Long COVID Carer Support


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Caring for someone with Long COVID

The COVID-19 pandemic saw many people relying on family members, friends and neighbours to help them with their physical and mental health and support them to manage their day-to-day life.

During 2020 it was noticed an increasing number of people were not recovering from the original infection and continued to experience prolonged, multiple and fluctuating symptoms. This is commonly referred to as Long COVID and in October 2021 “an estimated 1.2 million people self-reported long COVID and associated activity limitation” (ONS November 2021).

 There will be people with co morbidity, having Long COVID on top of other health conditions and those who were perfectly fit and healthy, now with Long COVID and each will have their own challenges and life changes. There is a greater reliance now on those family, friends or neighbours for support who also face challenges and life changes however may play down what they do and may not recognise themselves as a Carers.

Supporting Carers throughout the pandemic, Worcestershire Association of Carers are aware of the anxiety, physical stresses and uncertainty around Covid 19 and recognise that the nature of Long Covid will have great impact on Carers wellbeing.

Worcestershire Association of Carers now have a Long Covid Carer Advisor who can support you in supporting someone with Long Covid.

                                

   If you support someone with Long COVID  and would like:

  • Support to navigate Long COVID Services
  • Quality information on understanding symptoms specific to the person you care for
  • Strategies to support the person you care for
  • Support to manage day to day issues as a result of caring g work, finances
  • Support to manage your well-being
  • Information on access to resources and peer support
  • Opportunity to discuss your specific situation

Please call us via our helpline for a chat about  supporting someone with Long COVID and to get support in your caring role.

Carers Hub Helpline: 0300 012 4272

Monday – Friday: 9am to 7pm Saturday: 9am to 12pm

            

Long COVID Carers Survey

We are interested how supporting someone with Long Covid is affecting you. If you are supporting someone with Long COVID please click on the link below to complete the survey:

https://forms.office.com/r/9SNWfxS94b

The survey is anonymous and the results will help us to further develop our Long COVID Carer resources and services.

What is Long COVID?

 “Long COVID” is an informal term that is commonly used to describe signs and symptoms that continue or develop after an acute infection of COVID. Depending on how long you have ongoing symptoms for, it can be called one of 2 things:

Ongoing symptomatic COVID

This is where your symptoms continue for more than 4 weeks. If your symptoms last for longer than 12 weeks, it will then be called;

Post-COVID Syndrome

This is where your ongoing symptoms continue for longer than 12 weeks and cannot be explained by any alternative diagnosis.

www.yourCOVIDrecovery.nhs.uk

It will be helpful to learn as much as you can about Long COVID and strategies that you can undertake in supporting the recovery of the person you care for. https://www.yourCOVIDrecovery.nhs.uk/your-wellbeing/family-friends-and-carers/

Symptoms of Long COVID can be many and varied and can change over time.

The most commonly reported symptoms include (but are not limited to) the following:

Extreme tiredness (fatigue)                Shortness of breath                         Heart palpitations

Dizziness                                          Difficulty sleeping (insomnia)            Joint pain

Depression and anxiety                      Pins and needles                              Rashes

Tinnitus, earaches                              Chest pain or tightness

Problems with memory and concentration ("brain fog")

Stomach problems such as feeling sick, diarrhoea, stomach aches, or loss of appetite

Common COVID symptoms such as a high temperature, cough, headaches, sore throat, or changes to sense of smell or taste

The symptoms of a pre-existing underlying health condition may also be exacerbated by COVID infection


Diagnosing Long Covid

If you think you or the person that you are caring for may have Long COVID contact your GP.

Your doctor will ask about your/their symptoms and the impact they are having on your/their life. They may suggest some tests to find out more about your/their symptoms and rule out other things that could be causing them.

These might include:

- blood tests                 - checking your blood pressure and heart rate                 - a chest X-ray                  

- further specialist investigations

Treatment, support and recovery

Your doctor will talk with you/them about the care and support that may be needed. This could be more tests, support or rehabilitation. 

A referral could be made to the Long COVID Assessment Clinic and there on into Specialist and Community Rehabilitation Services where you /they will be  supported by a range of health care professionals to manage symptoms, rehabilitation and aid recovery.

The support offered will depend on how your/their symptoms are affecting your/their life. Long COVID symptoms vary and may come and go, so you/they might feel okay one moment but worse at others. Consequently, different types and levels of support may be needed at different times.

Advice may be given about how to manage and monitor symptoms at home and this may be supported by equipment and health professionals.

A referral may be made to an online NHS programme (Your COVID Recovery 2).

