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.

 

 

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About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
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18 Responses to Ten ways to make service user participation more meaningful

  1. Amanda says:

    Hi Charlotte.

    Good set of broad guidelines, and hopefully others can come up with even more.

    I too believe that service user involvement if not properly thought out runs the risk of being nothing more than a tick-box exercise.

    Even more than that, it can actually do much more harm than good, if not done properly.

    I think part of this will be that any person who follows any guidelines for service user participation, does keep it person-cenetered, and in doing so ultimately remembers that each person is an individual – and that for every person who meets a certain criteria that they maybe need to take into consideration, there will be just as many who don’t meet that criteria.

    To not make any assumptions either way, and not put ‘service users’ into boxes, and instead really keep it truly person-centered.

    In making any adjustments which may be aimed at making service user participation more meaningful, they should be careful not to imply that this is for ALL service users as that in itself will take away from a person-centered approach.

    Point 10 strongly reminded me of a recent interaction at a focus group being run by an anti-stigma organisation. This organisation had designed a new role, which they wanted feedback on from the focus group. Part of the requirements of the role was that it was best suited to people with lived experience of mental health problems. It was a voluntary role.

    One of my feedbacks was to ask why it wasn’t paid. That the role looked like that the person would have a lot of expertise to bring to the role and that surely that should be recognised, particularly if the funds were there to pay them. The response was that ‘it had been raised, and was under discussion but it was difficult as it would affect the person’s benefits’. Not ‘it would affect the person’s benefits IF they were on them’. Just ‘it WOULD affect the person’s benefits’.

    As you know, I’m a bit of a stickler for detail – and maybe this was bad wording, but I was left with a very bad feeling of ‘is this anti-stigma organisation making the assumption that just because a person has a lived experience of mental illness they will be on benefits?’ I accept that many will be, and that it was likely just bad wording of the sentence, but how that sentence was phrased actually does matter. Even more so from an anti-stigma organisation who really do need to practice what they preach.

    The issue is that assumptions shouldn’t be made either way on any of these, but that the service user involvement should be designed in such a way that is truly inclusive for as many as possible – if not all.

    Definitely wasn’t meaning to turn this into a rant, so hopefully this is a constructive addition to what you’ve written above.

    • No, really helpful comment – generally I would say, “If in doubt, ask the individual.” Problem with that is that you have to know about an issue to ask about it, I guess. The payment thing is probably quite a sticky area in terms of there often being no budget, and if there’s no budget that’s one thing…but being “under discussion” without the full facts or not having properly thought it through is definitely not OK. At least if an SU knows there’s just no budget they can make the decision about whether they wish to participate.

      • Amanda says:

        I agree. ‘No budget’ is a completely different scenario, (and one I’ve no real issue with, since I do quite a bit of voluntary work) but was not impressed by this automatic reaction at all.

        (So much that could be said about ‘no budget for it’ in some areas, given the existence of a budget for many other things that are perhaps given a higher priority, but that’s a whole other story in itself 🙂 )

        I agree with ‘if in doubt, ask the individual’, but just not sure how practical it always is in reality, but where it is practical to do so it’s certainly a good starting point…

  2. Mary says:

    Oh dear. Having read this I suspect I would not put myself forward now to attend such a function. With all these provisions in place I think I would feel very patronised and stigmatised.

    • Really? Why on earth?

      • Mary says:

        The thought of being highlighted on a welcoming list as being there by virtue purely of my mental health would make me feel anxious before I started. I accept others may find these provisions helpful. However I don’t see why these added offerings might not be appreciated by all attendees. To distinguish between those who are SUs and those who are there for other reasons (perish the thought they too might be SUs) I feel creates a divide.

        Frankly I find the last point about payment really quite offensive; I have received a lot of treatment and care courtesy of the NHS without making any payment. I would welcome the chance in however small a way to make some small contribution and so say thank you. To think that the only way I might feel valued is by being paid would leave me feeling very demeaned. I see the care I have received as a two way contract: you help me Mr NHS and I will do my best to offer constructive feedback. And neither of us has to pay. Somehow, I still end up the winner.

  3. Tempest Rose says:

    I love this. I’ve been struggling with my mental health for 10 years, but I literally just this morning took the first step in getting treatment, so I can’t wait to see what that entails (and by can’t I mean would prefer to but actually can’t. haha).

    I think you should turn this into a letter and mail it out to everyone who matters and everyone who cares.

