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 Brighton and Hove welcomes feedback on your experience of living with Long COVID and the care and support you have received, in particular NHS services and social care services.
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 post-COVID syndrome on the NHS website.
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.
Healthwatch England has also produced information - Find out about Long Covid
Should I speak to my doctor about my symptoms?
If you are concerned about any of your symptoms contact your doctor. You can also speak to other healthcare professionals like community pharmacists.
If your doctor thinks you have Long Covid, they will look at your medical history and ask questions about your symptoms and the impact they are having on your day- to-day life.
They may also examine you and arrange for tests to be undertaken, such as blood tests, measuring your blood pressure, measuring your oxygen levels or a chest X-ray.
What support should I receive after I’ve seen my doctor?
After you have seen your doctor, they will talk to you about what they think is happening and discuss any support they think you need. They will also rule out any other conditions or illnesses that might be causing your symptoms.
Your doctor may give you advice about how to manage and monitor your symptoms at home.
If your symptoms are having a big impact on your life, you may be referred for:
- Support from primary care services, community services or mental health services.
- Specialist care.
If you need specialist care you may be referred to a Post COVID Service, where you’ll be looked after and supported by a range of health care professionals.
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 either the ESHT or SCFT website: Rehabilitation – East Sussex Healthcare NHS Trust (esht.nhs.uk) or https://www.sussexcommunity.nhs.uk/services/post-covid-assessment-and-support-service-pcass/124540.
Your COVID Recovery
The NHS has also launched an online resource called ‘Your COVID Recovery’ which is available in two parts.
The first part of the platform is designed to offer advice and guidance to support your physical and emotional recovery if you have Long COVID symptoms. You will need to get a referral from your doctor to access this online resource .
The second part of the Your COVID Recovery resource can be accessed following referral from a Post COVID Service. Through this platform you can get advice and support from health care professionals on your mental health, physical activity, managing your symptoms and diet. You’ll also be able to track your symptoms and set goals.
Other support available
The World Health Organisation has produced a helpful guide for managing your illness yourself. This includes advice on managing different symptoms, returning to work and a tracking diary to record your symptoms.
You might be able to get support for your symptoms from pharmacies and community groups.
Tips for managing Long Covid symptoms
There are lots of small things you can do to manage your symptoms. Ensuring you get enough sleep, and eating a healthy balanced diet are two important ways to look after yourself.
It’s also important to conserve your energy. To make sure you don’t burn out before the end of the day try following the 3 P’s Principe – pace, plan and prioritise.
- Be kind to yourself and allow yourself to slow down.
- Break activities into smaller tasks and spread them out throughout the day.
- Stop when you get tired, don’t push yourself until you are exhausted – you’ll recover quicker this way.
- Build rests into your tasks and plan breaks between activities. Resting is key to recharging your energy.
- Look at the activities you need to do on a daily and weekly basis and spread them evenly across the week.
- Think about which activities are going to tire you out the most, and make sure these don’t happen on a busy day.
- Avoid planning activities at times of day when you are often more tired.
- Think about whether there are ways you can adapt tasks to make them easier – for example sitting down whilst doing the washing up or getting equipment to help you around the home.
- Some daily activities are necessary, but others aren’t. There might be some tasks you can stop, do less often or ask someone to help you with until you are feeling better.
- Make sure you do a balance of necessary tasks, like washing, but also the things you enjoy doing, such as walking the dog or meeting friends.
- Start the day by asking yourself:
- What do I need to do today and what do I want to do today?
- What can I put off until another day?
- What can I ask someone to help me with?
There are many community groups across 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 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 Health line - 0300 5000 101 - The Sussex Mental Health line is a helpline run by Sussex Partnership NHS Foundation Trust. Callers dialing 111 for the Sussex Mental Health line need to ask to be put through to the Sussex Mental Health line. 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: https://www.longcovid.org/
Long Covid Kids has a peer-to-peer support group with over 5000 children and young people participating: https://www.longcovidkids.org/
Vocal Uplift in Hastings offer a relaxed space to meet other suffers, and through breathing exercises and singing, alleviate your symptoms. Email firstname.lastname@example.org 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: https://www.longcovidkids.org/. 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 may give you reassurance and support: Family, Friends and Carers | Your COVID Recovery.
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.