Intended for healthcare professionals

Rapid response to:

Editor's Choice

At your next conference ask where the patients are

BMJ 2016; 354 doi: https://doi.org/10.1136/bmj.i5123 (Published 22 September 2016) Cite this as: BMJ 2016;354:i5123

Rapid Response:

Re: At your next User Led conference ask where the health workers are

There are many user led and user controlled events these days. As well as service users being encouraged to participate in events/conferences/meetings, both international and national, the reverse needs to begin in a meaningful way. Health workers need to be attending user led/controlled events and to participate, not as speakers or even always as experts. People from all areas of health and social services need to attend user groups and conferences as learners.

The power dynamic is different when users are not just invited as participants. Rather different conversations, knowledge and problems encountered can be aired more openly amongst supportive colleague-users and reveal different perspectives. It has taken far too long to get even the minimal inclusion of service users as equal participants and there is still a long way to go. Just to add to the list of barriers encountered as described by other respondents - there is the disgraceful need for many users to hide their involvement in any user movement as welfare benefits can be jeopardised if they are deemed to be able to do some work or, if any financial payment is made. Years ago a few charities at least would circumvent this by describing the little renumeration given as 'expenses' and by paying for hotels and travel. Those who spend much of their lives campaigning to help others should be celebrated and be able to be out and proud about their activities.

Competing interests: No competing interests

30 September 2016
susanne stevens
retired
glamorgan