Carer Support Long COVID Carer Support Jump to: Caring For Someone with Long COVID Long COVID Carers Survey What is Long COVID? Symptoms of Long COVID Diagnosing Long COVID Treatment, support and recovery What is the NHS programme Your COVID Recovery? Long Covid Support Groups Employment and Finances Long COVID Resources 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 and emerging, multiple and fluctuating symptoms. This is commonly referred to as Long COVID and as of 5th March 2022 “An estimated 1.7 million people living in private households in the UK (2.7% of the population) were experiencing self-reported long COVID” (ONS April 2022). 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. With evidence showing people more adversely affected and for longer, there is now a greater reliance on those family, friends and neighbours for support who also face challenges and life changes. However, many 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, work, finances Opportunity to discuss your specific situation Validation Support to manage your well-being Resources and peer support 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 It would be helpful to prepare for your visit to the G.P. Asthma and Lung UK have produced a useful aid which will help you document your symptoms, their severity and produce a report that can be printed which you can give to your G.P. My Long COVID Needs | My Long COVID 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 fluctuate, 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. Long Covid Support Groups Long COVID Carer Peer Support Group a monthly online facilitated open group. Contact our help line on Helpline: 0300 012 4272 to register or Contact | Worcestershire Association of Carers (carersworcs.org.uk) 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. Home - Long Covid Support Long COVID Support Group This is a private group for people with Long Covid (sometimes called long haul Covid, post-Covid syndrome, or PASC) or people who are caring for someone with Long Covid. You may have Long Covid if you haven't recovered from Covid after four (4) weeks. Long Covid Support Group | Facebook Long Covid Kids Our Purpose We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them. Long Covid Kids Long Covid Physio. Our website is for everybody living with Long COVID and anyone wanting to learn more. Reliable and accessible information is important when living with Long COVID. We know that quick and easy access is also critical when you need it the most. Visit our QUICK ACCESS page to find what you need easily. Quick Access — Long COVID Physio The Hope Programme is a range of face-to-face and digital courses, respectively, which empower people to manage their health and wellbeing and to flourish in their working and personal lives. HOPE PROGRAMME — Hope For The Community CIC (h4c.org.uk) If you or the person you care for have Long COVID and are unable to work If you are employed, you may be eligible for Statutory Sick Pay (SSP). If you’re not eligible or your SSP ends, you may be able to apply for Universal Creditor Employment and Support Allowance (ESA) if long COVID affects how much you can work. ESA gives you money to help with living costs and support to get back into work if you are able to. You can also apply for Personal Independence Payment if you have difficulty with everyday tasks and getting around. You can get a health and social care assessmentto find out what help you can get (for example equipment, home care, day centres) from your local council. If you or the person you care for have Long COVID and need help to seek, return or stay in work You can get support, training and advice on finding your next opportunity from JobHelpand Access to Work. Employers and employees can get advice from theSociety of Occupational Medicine or ACAS on managing health conditions at work, returning to work after COVID-19 and sickness and absence because of long COVID. You may need to ask your employer to makereasonable adjustments so you can continue to work while you recover (Taken from Find help and support if you have Long COVID - Department of Health and Social Care Published 24 December 2021) Find out what you could get Use an independent benefits calculator to find out, what benefits you could get, how to claim or how your benefits will be affected if you start work Benefits calculators Long COVID Resources Your COVID Recovery | Supporting your recovery after COVID-19 Your COVID Recovery | Supporting your recovery after COVID-19 Asthma + Lung UK (Formally 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. Long COVID | Asthma + Lung UK (blf.org.uk) My Long COVID Needs | My Long COVID My Long COVID Needs is designed to help you when explaining your Long COVID symptoms to your GP. You might want to print out your answers after you've finished your assessment, and take them with you to your GP appointment. Where to get help for physical concerns | My Long COVID Advice on where to get help for any physical concerns you may have while living with longer-term symptoms of COVID-19. Where to get help for practical or functional concerns | My Long COVID Advice on where to get help for any practical concerns you may have while living with longer-term symptoms of COVID-19. Where to get help for emotional or psychological concerns | My Long COVID Advice on where to get help for any emotional or psychological concerns you may have while living with longer-term symptoms of COVID-19. 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/ The British Heart Foundation - Long COVID: the symptoms and tips for recovery. While coronavirus symptoms may pass quickly, some people are suffering long-term effects. We look at the symptoms of long COVID and offer some tips to help manage them. bhf.org.uk/informationsupport/heart-matters-magazine/news/coronavirus-and-your-health/long-COVID 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 Rethink – Long COVID and Mental Health. Everyone’s experience of long COVID is different. Some people only have one symptom, but others might have many. How bad your symptoms are can vary. Long COVID can affect your mental health. rethink.org/advice-and-information/living-with-mental-illness/wellbeing-physical-health/long-COVID-and-mental-health/ Long COVID & ME/CFS: Information & Management by Dr Charles Shepherd - Information and guidance from The ME Association on Post-COVID Fatigue, Post-COVID Syndromes, Long COVID and the overlaps with ME/CFS https://meassociation.org.uk/2021/05/long-COVID-me-cfs-information-management-by-dr-charles-shepherd/ Worcestershire M.E. Social Group - ME/CFS & Post Coronavirus COVID-19. Post COVID-19 Fatigue; Post/Long COVID-19 Syndromes; Post-COVID ME/CFS. Explanations from ME charities plus recent news articles. https://worcsmegroup.weebly.com/blog/mecfs-post-coronavirus-COVID-192766778 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. org.uk/long-COVID Access to Work is a publicly funded employment support programme that aims to help more disabled people start or stay in work. It can provide practical and financial support if you have a disability or long term physical or mental health condition. gov.uk/government/publications/access-to-work-factsheet/access-to-work-factsheet-for-customers#claiming-access-to-work-during-the-coronavirus-COVID-19-outbreak Benefits and financial support if you're caring for someone Find out what you could get Benefits calculators Benefits and financial support Carer's Allowance Carer's Credit Universal Credit Pension Credit If you have Long COVID and are unable to work Find help and support if you have long COVID - GOV.UK (www.gov.uk) 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 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. AGE UK - Living with long COVID ageuk.org.uk/information-advice/coronavirus/coronavirus-guidance/living-with-long-COVID/ Sources Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 7 April 2022 –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 Long-term effects of coronavirus (long COVID) - NHS (www.nhs.uk) NICE COVID-19 rapid guideline: managing the long-term effects of COVID-19 www.nice.org.uk/guidance/NG188 Find help and support if you have Long COVID - Department of Health and Social Care Find help and support if you have long COVID - GOV.UK (www.gov.uk)