 

What is the NHS programme Your COVID Recovery?

Your COVID Recovery is an online NHS platform with two key components:

  • An open publicly available site containing general information on all aspects of recovering from COVID-19 including physical, emotional and psychological wellbeing. The site offers general advice on recovery, returning to work and information for families and carers of patients with post-COVID syndrome (also known as Long COVID). This website also includes a dedicated section for Family, Friends and Carers.

 

  • An online, interactive rehabilitation platform specifically for patients with post-COVID syndrome, (also known as Long COVID) that is tailored for individuals and requires referral and face to face assessment from a healthcare professional. The healthcare professional can interact and monitor the patient’s progress.

 

FACE COVID’ is a set of practical steps for responding effectively to the Corona Crisis using the principles of acceptance and commitment therapy (ACT). This Video may be of interest to those with Long Covid and their Carers

FACE COVID Video https://www.youtube.com/watch?v=BmvNCdpHUYM FACE COVID Let’s now explore these, one by one....How to respond effectively

to the Corona crisis by Dr Russ Harris, author of The Happiness Trap.

  

Long COVID Resources

  • Long COVID Support is a peer support and advocacy group for people living with Long COVID. Their website includes helpful resources including symptom management, getting help, support groups, mental health and bereavement and useful resources. https://www.longCOVID.org/about Long COVID Support Group Facebook www.facebook.com/groups/longCOVID/  

 

  • The British Lung Foundation has lots of advice and support for people who are living with breathing issues, such as breathlessness associated with Long COVID. They also have advice on eating well, staying active and dealing with your mental health, which you might find useful. Their team of respiratory specialists are available to support you with Long COVID breathlessness. Call 0300 222 5942 from 9am – 5pm, Monday to Friday. https://www.blf.org.uk/support-for-you/long-COVID

 

  • English National Opera - ENO Breathe A breathing and wellbeing programme for people recovering from the effects of COVID-19. Referral needed by Long COVID Assessment Specialist where password will be given to access ENO site. eno.org/breathe/

 

 

  • Worcestershire Healthy Minds Supporting people aged 16 and over, who are experiencing difficulties such as stress, anxiety, low mood and depression. To access the service you must be aged 16 or over and registered with a GP in Worcestershire. We would encourage you to self-refer by completing the online self-referral form anytime. Alternatively, you can call: 0300 013 57 27 between 9.00am and 5.00pm Monday to Friday. healthyminds.whct.nhs.uk, www.healthyminds.whct.nhs.uk/guides

 

 

 

 

  • Royal College of Occupational Therapist: How to manage post-viral fatigue after COVID-19 -Practical advice for people who have recovered at home rcot.co.uk/node/3540

 

  • Royal College of Occupational Therapist: How to conserve your energy - Practical advice for people during and after having COVID-19 rcot.co.uk/conserving-energy

 

 

  • Advisory, Conciliation and Arbitration Service – advice for employers and employees. Long COVID symptoms could affect someone's ability to work or cause them to take sickness absence and prolong that return to the workplace. acas.org.uk/long-COVID

 

 

 

  • Lancashire COVID Patient Support is a resource that has been developed by a group of multi-disciplinary health professionals at Lancashire Teaching Hospitals. The purpose of the website is to support individuals with their initial recovery from COVID-19. It includes a range of exercises, advice and tips. https://COVIDpatientsupport.lthtr.nhs.uk/

 

 

  • Hereford and Worcestershire Health and Care NHS Trust - Coronavirus and Mental Well being

 www.hacw.nhs.uk/coronavirus-and-mental-wellbeing

 FACE COVID Video https://www.youtube.com/watch?v=BmvNCdpHUYM

You can now also access dedicated Silver Cloud online therapy modules to help reduce stress, anxiety and increase resilience as a result of COVID-19.                                              

SilverCloud. Making Space For Healthy Minds (silvercloudhealth.com) 

Note: you will need to enter one of the following PINs: HEREFORDSHIRE or WORCESTERSHIRE to access the modules.

 

 

 

 

Sources

Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 4 November 2021 – Office of National Statistics www.ons.gov.uk

Your COVID Recovery | Supporting your recovery after COVID-19 - www.yourCOVIDrecovery.nhs.uk

Long-term effects of coronavirus (long COVID) – NHS www.nhs.uk/conditions/coronavirus-COVID-19/long-term-effects-of-coronavirus-long-COVID/

NICE COVID-19 rapid guideline: managing the long-term effects of COVID-19 www.nice.org.uk/guidance/NG188

Published:

Updated:

Author: Rachel Cumino

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