suffering financially.

Due to childcare reasons and the need for their child to be attended by someone fully trained at all times the families are spending extra time out of work when their children would normally be in school.

An anonymous parent added:

"I have written to everyone from the local authority, to Public Health England, to the department for Education, and keep getting told there is nothing they can do while the current guidelines are in place and that their hands are tied.

"As well as his medical needs my son has severe learning difficulties and severe autism, he needs routines and the longer he is at home the more his separation anxiety is becoming an issue, his OCD behaviours are also going into overdrive."

"I believe that this is the worse type of discrimination wrapped up in health and safety based on outdated guidelines from public health England.

"I’ve even had a letter from them admitting they aren’t fit for purpose and promising that they are working on it, but as we can see no progress has been made."

Professor Viv Bennett, Chief Nurse and Director Maternity and Early Years at Public Health England, added:

“We want all children to be able to safely get back to school, recognising it is essential for their education and wellbeing. PHE is working with clinical experts and leading bodies to ensure the guidance is in place as soon as possible to enable children who need tracheostomy suctioning as part of their care to be able to safely return to the classroom.”