Patient and Carer Resources
Please take a look below for resources to help support people with Long Covid.
Symptoms
Symptoms of acute Covid-19 infection
It is important to correctly identify whether you have an acute Covid-19 infection so that you know whether to seek a test. This is important so that you know to self-isolate in order to avoid transmission to others and to seek appropriate medical support where necessary. As the NHS symptom list has not yet been updated to reflect the wider range of potential symptoms we advise checking the CDC list, which is more comprehensive.
WHO poster raising awareness of Covid-19 symptoms:
Symptoms of Long Covid
Here are links to the NHS, and CDC pages on symptoms of Long Covid. The most comprehensive survey of Long Covid symptoms amongst patients to date can be found on the Patient Led Research study.
The Long Covid Kids website has further information on the long-lasting effects of Covid-19 in children, including a downloadable symptoms chart.
Symptom Management
Symptom Management
Important information
Currently there is no cure for Long Covid, but some people may find some relief from their symptoms through pharmaceutical and/or non pharmaceutical treatments, therapies or symptom management approaches.
Long Covid Support does not recommend any specific treatments or approaches to symptom management. Instead, we share information others have found useful to allow you to make informed decisions about what is right for you.
Always discuss treatments, therapies, supplements and dietary changes with a medical professional.
Similarly, Long Covid Support is not able to provide legal or other advice to individuals about their situation with their employer, landlord or medical providers.
Please click on the titles below to see the full information for each symptom.
NHS Your COVID Recovery
As you find yourself recovering from COVID-19 you may still be coming to terms with the impact the virus has had on both your body and mind.
These changes should get better over time, some may take longer than others, but there are things you can do to help.
Your COVID Recovery helps you to understand what has happened and what you might expect as part of your recovery.
Getting Help
Medical Appointments
It is a good idea to take with you notes of key points you wish to convey and questions to ask, and also to take notes during appointments.
UK: The NICE clinical guideline states that patients may be referred by their GP 4+ weeks from known or suspected Covid-19, and that you don’t need to have a positive test result or to have been hospitalised. People should be offered tests and investigations tailored to their signs and symptoms to rule out acute or life-threatening complications and find out if symptoms are likely to be caused by Long COVID or a new, unrelated diagnosis.
US: The CDC clinical guideline states that post-COVID conditions are a wide range of new, returning, or ongoing health problems people can experience four or more weeks after first being infected with the virus that causes COVID-19. Even people who did not have COVID-19 symptoms in the days or weeks after they were infected can have post-COVID conditions.
Top tips for doctors to recognise and manage Long Covid, written by two UK GPs
The locations of Long Covid Clinics in England announced on the 18th December 2020
The Clinics listed are now being referred to as Assessment Services and may not yet be fully operational. It is best to ask your GP to clarify what is available at local level. Please complete our Long Covid Clinics survey to feedback on your experience.
What you can do if you are still struggling to get help:
If you live in England, you can write to:
Your GP (doc) or GP Practice Manager. Also, your GP practice should have a Patient Participation Group, consisting of patients and carers, the practice manager and one or more GPs.
Your local Healthwatch, (there is one in every area of England). They aim to serve as a champion for the public in all matters relating to healthcare.
Your Clinical Commissioning Group. CCGs commission much of the NHS care including most hospital care. In some (but not all) areas, this includes GP services. Here is a handy tool if you are unsure of your CCG.
The following link provides more information as to how patients can have a say in their local healthcare services.
You can also write to your local MP and request that they advocate on your behalf.
Useful Resources
Useful Resources
1. Getting help from your GP: UK (England) template letter
This template letter you can share with your GP highlights how to request that:
- your illness is assigned the correct Long Covid diagnostic code;
- you are referred to a Long Covid clinic/assessment service;
- while awaiting a clinic referral you are referred for further investigations/treatment/support services as appropriate.
Please select the sections relevant to your own circumstances. There is a list of suggested references at the bottom of the template that you can also include where relevant.
2.Getting help from your GP: UK handout
Long Covid Scotland The Scottish campaign group have produced a printable/email-able leaflet for people to take to their GP.
Printable/email-able leaflet (PDF)
3. Getting help from your GP: codes
SNOMED CT is a structured clinical vocabulary for use in electronic health records. The use of SNOMED CT as a consistent vocabulary for recording patient clinical information across the NHS helps ensure data is recorded consistently and accurately.
SNOMED CT clinical vocabulary (PDF)
4. Long Covid in Children: Symptom Chart
A clear and informative chart of Long Covid symptoms in children based on information gathered from the Long Covid Kids study. Long Covid Kids have teamed up with the PeopleWith to provide an App that enables parents to log their children’s symptoms, generating a health report that can be shared with their GP. The information gathered will also help to develop a better understanding of Long Covid in children.
Children's symptom chart (PDF)
5. Return to work guide: For recovering UK workers
This leaflet offers guidance for workers from Occupational Health Professionals on how to manage getting back to work after COVID-19 infection and Long Covid. This leaflet is relevant to people already in employment or looking for work.
6. Advice on safe rehabilitation
These leaflets offer advice from Physiotherapists on how to resume activities at a pace that is safe and manageable. As it is currently unknown when and by what amount physical activity (including exercise or sport) is safe or beneficial, people should not be encouraged to push to the point of fatigue.
Support Groups
Support Groups
Living with Long Covid can be both frightening and isolating. Many online Long Covid peer support groups have been established globally. These are safe spaces for people living with Long Covid to access peer support.
(We do not moderate these pages, with the exception of our own Long Covid Support page, so we are unable to accept any responsibility for their content.)
Our sister groups:
Downloadable list of support groups around the world (PDF)
Mental Health and Bereavement
Mental Health and Bereavement
- Samaritans Phone 116 123
- Mind - the mental health charity
- Every Mind Matters - practical tips/activities on looking after your mental health for all ages
- The Help Hub - Free confidential telephone/video consultation with trained therapist/counsellor
- Childline - support for under 18's Phone 0800 1111
- Practitioner Health - free therapy sessions for NHS workers
- National Bereavement Alliance - directory of bereavement support organisations,that offer specialist advice and support to adults and children that have lost someone close to them.
- Cruse Bereavement Care - Experienced volunteers provide free and confidential advice, information and support for anyone who has been bereaved, by telephone, email or face-to-face. They also offer support to young people on their website. Phone: 0808 808 1677
Work, Benefits and Finances
Work, Benefits and Finances
- Citizens Advice
- GOV.UK advice on work and financial support
- Personal Independence Payment (PIP) - advice on claiming
- Gov.uk PIP - how to claim
- Ctizensadvice.org.uk PIP points table
- Citizensadvice.org.uk PIP how decisions are made
- Disabilityrightsuk.org PIP a guide to making a claim
- Turn2us.org.uk - PIP: What is the PIP test
- Money Saving Expert - Financial advice including coronavirus specific guides
- Step Change - free confidential advice on debt/money management
- Debt Advice Foundation - free confidential debt advice
- Support information for NHS employees
- SOM Return to Work Guide for Recovering Workers - The Society of Occupational Medicine
- Returning to work with ongoing COVID-19 symptoms - Four videos of guidance for employees and managers
Patient-led research
Patient-led Research
- Gez Medinger's Long Covid videos on YouTube - 50+ videos covering everything Long Covid-related.
- The Patient-Led Research Collaborative - Website for the US-based group