Long COVID or Post COVID Syndrome in East Sussex
Many people make a full recovery from COVID but for some, the illness can last longer. This is known as Long COVID or Post COVID Syndrome. There is support available and services that you can access. This webpage gives more information about NHS services (and how to access them), support and services provided by community groups and links to local and national Long COVID support groups. Healthwatch East Sussex welcomes feedback on your experience of living with Long COVID and the care and support you have received in East Sussex.
What is Long COVID?
How long it takes to recover from COVID-19 is different for everybody. The NHS advises that many people feel better in a few days or weeks, and most people will make a full recovery within 12-weeks. However, for some people, COVID-19 can cause symptoms that last weeks or months after the infection has gone. This is known as Post-COVID Syndrome or Long COVID. Find out more about what Long COVID is on the NHS website.
NHS treatment and support
NHS advice is that you should contact your GP if you are worried about symptoms four weeks or more after having COVID-19. Your doctor should ask about your symptoms and the impact they’re having on your life. They may suggest tests to find out more about your symptoms and rule out other things that could be causing them.
Your doctor should talk to you about the care and support you might need, and they may give you advice about how to manage and monitor your symptoms at home. If the symptoms are having a big impact on your life, you may be referred to the Post-COVID Assessment and Support Service (see further below) or a service that specialises in the specific symptoms you have. These services should help manage your symptoms and help you to recover.
You can find more advice from the NHS about when to seek help from your GP and what to expect if you do, on the NHS website here.
Post COVID Assessment and Support Service (PCASS) in Sussex
East Sussex Healthcare NHS Trust and Sussex Community NHS Foundation Trust provide a Post COVID Assessment and Support Service across Sussex.
The PCASS team consists of many Allied Health Professionals (including occupational therapists and physiotherapists), nurses, paramedic practioner and other staff members and is supported by a service GP and other medical support. The service aims to provide holistic virtual assessment, first line advice, education on self-management strategies, and access to appropriate resources. They also complete referrals to specialist services.
To access the service, contact your GP if you feel that your symptoms aren’t resolving after 4 weeks. There are some screening tests which need to be done in advance to ensure that you don’t have any other more serious underlying health conditions.
Once the referral has been accepted PCASS will contact you to confirm that you have been referred and to offer you self-management information. The initial holistic assessment will take place by video call or over the telephone and will typically last for one hour. From there you may be enrolled on to one of their 4 pathways to help you to manage your fatigue, breathlessness, any psychological issues and also assistance can be given for helping you to return to work. A care coordinator will support you through your time within the service as needed. You will be followed up at 3 months and 6 months after your treatment.
For further information about the PCASS see the ESHT website here.
NHS Your COVID Recovery and East Sussex Websites
A really good place to start with finding out more information, support and advice about your recovery from Long COVID is the NHS Your COVID Recovery Website: NHS Your COVID Recovery website.
Community Services in East Sussex
There are many community groups in East Sussex that can offer support.
- Brighton and Hove Wellbeing Service – This service provides talking therapies across Brighton and Hove for a wide range of general and diagnosed mental health concerns.
- Health in Mind – This service provides talking therapies across East Sussex for a wide range of general and diagnosed mental health concerns.
- Mind – Mind is a charity that provides advice and support to empower anyone experiencing a mental health problem.
- Sussex Mental Healthline – 0300 5000 101 – The Sussex Mental Healthline is a helpline run by Sussex Partnership NHS Foundation Trust. Callers dialling 111 for the Sussex Mental Healthline need to ask to be put through to the Sussex Mental Healthline. It is open 24 hours a day, seven days a week.]
Long COVID Support Groups
Long Covid Support have a support group that can be joined through its website here.
Long Covid Kids has a peer-to-peer support group with over 5000 children and young people participating. To find out more visit the website here.
Vocal Uplift in Hastings offer a relaxed space to meet other suffers, and through breathing exercises and singing, alleviate your symptoms. Email email@example.com or call Ailsa on 07775 971611 for more info.
Children and young people living with Long COVID
Long Covid Kids offers support to children and young people living with Long COVID. The organisation aims to raise awareness of Long COVID and related illnesses in children and young people, to establish suitable treatment and support services and to provide advice, support and connection for schools, families, children and young people.
Information for family, friends and carers
Supporting your family member, relative or friend following their COVID illness can be challenging. You may be providing emotional and physical help in addition to all your other responsibilities. This can be a very stressful time for you both. Information on the NHS website here may give you reassurance and support.
Official statistics and information
The Office for National Statistics produces a monthly report on the prevalence of long COVID which might be of interest to you. The reports are produced monthly so you need to click on the site for the latest update.
What’s your experience of Long COVID?
We are currently working on a project to find out about people’s experiences of living with Long COVID and the care and support they have received in East Sussex. We will share any feedback we receive with Sussex NHS Commissioners. They will use the insight we provide to help develop support for people living with Long COVID.
You can still share feedback with us about your own experience of Long COVID. Get in touch or complete our online form here.
Telephone: 0333 101 4007