NHS Update: Help for Long Covid
Kent and Medway Long Covid Network Edited by: Dr N.Banik GP Dec 2021
Dear Kent and Medway patients,
Recovering from Covid: what to know
The best way to prevent Long Covid is to have both dose of the Covid vaccine and the booster. Upto 50% protection against Long-Covid was shown in latest studies from Zoe Covid study at Kings College London.
In the past two years of the Covid epidemic our understanding of the long term impact and treatment of this new disease continues to grow. We know that as many as 1 in 12 patients will find the recovery both slow and difficult. Although many people affected by Covid-19 will get better in the first 6-8 weeks of illness; some will still be struggling beyond this early phase and if still having symptoms beyond first 12 weeks are said to have got Long-Covid or post-Covid syndrome1. Patients can have dozens of symptoms - both physical health and mental well-being problems.
These symptoms may appear weeks or months after the start of the illness and have been linked to imbalances in nervous system, hormones and imbalance in the body’s immunity. They include: low energy and intense fatigue, breathlessness, aches and pains in muscles/joints, pains in chest and lungs, palpitations, alteration and loss of smell; stomach and bowel symptoms. Mental health problems include anxiety, depression and patients who were in ITU some may get PTSD; along with brain fog/sluggish memory and dizziness. Younger adults and occasionally children can also get affected by this Post-Covid syndrome1.
Some ideas we have picked up from UK and International studies:
- Physical or mental workload beyond the patient’s “energy capacity” may cause a worsening of symptoms including fatigue, fever, pain, and breathlessness. Relapses may manifest immediately or after a delay of 24-48 hours and may last days, weeks or occasionally months. Pacing your exercise according to a maximum target heart rate can prevent relapses and speed up recovery. For someone aged 40 years that is keeping heart rate below 100 and for 60 years that is below 90/minute.
- Autonomic nerve dysfunction in the body can lead to faints, dizzy spells, tremors/shakiness and palpitations. This is known as Postural tachycardia syndrome (PoTS). For more details of POTS and POTS plus see: https://www.potsuk.org/
- Histamine imbalance or mast cell activation is another imbalance that is being increasingly recognised. To help, the role of Low Histamine diets and anti-histamine medications are being explored. This problem can cause patients to exhibit sensitivity to histamine-rich foods and prominent GI symptoms (bloating, cramping pain, diarrhoea, acid reflux). See UK dietician association expert advice from: www.bda.uk.com/resource/low-histamine-diets-and-long-covid.html
Post Covid Management Help available:
Up-to date information about Long Covid can be found on the following reliable websites:
- NHS Your-Covid-Recovery https://www.yourcovidrecovery.nhs.uk/
- Asthma UK and British Lung Foundation Post-Covid hub: https://www.post-covid.org.uk/ with links for patients, health care professionals and research teams.
- WHO Patient Self Management Guide - a practical step by step program.
The websites have latest patient guides on symptoms and steps to take to promote a steady recovery. Your-Covid-Recovery is also linked to the rehabilitation program for patients who are under the NHS recovery program. They will also be given an app to monitor progress via a web interactive program.
Social media support groups: We now have groups created and supported by British Lung Foundation and Macmillan UK which contain many useful ideas from fellow patients and professionals. www.selfhelp.org.uk/COVID-19_Survivors_Group_UK
Helping UK Research Teams: Covid-19 and the SARS-2 virus has created an entirely new illness which health care teams around the world are learning about and having to manage as best as they can. However a large number of scientific studies are going on and even reporting your symptoms back to NHS teams like ZOE symptom tracker www.covid.joinzoe.com can help researchers in understanding Covid better. If you do not have access to the internet, your symptoms can be reported by a relative or friend with a smart phone/online access on your behalf. Several long term trials are enrolling long Covid patients: See NIHR website details www.nihr.ac.uk/news/185-million-awarded-to-new-research-projects-to-understand-and-treat-long-covid/26895
Referral to specialist led post Covid service
If Patients are not recovering with self-management guidance or have more severe problems, they need a GP clinic assessment and should be entered in patient GP records as having post-Covid syndrome. They can then be referred to the Post Covid Assessment Service for a detailed assessment by experienced clinicians. This service covers all areas of Kent/Medway and can be used 12 weeks after the acute illness first struck. Outcomes can include:
- Registering with Your-Covid-Recovery program and if needed Occupational Therapy help
- Consultant clinic specialist review e.g. by chest, cardiology or rheumatology
- Mental health problems assessment and referral to counselling or other well-being measures.
Well-being and mental health support: NHS Counselling teams are accepting Long Covid mental health self-referrals either online or by phoning. See what is available in your area: https://www.kentandmedwayccg.nhs.uk/mental-wellbeing-information-hub
Many patients have found mindfulness and meditation of great benefit: www.nhs.uk/mental-health/self-help/tips-and-support/mindfulness/.
NHS staff can get help from: www.kentandmedwayccg.nhs.uk/staff-wellbeing-support
Encouraging singing and art for health recovery: Music and singing has proven benefits for mental health/dementia sufferers/ Parkinson’s disease and COPD. Much work has been done by Kent based organisations like the CANTATA trust Canterbury and music4wellbeing. They are running internet/web singing group for lung health/post-Covid recovery program which is enrolling patients under the banner ‘sing to beat Covid’. www.singtobeat.co.uk/covid-19. A similar approach is also being organised through British performing arts group BAPAM4 with education programs and videos and the ENO/English National Opera.
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