Coronavirus Update

Coronavirus (COVID-19) News

The impact of coronavirus (or COVID-19) on our everyday lives is growing. Many people are self-isolating, schools are closing and ‘social distancing’ has become the new mantra for how we live our lives.

We do not know how long the virus will be with us, but our main priority remains supporting people and families living with growth conditions. We have put together this page with as much information as we can find, relating to the impact of COVID-19 on growth conditions.

We will add details here as we find them, but we cannot stress enough, that we are not a medical advice charity. We will gather information and we will talk to our medical advisors, but we are not a substitute for the existing specialists involved in your, or your child’s, care and support.

The first, and best, source for information about COVID-19 is the NHS website. Click the image to the right to be taken the COVID-19 page.

CGF Support

The Child Growth Foundation have three members of staff, all part-time, and all work from home. It means that our operating hours will remain unaffected by the Coronavirus for the foreseeable future.

We operate a telephone support line from 9-00am to 5-00pm five days per week. If there is no response, we may be temporarily away from our phones or on another call. In which case, please leave a message and we will get back to you.

You can also email us at: info@childgrowthfoundation.org

We also have a number of Facebook groups where you may be able to find more support.

Reliable Sources

It is very important to get information from reliable sources. There are many sources of reports; radio, television, internet, social media, press, etc. Some of this information can be incorrect and ‘fake news’. There are many reliable sources of information, which we would advise you to refer to:

NHS England

Department of Health and Social Care and Public Health England

NHS Scotland

Wales

Northern Ireland

Republic of Ireland

Remember the situation is changing, so keep up to date, using the sensible websites. Remember too that the situation varies around the world, so those living outside the UK, should refer to their local guidance.

 

Children’s Guide to Coronavirus

The Children’s Commissioner has developed a really handy guide to COVID-19 for children:

Children’s Guide to the Coronavirus

Advice for parents/caregivers of SRS/RSS children

March 30th 2020

A number of SRS Consensus Statement authors/specialists* have issued the following statement regarding COVID-19 and SRS/RSS children:

“RSS/SRS children should be at no additional risk of contracting COVID-19 compared to the general paediatric population. They may be at a higher risk for complications once they have contracted the virus if they have additional risk factors such as asthma, preemie lung disease, feeding failure or other medical conditions. It is extremely important to continue to follow the current SRS Consensus Statement recommendations for the treatment of illness in RSS/SRS children [or SGA children with large head-size-to-body]. Please refer to the SRS Consensus Statement and the “Emergency Treatment Guidelines” document provided herewith. In case of acute illness, treat quickly and do not be afraid to go to the paediatric emergency room even with this COVID-19 pandemic. Emergency care for these patients should not be delayed.”

Irène Netchine (France), I. Karen Temple (UK), Madeleine D. Harbison (USA), Gerhard Binder (Germany), Justin H. Davies (UK), Deborah J.G. Mackay (UK), Oluwakemi Lokulo-Sodipe (UK), Emma L. Wakeling UK), Thomas Eggermann (Germany)

RSS/SGA Emergency Treatment

There is an updated guide for Treatment of SRS for Emergency Responders, which will be useful to print off and have to hand:

SRS Emergency Treatment

BSPED statement on Glucocorticoid replacement and COVID-19 infections

24 Mar 2020

Children and young people who have hormone problems and in particular who are taking steroids (hydrocortisone, prednisolone, dexamethasone) because their adrenal glands do not work properly (steroid replacement therapy) are at no more risk of catching COVID-19 than other children.

However, it is very important that all medicines are given regularly and at the doses recommended by your doctor. Make sure you have got enough medicine at home, without stockpiling, and that you follow sick day rules if you /your child becomes unwell.

Further information is available at:

NHS: Covid-19

RCPCH: Covid-19

Growth Hormone Availability

We have been contacting the pharmaceutical companies for updates on the availability of various treatments. We will update here as we get news.

Tuesday 24th March

Merck Serono – Saizen

No problems with the stock of Saizen (somatropin) which is either dispensed via homecare or community pharmacy.
Regarding ancillaries, these are also dispensed via homecare and all clinical leads have been alerted to alternative routes for these ancillaries should patients not be able to get through to Homecare. The Freephone MySupport Saizen line will remain operational, the number for this is 0800 389 8060

Novo Nordisk – Norditropin

No problems with supplies of Nordiflex and have plenty of stock.
Patient information via website (mygrowthzone.co.uk)
Device training videos via website (mygrowthzone.co.uk)

For any further supply queries please contact your assigned delivery company:

Alcura UK Ltd
Alcura House, Caswell Road, Brackmills Industrial Estate, Northampton, NN4 7PU

Email: alcura.alcurapatientservices@nhs.net
Email: alcura.nordicarepatientservices@nhs.net

Please call the Alcura NordiCare® team on 01604 433540 if you have any questions.
Healthcare at Home
107 Station Street, Burton on Trent, Staffs DE14 1SZ

Email: novo@hah.co.uk
Please call the Healthcare at Home NordiCare® patient contact team on 0333 103 9879 if you have any queries.

Pfizer – Genotropin

Pfizer operates one of the most sophisticated supply chain systems in the industry with over 40 Pfizer-owned sites and over 200 suppliers globally, which provides capacity and redundancy as needed.

They are consistently and diligently monitoring the supply of their medicines. As a result of the Coronavirus outbreak, they have not seen any disruption in the supply chain or impact to their business. They have seen increased local demand for certain medicines in some places and are working with healthcare bodies to mitigate anticipated supply constraints. They will continue to monitor the situation and provide timely updates if there is any new information to be shared.

At this time, all of their plants in impacted areas around the world are operational. Those plants are running in compliance with government regulations and supported by colleagues whose physical presence is required to manufacture and supply products.

Pfizer have been experiencing difficulty with the supply of Genotropin, but this has nothing to do with the Coronavirus and was an ongoing issue prior to the outbreak. It is to do with manufacturing issues in Belgium. Pfizer have are working to resolve the issue and expect it to be sorted by April 20th and are working to bring that date forward.

Replacement Steroids

The Society for Endocrinology’s Clinical Committee have issued an advice statement with a summary to help keep adrenal insufficiency patients safe during the COVID-19 (Coronavirus) crisis.

Advice Statement

You can find more information on their web page: Society for Endocrinology

CGF Annual Convention

The 2020 CGF Annual Convention is some months away yet, and is due to start Friday 2nd October. At the moment, we fully anticipate, and hope, this will go ahead. It is very difficult to predict anything at the moment, so we are monitoring things very closely and will update here as and when we have any news.

Thank you for your understanding.

More to follow…

 

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