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COVID 19 Update for Trisomy Families

1 July 2020 


Caring for vulnerable children

The Coronavirus outbreak has created complex challenges for families caring for vulnerable children.
  • Guidance, health systems and social supports differ between the four home nations
  • Guidance specific to children has been very limited and there is a lack of clarity as to what extent guidelines are applicable to children


Recent changes to SHIELDING GUIDELINES are likely to be relevant for families caring for a child affected by Trisomy. Please take a look at Government guidance on shielding and protecting extremely vulnerable persons from COVID 19 and The Royal College of Paediatricians COVID 19 shielding guidance for more information.

Families should have received a text message or letter to let them know they are recommended to follow SHIELDING GUIDELINES.  If you have not received any NHS communications to this effect but think your child SHOULD be SHIELDING please follow the guidelines anyway and make contact with your medical team.

COVID-19: guidance on shielding and protecting people defined on medical grounds as extremely vulnerable
Support when Shielding


In ENGLAND the government is compiling a register of people who are SHIELDING, in order to provide support services through supermarkets, local authorities and the third sector.  You can register for this online below. 

Get coronavirus support as a clinically extremely vulnerable person

You can also contact your Local Authority for support and advice.


In SCOTLAND people who are shielding can register with the SMS Shielding Service to arrange deliveries of prescriptions and basic groceries.

Local authorities are also running helplines for anyone with additional questions or support needs.



In WALES your shielding letter should have included contact details on how to receive support if you are shielding. Their guidance is below:



 In NORTHERN IRELAND you can contact the community helpline for a weekly food parcel



The Council for Disabled Children (CDC), at the Minister’s request, has launched two new email inboxes aimed to answer questions, collate resources and share information on Coronavirus and the impact on children and young people with Special Educational Needs and Disabilities (SEND). They are designed to be used by professionals, practitioners, parent carers and families of children and young people with SEND.

The new ‘CDC questions’ inbox,
, provides the opportunity to ask questions about how coronavirus will impact on children and young people with SEND as well as other questions relating to the impact on families; the education, health, social care sectors; and the voluntary and community sector. We will collate Frequently Asked Questions (FAQs) and share them with the Department for Education and Ministers as appropriate, in order to publish an FAQs newsflash each Friday.
To receive the FAQs newsflash please sign up to our mailing list, selecting the ‘CDC Digest’ option: 

Caring for vulnerable adults

There is a plethora of government and medical guidance for families caring for vulnerable adults, however the sheer volume of it and the contradictions between various documents can be hugely confusing and worrying for families.

At the end of March there was significant outrage online in respect of the publication of the ‘Clinical Frailty Scale’ for assessing adult patients with COVID-19 infection and the potential for this being used in patients affected by learning disability. On the 25th March the relevant guidance was amended with the following paragraph in clarification:

‘The CFS should not be used in younger people, people with stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism. An individualised assessment is recommended in all cases where the CFS is not appropriate.’

There is specific guidance for professionals to aid the management of patients with Learning Disability, which is available here:

There has also been significant concern in the disability community about the BMA guidelines published last week.  There is a good summary of this debate here, alongside information on how to take part in the campaign:

The response from NHS England can be viewed here:


Direct Payments / Self Directed Support / other Local Authority Budgets

If you ordinarily have a support package through your local authority or NHS to help with care, health or education needs, it may be worth contacting them to see if there are permitted adjustments to your care package if your usual services are not possible at this time.

Other Resources

The British Society for Genetic Medicine has published some useful guidance for people with rare genetic conditions. 

Genetic Disorders has a good page on Covid for people with Rare Conditions, including a number of downloadable factsheets.

Genetic Alliance UK have launched a COVID hub for people affected by Rare Conditions.  

CONTACT has information for families caring for disabled children.

The Disabled Children's Partnership has a Coronavirus resource page. 

SOFT UK Support

We understand that there remain many questions for families in respect of the care of their children and young adults at this difficult time.  Several of the Umbrella Organisations to which we belong, such as the Council for Disabled Children and National Voices are working with the NHS to clarify information and advocate for the rights of our families.  We are keeping a close eye on these statements and campaigns and will share relevant information once it is confirmed.  It is firmly the intention of SOFT UK to work as part of these groups to represent our families.

If you have questions you feel are unanswered or specific issues you would like to raise, please contact us on so that we can share your views with these organisations.
Our support services remain operational usual and can be contacted on
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