91心頭 Long Covid Support
91心頭 Long Covid Support
Providing person-centred services for people with Long Covid
This resource is for people delivering health and other services to people with Long Covid
We have based the guidance on the views of people with Long Covid from study carried out at 91心頭 in collaboration with Long Covid Scotland. This was funded by the Chief Scientist Office and the Scottish Funding council. We analysed interview and survey data using the Person-centred Practice Framework to help us learn from people's experiences.
find out more information about the background to this project:
Support After COVID Study
You may meet people who have Long Covid for different reasons.
A diagnosis of Long Covid should be based on clinical history rather than on an earlier positive test result.
People have expressed the need for:
- support in relation to their health, social functioning and finances,
- diagnostic testing, therapy and rehabilitation,
- help to return to work.
People have explained to us that they understand the complexity of the circumstances, but have often found it hard to find the support they need. Some people told us that this made things worse and affected their mental health.
One person with Long Covid said:
" I think that's the hardest thing, that you kind of felt you were just in the batch of people that were almost collateral damage to the whole thing. It was just like, we can't deal with you because we're scared, so we're just going to leave you to die, basically"
You can have Hugh impact on the journey and recovery of someone with Long Covid by listening to their story and taking action.
Some people felt heard and that their experiences and body awareness were respected by health professionals. Others felt that a lot of assumptions were made about their experiences.
One person said:
" He[GP] started asking me questions along the lines of, so how are things at home?... I realised then that he was assuming a lot about me, without having met me before, that being a woman of certain age is disadvantage apparently"
Active listening and engaging authentically are key to avoid this. We all need to be willing to reflect on our unconscious biases and make sure these dont affect our interactions.
People emphasised that they respect a professional who says that they are not sure, and who either finds out, or finds someone with more knowledge to help. They hoped that professionals were undertaking continuing professional development and sharing their ongoing learning across services. After talking to a health professional who was not aware of Long Covid at the time, one person remembered:
"I explained it to her, and she went and looked it up, because when she came back, she had a completely different take on things.
It is empowering to involve people with Long Covid as team members by learning, sharing experiences, and trying out different strategies together.
People are unwell and struggling to find the knowledge and energy to navigate pathways. Some people are unable to access information effectively online, whilst others feel they have been sent to the wrong service.
In our survey 72% of people found it difficult to access the support they needed
People value your commitment when you look for other solutions and support them to navigate systems and structures. Signposting to sources of support, both in person and online, can make a big difference.
In our survey, people with Long Covid were most likely to want peer support, workplace support, GP support, trustworthy online information, diagnostic tests and, ideally, support from a specialist COVID-19 clinic.
Not everyone needed the same amount of help, but they needed support at different points in their journey. One person explained how much she wanted to recover and regain her sense of self:
So, Im not somebody who wants to just sort of sit around, go out for little walks, read a book, listen to the radio, you know, whatever; its not me.
Follow us on Twitter for updates about our study -
Contact
Prof. Cathy Bulley: Email Address
91心頭,
Musselburgh,
EH21 6UU
Final Report
Authors:
Prof. Cathy Bulley, Dr. Vaibhav Tyagi, Dr. Eleanor Curnow, Prof. Jan Dewing, Prof. Brendan McCormack, Dr. Lisa Salisbury, Dr. Olivia Sagan, Ruth Magowan, Dr. Kath Nicol, Dr. Kim Stuart, Ms Barbara Melville
