Advice for Neurodisability Patients

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Neurodisability: COVID-19 advice for families

The message is for families of children and young people with disability who attend CHI Neurodisability services, for whom this may be an anxious time.  Access to your usual supports and routines will have been disrupted, so it may feel that it is harder to get help if and when you need it. For families whose children may experience infections or hospital stays more frequently, the prospect of COVID-19 may be worrying.

We hope the following guidance is of some assistance.

Your CHI Neurodisability Teams at Crumlin, Tallaght and Temple Street are still here for you; please contact your team with any concerns as you would have done previously.

There is a concern that some people may not be attending hospital when they should, out of fear regarding COVID-19. Please be reassured that if you need to attend hospital, your child will be looked after. All young people will be assessed individually to determine the best course of treatment- this has not changed in CHI because of COVID-19. We have robust infection control processes in place to help keep patients and staff as safe as we can and to protect against the spread of COVID-10 Currently, COVID-19 has not changed our patients' ability to access Paediatric Intensive Care Units (PICU) should they need it; decision are made on a case-by case basis as they were before.

The most important thing for families and household contacts of children and young people with disabilities to do is to follow the guidance of the HSE.

It's vitally important we all continue to practicing regular hand-washing/ sanitisation, physical and social distancing, cough and sneeze etiquette, further information is available on https://www2.hse.ie/coronavirus/  This will help to protect you and your children from COVID-19. Use whatever supports you have (e.g. home delivery services, friends and extended family) to reduce your risk of exposure at this time. Continue all prescribed medications and treatments unless advised otherwise.

Are young people with disabilities at increased risk with COVID-19?

We don't know for sure- this is a new virus, and we are still learning about it. There are reasons to be optimistic, however. In contrast to adults, very few children have been admitted to hospital with COVID-19 in Ireland so far. From what we see in other countries, it is clear that children tend to have much less severe illness than adults, even for children with disabilities or complex medical needs.

It may be the case that children and young people with disabilities which affect their breathing or lung health are at slightly higher risk of more serious illness than other children, should they become infected. The HSE currently advises that children who may be at risk of more serious illness with COVID-19 "be extra careful in watching out for symptoms, and strictly follow the advice on good hygiene and hand washing" as outlined here.

How should I talk to my child about COVID-19?

This free book, illustrated by the illustrator of The Gruffalo with medical input from Prof Graham Medley, answers question about coronavirus at a level appropriate to children with a developmental age of 5-9 years.

The British Psychological Society have this advice on talking to children about illness.

The Disabled Children's Partnership and Wellchild are UK organisations with good resources for families. Please remember to follow official HSE advice in relation to social distancing measures which are specific to Ireland.

The HSE published this illustrated guide for children on going to a test centre to have a swab taken.

Sheffield Children's Hospital prepared this Hibernation Pack on managing being cooped up indoors for an extended period of time.

Information on social welfare supports and COVID-19 are available here.

The NHS have prepared this video with advice on managing social distancing for families of children with autism and intellectual disabilities, including managing changes in routine.

The Association for Child and Adolescent Mental Health have produced a podcast for families of children with autism, available here

Advice on sleep problems from Evelina Children's Hospital. 

CHI at Crumlin COVID-19 Helpline

If you have a general query related to COVID-19, CHI at Crumlin have set up a helpline Monday – Friday 9am to 5pm on (01) 4096117.

We continue to advise families to seek medical care appropriately through the same channels as before (your GP, your emergency room, your clinical nurse specialist, your local hospital) and not to avoid or postpone review if concerned.

Stay Safe, Wash your Hands and Practice Social & Physical Distancing