Ten ways to make service user participation more meaningful
I’ve been to a few events in past months as a patient/service user representative. Some events have had a specific mental health remit, others have looked at the wider NHS, but either way the focus has been on improving individuals’ treatment journeys. So why is it that some of these events have left me, the patient in the room, feeling like something of an afterthought?
I guess it all boils down to the fact that although the invitations were well-meaning, the organisers had not properly thought through what it would mean for someone with significant mental health problems to attend their event. In no way did I doubt the sincerity of contributors; some were positively evangelical about person-centred care. But “person-centred” shouldn’t be an ideological mantra, it should be something you practice daily, including making service user attendance fundamental to your events. Leading by example is important. If you don’t treat service users as central to your event, and visibly so, how can you expect the doctors and nurses and social workers and commissioners present to go away and practice what you have been preaching?
Here then are some practical suggestions for making sure that service users are central to your event, and not just an add-on to tick the patient participation box. I’m sure I haven’t thought of everything, and I hope others will comment. But if you are a health event organiser, paying attention to these 10 points will make your event much more easier and less scary to attend, and that radically improve the quality of involvement service users are able to give.
1) Think about the timings. The last event I attended started at 8.30am. Getting up and out of the door for 7.30am on extremely sedating medication was an unpleasant challenge. People who take psychotropic drugs tend to function best when they’ve had a chance to sleep of their “medication hangover”. 8.30am is also bad for anyone with some form of anxiety who struggles with rush hour crowds; again, fighting down panic simply to get to an event isn’t the best frame of mind from which to contribute effectively.
2) Give us plenty of notice. Yes, we have mental health problems, but this doesn’t mean we have nothing going on in our lives. Short notice for events can make attendance difficult for those of us who have jobs, require childcare, have caring responsibilities or need to organise someone to support us in order to attend.
3) Think carefully about your venue. Try not to always hold your events in London, unless you only work with SUs from London and the southeast. Are you holding your event in a nice hotel or a plush conference suite? Try to see your venue through the eyes of somebody who hasn’t worked for a while and who might be subsisting on benefits. How does it look now – luxurious? Or over the top? Intimidating?
4) Provide practical support for travel. Paying out for long distance train travel and then waiting for expenses to be paid can be impossible for people on low incomes. Could you arrange to buy tickets in advance and have them sent to us? Think too about the impact of additional hours of travel. Living with a mental health problem can be extremely fatiguing, and early starts or late finishes are difficult enough without hours of travel on top. For some people this can be best managed by being booked into a nearby hotel the night before an early start or the evening after a late finish.
5) Facilitate connections. I’ve been to events where I knew nobody at all. That can be challenging enough for the most mentally well person, but when you factor in issues like low self-esteem, social anxiety, communication difficulties or low mood, expecting a SU to put themselves out among the crowd and network is unrealistic. Support measures don’t have to be difficult. Brief staff providing welcome packs and name badges to look out for SUs attending and give them an especially warm welcome. Identify someone who can act as a buddy and make some introductions to people who might have similar areas of interest. If the buddy sees us standing alone at coffee, s/he can check if we are OK and if necessary effect another introduction.
6) Acknowledge our presence and publicly welcome us. I was at an event last week that was all about improving primary care mental health measures. I have absolutely no doubt from his presentation that the guy who opened proceedings wants to put SUs at the heart of care pathways. He’s the real deal. Yet when he listed the stakeholders present at the event, he ran out of groups to name-check before he got to service users. Making us feel like an afterthought undermines your credibility in the SU community.
7) Large events can feel very overwhelming, and sometimes we might need to do things to manage our mental health (a quick meditation, swallowing our meds, phoning a partner or carer, breathing ourselves down from a panic attack) that we don’t particularly want to do with a hundred other people in the room. Sometimes, the content of an event can be unexpectedly triggering and the only way to avoid crying in public is to withdraw. This means a designated quiet space, even if it’s small, can be incredibly helpful. No one should have to use the toilets as a place to gather themselves before returning to the task.
8) Don’t expect us to be dressed like you, or to be comfortable around people dressed in suits or heels. Bear in mind that some SU activists have very negative experiences of power structures – not just mental health, but the DWP, education, criminal justice, etc – and their input is as important as that of the service user who communicates easily with doctors, NHS managers and commissioners. It’s your responsibility to draw people out and try to make them comfortable if they seem reticent or ill at ease, otherwise your opportunity to learn from them will be wasted.
9) Keep jargon to a minimum, and where it must be used, spell out what you mean. I know it’s your daily bread and butter to talk about CQUINs and KPIs and clustering but these are “backroom” terms, and we don’t often get to see the workings of the backroom. Bandying them about with no explanation can make us feel as if we’ve been invited into the backroom, only to have the door shut in out faces at the last moment.
10) Pay us something. We’re not usually expecting a huge consultancy fee, but remember that essentially that’s what we are when we come your event – consultants, who have given up a day or a half-day to share our experiences with you. Our experiences are valuable, or you wouldn’t have invited us, and so therefore is our time. Even if everyone else in the room is attending as part of another job role, they are still being paid and not paying SUs marks us out as of lesser importance than any other stakeholder group. If you want to know what might be considered reasonable, Mind and Rethink Mental Illness give activists £50 for a half day and £100 for a full day and tend to negotiate this rate on behalf of activists who are sourced through them. Do bear in mind, however, that even this small amount can cause problems for those of us on benefits; when on ESA I was only permitted to earn £20 per week and a £50 payment had to be given to me in three separate chunks over three weeks to avoid losing benefits. Consider offering flexibility in how you offer payment, for example high street vouchers rather than cash.
I’m really keen for others to come up with more ideas but in the interim, if you’re an event organiser: are you ready for the challenge of elevating service user involvement above the tick box and making it truly meaningful? I really hope so.
Courtesy of Charlotte Walker at Purple Persuasion