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Recognition - Research - Rehabilitation
OUR STORY
Prime Minister Boris Johnson, respond to our SOS.​
Throughout the Covid-19 pandemic government policy has continued to overlook the needs of those with long term symptoms. Reports from the news media and briefings from Downing Street overwhelmingly focus on patients with severe disease and those who have tragically lost their lives. However, during this period millions of people in the UK contracted the virus. Unless their symptoms were considered serious, they were left to manage their illness at home, sometimes alone. Their suffering was invisible. Contrary to the view that those not hospitalised have only ‘mild’ disease, many of these people were faced with debilitating, frightening symptoms.
A clearer picture of the long-term effects of Covid-19 is starting to emerge. While it’s still claimed that patients with ‘mild’ symptoms usually recover within a couple of weeks, previously fit, healthy and in many cases young people are battling continuing illness and are unable to return to their previous lives. Sufferers report breathing difficulties, muscle weakness and pain, fatigue and prolonged fever as well as neurological, vascular and cardiac symptoms. The Zoe Covid Symptom Study has produced figures suggesting that 10% of people who contracted Covid-19 are still unwell after three weeks, and that 5% may continue to be sick for months. Hundreds of thousands of UK citizens are likely to be affected, and they represent a largely ignored cohort of Covid-19 victims
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Stories of individual cases highlighting their suffering and problems getting treated for their illness have begun to appear in the media, but to date the UK Government has failed to recognise this growing crisis. Some health professionals seem to be unaware of the existence of this phenomenon; those that do often lack the resources to help, leaving many struggling to get the care and recognition they need. Sufferers may be unable to get support from family and friends who do not understand why they are ill for so long, and many are put under pressure to return to work or otherwise face a loss of sickness benefit.
A group of long-term sufferers formed the LongCovidSOS campaign to put pressure on the government to recognise the needs of those with Long Covid, and to raise awareness among the general public and employers so that people with this condition are not discriminated against. The current ‘Message in a Bottle’ campaign highlights the sense of abandonment many feel. The aims can be summarised as ‘Recognition Research Rehab’:
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Set up a working group to address the needs of long-term Covid-19 sufferers
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Commission urgent research into this condition
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Ensure that all practitioners are empowered to treat these patients appropriately
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Establish multi-disciplinary clinics to properly assess, test, diagnosis and care for them
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Focus on the economic implications: provide long-term sick leave, financial support and take steps to ensure employers are made fully aware
The campaign has 3 elements:
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an open letter to the Prime Minister, Health Secretary and others involved in health policy. It has to date attracted more than 1000 signatures, and will be sent to arrive on 08/07/2020. It can be found here
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a short film highlighting the impact of the disease will be released on the same day – see the Film tab
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the delivery of personal ‘messages in a bottle’ from sufferers to 10 Downing Street at a later date