Keeping safe from coronavirus: new guidance for adults who have Down’s syndrome

From this week, adults (18 and over) who have Down’s syndrome are to be added to the group of people who are classed as clinically extremely vulnerable. This means that they have been classed as at higher risk from coronavirus. The decision has been agreed across all four nations of the UK by their Chief Medical Officers.

People who are in the clinically extremely vulnerable group are advised to be extra careful in protecting themselves. In England GPs have been asked to contact their patients who are affected by this decision over the next few weeks to discuss what it means for them and their specific health needs. Adults who have Down’s syndrome and their families are encouraged to seek advice if they do not hear from their GPs in the next few weeks. Information about what it means to be on the clinically extremely vulnerable list can be found via the government website.

We are working separately with the Welsh Government who will be communicating with adults who have Down’s syndrome living in Wales once the national circuit-breaker lockdown ends there on 9 November.

UPDATE: Click here to download a Q&A document from the Department of Health and Social Care on the decision to add adults who have Down’s syndrome to the list of people who are clinically extremely vulnerable. They have also created an easy read version which you can access here.

Research based decision

The Government’s decision is based on research undertaken to better understand who is more vulnerable to coronavirus. The research on which the decision has been based was published last week in the British Medical Journal (BMJ) and the Annals of Internal Medicine. The research demonstrates an increased risk based on the data that was analysed.

Keeping safe

The DSA wants every adult who has Down’s syndrome to be able to keep themselves as safe as possible from coronavirus. We have produced some new accessible resources to help people who have Down’s syndrome stay safe, well, and positive, and on making choices and asking questions. They are called ‘Staying safe’, ‘Staying well and healthy’ and ‘Supporting me to make a decision: A Quick Guide’.

We have also produced a film where DSA ‘Our Voice’ member Sam explains what ‘clinically extremely vulnerable’ means.

We also invite people who have Down’s syndrome, their parents, carers, support workers and providers to a free webinar called ‘Supporting you to make decisions’. This will be held on 5 November, from 10.30 am to 11.30 am.

We all need to understand how best to keep safe and how to stay well, emotionally, and physically. We want to empower people who have Down’s syndrome to make their own decisions (within the guidance issued), with support from their families and supporters, and to ask questions about any decisions made for them where they have not been give accessible explanations.

Children

The DSA and other stakeholders have been engaging with the Department of Health and Social Care, the Welsh Government and NHS England to help them understand the implications of this decision, and to develop appropriate communication and support for people who have Down’s syndrome. We have been informed that very few children are at highest risk of severe illness due to the virus and that research studies have not found evidence that children who have Down’s syndrome are at higher risk than children who do not have Down’s syndrome.

We understand that the findings of the new research are worrying, and that being added to the group of people who are clinically extremely vulnerable will prompt many different reactions…from relieved, to worried, to upset. How it effects the way people live their lives will need careful consideration and support to make the decisions that are right for them as individuals (within the guidance issued) and the communities they are part of.

Unique and individual

The DSA wants to assure each and every person in our community that we are there for them and fighting for what is best and right. We will continue to advocate strongly for the unique and individual needs of every person who has Down’s syndrome.

The LeDeR programme investigates the circumstances surrounding the death of someone with a learning disability. We have written to the Head of the LeDeR programme to ask specifically what can be learnt from the deaths from COVID-19 to ensure the best possible care and interventions are offered.

Our website will be updated with new information as soon as we get it, and we will be producing Easy Read guidance every step of the way. Our Helpline is open Monday to Friday. Although we are unable to give individual clinical advice, our resources provide information about how to stay safe, well, and how to support individuals to make decisions that are right for them.

We realise that this news may be unexpected for some of you, but we are here to help the 40,000 people in the UK who have Down’s syndrome and their families and carers.