Last month the Foundation and Positive About Down Syndrome jointly released a survey for all individuals with Down’s syndrome in the UK, asking about their health and issues relating to the Covid-19 pandemic.   We are overwhelmed to report we had 901 responses from you all. Thank you!  We have collected a wealth of information that we feel strongly belongs to you, the community.  We will not use the data for our own benefit but ask you to consider donating to support this work, if you can.

“this data belongs to you, the community”

Our volunteers are processing the data and as we have worked through each section we will release a series of blogs discussing the results i.e. the health of school aged children, levels of co-morbidities (other diagnoses) there are and the impact on health as well as the impact on those with autism & ADHD, thyroid issues and other topics that emerge from the data.

In this post we will give an overview of who completed the survey and focus on the Covid-19 cases and the rates of general illness in the children & adults over the time period of the survey (Jan-April). We will focus on the health of school age children in the next post as we are mindful that schools are progressing towards reopening.

Who completed the survey?

In total 901 people (adults and children) are represented in the survey. The breakdown is:

Female 48.66% (437)
Male  51.34%. (461)

Ages:

How old is your child/adult with DS? Answered: 898

 

The Missing Groups

It is vital to note that as predicted getting sufficient adults in the survey proved very difficult- and those in care homes- nearly impossible.  So the survey will tell us more about the health of children.  Where possible we will try to compare within the age group as much as possible i.e. how many ill among one age range.

Regions:

 

Rates of illness over the 4 month period (Jan-Apr 2020) – 1st 1/3 of the year

Whilst reading this please keep in mind we are limited by the lack of testing as much as the rest of the UK population.  We can draw a few conclusions but must not assume for example all ‘illness’ = ‘Covid-19’

We asked you to tell us about the worst illness over this period, which obviously for some of you meant you had to choose from more than one episode so the data won’t tell us how many times the person got ill.   Also remember ‘ill’ is anything from sniffles to pneumonia needing admission.

Q How many didn’t get ill at all?

A Over half of people surveyed have not been ill during this time period (61%).  Those that did not get ill 74% did have pre-existing conditions (including 10% with lung damage).

Q How many got ill in that 4 months?

A Under half surveyed did have some episode of illness (39%)

Let’s talk about the people who got ill. What do we know about them?  We can see comparing within their age ranges that mainly infants and older adults had a bigger chance of reporting illness. ie. for the Infants 50 of 116 of them reported illness- 43%

Premature Newborns < 37 weeks gestational age–
5/12             41.6%
Term Newborns > 38 weeks gestational age
 3/6              50%
Neonate 0 – 30 days of age
 0/2              0%
Infant 1 month – 1 years
 50/116        43.1%
Young Child 2 – 6 years
 99/279        35.5%
Child 7 – 12 years
 83/226        36.7%
Adolescent 13 – 18 years
 43/127         33.9%
Adult 19 – 54 years
 32/122         26%
Older Adult 55+ years
4/8                50%
TOTAL 319/898

 

In future posts we will analyse the rates of pre-existing conditions in those who got ill and the types of conditions our community have most and least.  The results may surprise you.

How many had ‘Covid-19 symptoms’?

240 people reported symptoms that fit the ‘case definition‘ which is used to guide the doctor’s suspicion of Covid-19. But 50% of them required no medical assistance at all and managed at home (including not calling NHS111).  15% of this group were admitted (including the 8 with Covid-19).  Eleven others in this group had negative Covid-19 tests.

Covid-19

We’d like to take this opportunity to remind you if your loved one experiences Covid-19 the T21 Research Society are still collecting data on cases of confirmed Covid-19 around the world, you can learn more here.

We are pleased to report on the outset that thankfully only 8 people reported confirmed Covid-19.  Again remember that the government has not been aggressively testing so the low numbers you reported mainly indicate some of you required attendance at hospital and therefore testing.

The affected age ranges included 4 adults, 1 newborn, 1 infant and 2 aged 2-12 years.  Most had at least 1 pre-existing condition, obesity and thyroid being most common.

Seven were admitted and 4 went to a general ward and 3 needed more support like oxygen treatments so went to ITU/HDU.

With such low numbers we cannot draw conclusions and will await the results of T21 RS survey as well.  Please continue to bear in mind that at the very minimum those with DS fall in the ‘moderate increased risk group’ according to NHS guidance.

 

Official Shielding Letter

142 (15%)  people received the letter from the government telling them to shield their loved one.  Shielding letters have gone out automatically but not ‘perfectly’ including some not qualifying and leaving out others who should have one.  To learn more visit the NHS guidance here.  As stated above at the very minimum those with DS fall in the ‘moderate increased risk group’ according to NHS guidance i.e. learning disability and qualify for flu vaccines.

We will be back with more information about our school aged children as soon as possible but thank you again for taking part in this survey.  For those of you new to our page we are the UK’s only Down’s syndrome research charity established over 20 years ago.

People affected by Down’s syndrome deserve the same research innovations to improve their health that other conditions have. Yet the annual research spending per person with Down’s syndrome to improve quality of life is currently in the region of £16.52, of which only £5.33 is towards treatment studies to test interventions.

We will bring the best scientific research to the issues affecting our community by:

  • Funding and promoting ground-breaking medical research;
  • Improving understanding of Down’s syndrome;
  • Supporting the human rights of people with Down’s syndrome and their families through advocacy.

Our vision is a long, healthy, happy life for people with Down’s syndrome and their families.   Please consider supporting our work.

DSRF was pleased to collaborate with Positive About Down Syndrome on this project to maximise reach and raise awareness of the Foundation.