The content on this page was last updated on the 28th March 2020
With Coronavirus (COVID-19) continuing to spread throughout the world and here in the UK, and us seeing an increase of people diagnosed, we want to ensure that we keep you informed of all relevant information.
Whilst our government continue to deliberate on a day to day basis, we want to share with you information from the UK hospitals that specialise in Hyperinsulinism as well as other information being shared internationally.
“There is no additional specific advice for patients with Hyperinsulinism and we advise managing illness as per your illness plan and hypo plan.
We are advising you to make decisions based on Government guidance plus your individual situation.”
All NHS Trusts will continue to release individual statements following the latest government advice, but please note these guidelines will change.
***Please ensure that you check the websites frequently as information continues to be updated.***
DEPARTMENT of EDUCATION:
PUBLIC HEALTH ENGLAND:
REPUBLIC of IRELAND:
Whilst we now know that the UK government have compiled a list of those deemed extremely vulnerable, it is still unclear where our children fit within those categories. So little has been mentioned about children with rare diseases, but we know that some may be classed in the “extremely vulnerable” category due to having other underlying health issues. This is the key point that you must consider.
Questions you may wish to consider are:
How does illness affect my HI child?
Are they more susceptible to blood glucose dropping?
How do I already manage illness in my child?
Do they take longer to recuperate?
Are they prone to chest infections or any other respiratory issues?
Are they taking immunosuppressants or prophylactic antibiotics?
Do they have other health conditions which can be a concern? (If your child is seen by other medical teams such as cardiac or respiratory for example, speak to those individual teams for further guidance).
Is there anyone else at home who has an underlying health problem?
Do you have a care plan in place for the main carer should they fall ill?
If your child is one of those allowed to continue to go to school, how will you travel and handover to minimise risk?
Will school have the usual teaching staff for your child? Will the changes be very distressing for my child?
Is anyone in my house a key worker?
What can I do to minimise risk when the key worker comes home?
Whilst we cannot offer any medical advice, we do urge you in the event of your child falling poorly, to always follow your child’s individual care/hypo plan and to contact your relevant healthcare professional should you need any further assistance and guidance.
You may also wish to consider adding additional lead times for ordering essential medications and feeds as well as any hypo treatments you may use.
The latest UK government advise is people with the most serious health conditions must avoid almost all social contact for 12 weeks and shielding letters will be sent out to those deemed to be in this category. If you have not received a letter and feel your child should have one, please contact your GP.
You should by now have heard from your child’s school as to what they have planned for your children, particularly for those of key workers. Our headteachers have a mammoth task on their hands to co-operate by Government guidance as well as ensuring that the health & safety needs are met of their staff and pupils who are able to attend. Please let them know whether your child has received a shielding letter as this will help them to staff appropriately.
As a parent/Carer you need to take care of yourselves too. Carers UK have some helpful information about looking after yourself with advise about having a contingency plan in place if you yourself become unwell.
Please note that scientists and professionals are still learning about this pandemic and because of very little data so far, it’s difficult to know how everyone will react to it. Everyday they are learning a little more so we can only be guided by the government and what common sense tells us. You are the best judge of your child’s health and that sometimes means going with your gut instinct. We know that you will always do what’s right for your child.
The pressure on our NHS and healthcare professionals is immense in this present climate and we are eternally grateful for all the support they continue to give to our families. Please be patient with them whilst they navigate their way through this difficult time and continue to give the best care they possibly can to all their patients.
We appreciate how difficult it is at this moment in time, but it is also giving us an opportunity to look around and appreciate the extra time we get to spend with our loved ones, whether that’s in the same household or more opportunities for video calling and telephone calls. Create memories, laugh, share books, have a mini disco, paint.....anything goes. We are being blessed with this time and our children will remember these moments for a lifetime. What an opportunity we have been gifted!!!
Be kind to one another, be kind to yourselves, have no expectations. You are all amazing!!
Michelle and Sarah
Co-Chairs and Trustees
The Children’s Hyperinsulinism Charity