Long COVID
This booklet is for people who have had COVID-19 (with or without a positive COVID-19 test) and have symptoms that last more than four weeks, including:
- adults
- young people
- children.
It may also be helpful for:
- parents of children who have had COVID-19
- other family members, partners, friends and carers.
This booklet explains the recommendations in a guideline produced by the National Institute for Health and Care Excellence (NICE), the Royal College of General Practitioners (RCGP) and the Scottish Intercollegiate Guidelines Network (SIGN) on managing the long-term effects of COVID-19..
The booklet explains:
- common symptoms of long COVID
- how you would be assessed if you have new or ongoing symptoms after having COVID-19
- tests that may be part of your assessment
- how your care will be planned and who will be involved in your care
- what can help
- where you can find more information about your recovery
- how you will be followed up.
SIGN collaborated with the Digital Health & Care Innovation Centre (DHI) to develop a digital tool for people with long COVID. The aim of the tool was to help them access up-to-date treatment advice and record symptoms that can be shared with their GP.
The DHI Centre leads delivery of the national decision support programme ‘the Right Decision Service’. This service is used by teams across Scotland to develop their own decision-support platforms to share information, guidance documents and tools to support decision making. It can be accessed as a website (https://rightdecision.scot.nhs.uk) and mobile application (app).
The SIGN Patient Decision Support platform is an app and accompanying website which provides access to SIGN Patient Decision Support toolkits based on SIGN guidance. The ‘Managing the long-term effects of COVID-19’ toolkit can be found on the website SIGN Patient Information (signpatientdecisionsupport.uk) and within the ‘SIGN Patient Decision Support’ app which can be downloaded from the App store and Play store and for use on iPhone, iPad, iPod Touch and Android phones and tablets.
The SIGN Patient Decision Support toolkit for ‘Managing the long-term effects of COVID-19’ includes information from the SIGN booklet on ‘Long COVID’ which itself is based on the SIGN guideline on ‘Managing long-term effects of COVID-19’. The toolkit includes an interactive symptom diary, allowing users to track symptoms and record progress.
The objectives of this evaluation were to:
- summarise feedback from app users
- make recommendations about updating of the current toolkit
- make recommendations about whether digital toolkits should be developed for patients and the public in the near future.
Long COVID is a new illness that healthcare professionals are still learning about. Most of the recommendations are based on the experience and expert knowledge of healthcare professionals. Research is taking place and the guidance may change when its results are known.
NICE, RCGP and SIGN are developing the guideline using a ‘living’ approach, which means that the guideline will be reviewed and updated when new research comes out. This booklet will be updated at the same time.
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