Shining a light on PIMS-TS
( Paediatric Multi-inflammatory Syndrome temporally associated with SARS-CoV-2 )
The truth is
Let’s get PIMS known!
This section will tell some much-needed truths, based on the experience and testimony of PIMS families. Their overriding wish is that by finding this website you will be better prepared to deal with PIMS should it affect your family.
Much of the narrative around lack of National Awareness of PIMS seems to be based on a fear of scaring the general public. This is patronising and counterproductive on all levels. Parents are their children’s primary care givers and when they are ill, are their first responders. Parents are not stupid. Parents need and deserve the truth, carefully expressed and easily accessible, to help them protect their children. As Professor Russell Viner, former president of the RCPCH, said: "What parents do need, however, is knowledge and understanding so they know what to look out for," and Dr Elizabeth Whittaker of Imperial College: "Early treatment and close monitoring is key to preventing severe outcomes."
But as government-led Public Awareness for PIMS has still not materialised, despite the lobbying efforts of our members and supporters, we have decided to do it ourselves on this website!
We would like to thank the following individual hospitals for taking the initiative and adding PIMS information to their websites, creating awareness through the national press and their continuing support of smaller regional hospitals with PIMS diagnosis and treatment:
Evelina, Great Ormand Street, Royal Brompton and Harefield. Thanks also to Liz Whittaker from ICL for her press updates.
Also to Healthcare providers and advisory bodies, including the Institute of Health Visiting, Wessex Heathier Together and RCPCH. Thank you to all our partners - Long Covid Kids, CircumSTANCE, Familles des enfants victimes du PIMS COVID (Association nationale),
Thank you to NICE, who have added PIMS-TS to their search engine, and PICANet for sharing Paediatric Intensive Care data. Also thank you to @TigressEllie for sharing child hospitalisation data on Twitter and @jneill for creating data graphs for us. Thank you to Joanne McBride for creating infographics. Also South Thames Paediatric Network @thames_south for their PIMS awareness tweets.
Links to these organisations can be found on our Links page
If you know of any other online sources of PIMS information, please let us know us at info@PIMS-hub.co.uk and we can add them to our list.
If you are involved with an organisation or charity that would like to include PIMS information on your site or be linked to our website or vice versa, please email us.
WHY THIS IS NOT ENOUGH
The online information about PIMS-TS from the organisations listed above relies on people being aware of the term PIMS in order to search for information about it.
- It does not help the majority of families who enter the PIMS journey having never heard of it.
- It does not help the individual medics who have not been privy to the NICE guidelines or the RCPCH protocols.
- It does not help with prompt diagnosis and treatment of PIMS.
- It does not help prevent long term health changes to children which will require ongoing NHS support.
LET'S GET PIMS KNOWN!
Parent knowledge + Medic knowledge = Prompt diagnosis = Better outcomes for children
National awareness is key
OPINION The Government are hiding behind the word 'rare'. So is PIMS a rare disease?
The formal definition of a rare disease in the UK is one which less than 1 in 2,000 of the total population suffer from. Rare diseases include those involving infectious or immune system etiology.
The following example in no way seeks to detract from any other rare disease, its sufferers, or its supporters.
Many of us have heard of Meningitis. Many of us know that it usually involves a rash which doesn’t disappear if pressed with a glass, plus a stiff neck, headache, and aversion to light and that it can be very dangerous and requires urgent medical attention.
Why do we know this?
Is it because it has been around for a long time?
Kawasaki Disease which is very similar to PIMS-TS, has been around for a long time, but have you heard of it, despite great efforts for many years by the KD family community and their representative bodies to get KD known?
Is it because it’s not rare?
Meningitis is classified as a “rare” disease, and its pre-pandemic case numbers for 2018-19 were 526 (less than the PIMS numbers of 790 quoted from May 2020-February 2021), and less for the average yearly numbers for Kawasaki Disease.
So why do we know what Meningitis is?
Meningitis is an infectious disease and therefore a notifiable condition. It also can be vaccinated against, and this primarily is what has bought it into public awareness, through national vaccination awareness campaigns. It, along with septicaemia and sepsis (not infectious, notifiable, or vaccinated against) were also part of a National Public Health Awareness campaign in 2016. So, there IS a mechanism for National Public Awareness campaigns.
Just because PIMS-TS is technically defined as rare doesn’t mean that no one needs to know about it. In fact, it is more important to know about it, as it will not be being seen so frequently by medics. It is also important to know about it right now, as it is directly linked to the COVID-19 pandemic and is happening right now. It may become less common when the pandemic diminishes at some stage in the future. We need Awareness right now!
The overall risk of PIMS-TS in children in the EU/EEA and the UK is considered low, based on a very low probability of incidence of PIMS-TS in children but a high impact of such disease. (European Centre for Disease Prevention and Control: Rapid Risk Assessment, May 2020)
The rare diseases framework, updated in January 2021 is very interesting. Its charter covers nearly everything we, the PIMS community, need from central government to support us and the general public in getting PIMS known - namely, awareness, research and patient voice. As you can imagine, this is a lead we are actively following. Gov.uk/government/publications/uk-rare-diseases-framework
How you can help
Download awareness leaflets from the Evelina hospital website (see bottom of their page) and distribute to schools, GPs and parents.
Please tell all your friends and family about PIMS, this website, our Facebook group and follow us on Twitter.
Sign and share our Petition.
Help us raise awareness by sharing these infographics - Right-click/tap, then Save Image As, Copy Image or Copy Image Link to save or share.
The government have been withholding public information on PIMS-TS. So why do we think this is?
Is it the fear of scaring parents, their own electorate, who put them in power to represent and inform them on all matters including children’s health?
Is it the knowing that by being transparent about the existence of PIMS-TS they will have to be more transparent and accountable for awareness and data, health repercussions and aftercare provision?
Is it that all along they have said that children do not get affected by COVID-19 and that because their minimal school mitigation policies and investment are based on this premise, that they would be exposed on this matter?
Is it that they think that there will be more pressure to vaccinate younger children to prevent PIMS-TS and that they are under pressure not to do this by some influential groups?
Letter 1. Letter written to Sajid Javid by a group admin asking for awareness and data for PIMS.
Letter 2. Sajid Javid's reply to a group admin apparently under the impression that PIMS is Long COVID.
Letter 3. Multiple identical replies were received by group members from Maria Caulfield of the DHSC again mostly with reference to Long COVID, and inaccuracies in reference to PIMS-TS.
Letter 4. However, a PIMS member in Scotland received an appropriate and promising response from the chief executive of Public Health Scotland, who has asked NHS Inform to consider adding PIMS information to their web pages.
(Click each letter to enlarge and use back arrow to return)
Put children before politics!
Ask your MP why there is
- No mention of PIMS-TS at all on any of the Government Websites.
- No publicly available data on PIMS cases in the UK.
Please use information from this website to draw on.