Earlier this year #MEAction UK wrote, distributed and analysed a survey in response to The National Institute for Health and Care Excellence (NICE) releasing a call for evidence as they rewrite the ME guideline. Our full report from that survey found that ME/CFS services in the UK are not fit for purpose. Results identified that there was a failure of services to provide ongoing support or follow up which left respondents feeling abandoned and without help. Moreover, the experience of respondents showed that many ME services are providing unsuitable advice and treatments that often have a negative impact on patients’ health.
The survey asked respondents which service they attended, and whilst results showed worse outcomes for children and young people’s services, it also showed wide variation even within regions and the services themselves around the advice and input people with ME were receiving.
In order to break this down further, #MEAction UK advocates Sian Leary and Paul Duley have put together a dynamic dashboard, allowing anyone to view the data gathered for a specific region or service.
Some services had very few responses, so we advise caution in assessing these results, however, we felt it helpful for those newly diagnosed or referred to a service, or those being re-referred after many years of illness, to be able to see what experience respondents near them had through these services.
- We recommend viewing the dashboard on a laptop or computer, using a common browser such as Chrome, Mozilla Firefox or Edge. Unfortunately, the dashboard may not work on all phones and tablets.
- To choose a specific region/service first click where the button says “All”, then click “Clear” in blue. Click the service you wish to view results for, and finally scroll down to click the larger green “Ok” button. Wait a few seconds for the results to load and scroll to see all the charts.