(London, UK, 6 July 2020) – Thousands of ‘Long COVID’ patients are feeling unheard and unsupported. The charity Patient Safety Learning is giving these patients a voice to ensure urgent action is taken by leaders in health and social care.
Helen Hughes, Chief Executive of Patient Safety Learning, said: “There is growing evidence that there are many patients recovering in the community with long-lasting symptoms who are feeling abandoned, confused and without support. We must take action to better understand the needs of these patients and provide them with safe and effective care.”
Although Patient Safety Learning welcomes the recent government announcement of an online patient recovery portal and treatment plans, questions remain around whether this will meet the specific health needs of Long COVID patients. “These patients have felt unheard for too long; we must make sure they do not slip through the net,” adds Hughes.
Long COVID patients are those with confirmed or suspected COVID-19 who continue to struggle with prolonged, debilitating and sometimes severe symptoms months later*.
It is crucial that Long COVID patients are heard and supported, and that research is undertaken to better understand Long COVID and its long-term effects on physical and mental health.
Long COVID patient Barbara Melville told Patient Safety Learning, “the worst part is that I’ve had to fight so hard to get the referrals I need” and another, Dr Jake Suett, said that, after joining the ‘Long Covid Support Group’ on Facebook, he “was suddenly faced with the realisation that there were thousands of us in the same position” and that it confronted him “with the tremendous volume of genuine human suffering that was going unrecorded and unnoticed”.
Patient Safety Learning is calling for leaders in health and social care to act urgently by funding research into Long COVID and ensuring that patients are given a platform to raise concerns and receive appropriate support.
The charity has identified the current key issues as being:
There is a lack of guidance and support for Long COVID patients who have been managing their illness and recovery from home (to date, much of the guidance has been designed specifically for patients who have been acutely unwell and in hospital).
There is a lack of understanding around the effects of Long COVID on patients’ mental health and wellbeing.
There is a risk that symptoms of other serious conditions are being overlooked for individuals with Long COVID and, instead, are being attributed simply as after-effects of COVID-19.
Patient Safety Learning’s proposed actions to address the safety issues concerning Long COVID care can be found on our website.
Notes to editors:
*The symptoms for those with Long COVID vary greatly but many are experiencing rashes, shortness of breath, neurological and gastrointestinal problems, abnormal temperatures, cardiac symptoms and extreme fatigue.
Patient Safety Learning is a charity, which helps transform safety in health and social care, creating a world where patients are free from harm. We identify the critical factors that affect patient safety and analyse the systemic reasons they fail. We use what we learn to envision safer care. We recommend how to get there. Then we act to help make it happen. For more information: www.patientsafetylearning.org
Patient Safety Learning’s blog published today on patient safety concerns for Long COVID patients outlining these issues in more detail can be found here.
A blog by Dr Jake Suett published today in which he outlines his experience of suspect Long COVID calls needed can be found here.
An open letter from Dr Jake Suett to MPs to make clear the needs of this group can be found here.