Introduction

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, 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.

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 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: When Do I Need To Seek Help? | Your COVID Recovery

Post COVID Assessment Service (PCAS) East Sussex

East Sussex Healthcare NHS Trust and Sussex Community NHS Foundation Trust provide a Post COVID Assessment Service for East Sussex.

The PCAS team (which consists of occupational therapists and physiotherapists) 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 at least after 12 weeks after contracting COVID.  East Sussex Healthcare Trust will also accept referrals from health care practitioners working in its Occupational Health Team or Acute Post COVID Team.

Once the referral has been accepted a patient will be contacted by PCAS to confirm that they have been referred. Appointments will either be by video call or over the telephone.  The initial assessment will typically last for one hour.  There are four onward pathways following on from the initial assessment.  Route 1 is self-supported management.  Route 2 is management through Your COVID recovery platform.  Route 3 is direct management and onward referral to community services.  Route 4 is escalation to primary care.  Not all patients will need or be offered an assessment appointment.    

For further information about the PCAS see either the ESHT or SCFT website: https://www.esht.nhs.uk/service/post-covid-assessment-service/post-covid-assessment-service/ or https://www.sussexcommunity.nhs.uk/services/post-covid-assessment-and-support-service-pcass/124540

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.

East Sussex Healthcare Trust also have a website offering advice, exercises and guidance to help you recover from Long COVID Recovering from Covid-19 – East Sussex Healthcare NHS Trust (esht.nhs.uk).

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:  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 vocaluplift@outlook.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: 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. 

Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK – Office for National Statistics (ons.gov.uk)

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.

Contact us

You can still share feedback with us about your own experience of Long COVID. 

Telephone:  0333 101 4007  Text 07860 018 613

Email:  enquiries@healthwatcheastsussex.co.uk


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