From REC application 14/NW/0242 (that was quoted for this study -
https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3 by Simon Collin and Esther Crawley) the following intrusive questions have in recent years been asked of NHS CFS/ME clinic patients who completed the ‘Background Information’ questionnaire. NB Patients were possibly completely unaware that this data was destined for the NOD.
Sick Pay or benefits currently received:
Tick all that apply
Statutory sick pay Y / N
Employment and Support Allowance (ESA) Y / N
Personal Independence Payment (PIP) Y / N
Daily Living Component Standard / Enhanced
Mobility Component Standard / Enhanced
Independent Living Fund Y / N
Do you have a carer? Y / N
If yes, do they receive a carer’s allowance? Y / N
Other Y / N
If yes, please describe
According to the same REC application, the ‘Action for ME’ charity is represented on the NOD Steering Group, so were ‘Action for ME’ aware of patients being asked these intrusive questions? Did ‘Action for ME’ agree to these benefits questions being included?
There doesn’t appear to be any published NOD study that uses this particular set of collected data. So what was the purpose of collecting it? Any ideas anyone?