  4. Thank you Charlotte- so many things I think every time I go to an event that is set up/organised by professionals. I think we need to be more involved in setting the agenda/programme. Nice / Good to be invited to speak but how about inviting us to a planning meeting? Posh hotels/venues don’t phase me.

    I want the feel good experience of quality snacks and in a nice environment. Even with my Nikes on! I have no firm views on a special thing for SUs where a buddy is assigned. I think it should be on offer but not have us pointed out either as we walk through the door. Some need support some don’t. It depends on a good/bad day or general confidence.

    A def good thing would be the quiet/breakout room. Travel expenses- oh yes….don’t get me started. Many organisations don’t do cash at all as their finance dept won’t allow it ie KIngs College. My response is then the claim form should have a fast track mechanism attached to it . Good liaison in advance with a senior manager in finance would really help sort this. One amazing person at Institute of Psychiatry has on occasion got money from her bank a/c to mine as I waited ages for KIngs to process!

    Payment- Yes we should be paid. BY voucher or otherwise. I do lots of unpaid work ie for BEAT as a group worker/set up and run a BEAT group In North London for last ten years- involves commissioning and other intensive work plus supervision, and I employ two assistant psychologists and interview, screen and recruit plus local Trust work and local SU group work…… but we have real EXPERTISE. I have a local senior counseling psychologist ring me often for advice on SU issues re clients of his……he never pays me but he offers expertse in return when I need an opinion on a matter and buys me good coffee……He has now appointed me to a Board of Advisers in a new Counselling Psychology service and I will be paid for every meeting attend the same rate as the professors etc if I want that amount.

    Others around a table are getting paid to be there- it feels unequal to expect time, energy and effort and the knowledge and experience at a local or higher level for no form of payment. However generally other organisations need to sort it. we saw in MARD that it can be done with ESA etc.
    There are many SUs who are altruistic and that is very lovely but that is their own business. I would ask them if they did higher level work and spent hours, days etc preparing slides, handouts, seminar notes and reading though policy after dry policy- would they feel used if they got no recompense for their efforts if this went on year after year and most around the table are getting paid?
    I got amazing treatment from the NHS not just fo my BPD at an internationally acclaimed treatment unit in North London bt also for my diabetes, pain management etc and I have a great primar care set up. However does that mean I give back completely without any financial reward forever?? Do GPs say oh the NHS paid for my training so why should I not make a decent salary ? They work their butts off and most earn far less than the Daily Mail would have you believe – off the poit but I am saying lets not get into them an dus and because it is “us” we don’t need or deserve!

    One last point – at events if you are a professional and you come to a SU orientated event and are a key note speaker don’t disappear after coffee ……stay and mingle, network and talk with us.
    could name and shame a few who have done this this year but won’t as I don’t believe in Jeremy Hunt!!

  5. csh says:

    Always such well-written, fascinating posts Charlotte. Thanks for another one!

  6. Myrtle says:

    Something that strikes me from this list is that mental health services themselves actually make these mistakes, and it’s inexcusable.
    For example, I’ve been refused help from the CMHT because I missed appointments – precisely because of my problems. They offer appointments at such short notice it’s very difficult to find someone reliable who can accompany you if necessary.
    Also, they seem to forget that surrounded by them with their power (and I have a known history of traumatic experiences with services/police) is a very difficult situation and it’s so hard to speak up for yourself. However, if you can’t be coherent or get confused they get frustrated and say to talk to them “when you are calmer/feel better”.
    Basically services are disgned to be navigated by the mentally well, articulate and determined ONLY!

    • It just struck me today that I do often get asked if an organisation can help with travel to appointments (not always, but quite often) but nobody EVER asks if I am OK getting to the Recovery Team offices for my appointments…!

  7. Jessie says:

    Hi 🙂 I have read a few of your posts and think it is amazing that you are sharing your experiences of going through a mental health issue with the world. Many people don’t know enough about it, however with blogs like these they will soon start to realise the truth of mental illness.

    I am sixteen, and throughout my school life, the issue of mental health wasn’t broached almost as much as it should have been. This is why I set up a petition asking the government to enforce a law, making it compulsory to learn about mental health in schools. So far I don’t have as many supporters as I would like, but I am hoping that with the support of others, I will soon get there. I was wondering if there was any way you could please check it out and maybe help me to promote it. I think it is a hugely important cause and something that needs to be addressed. The link is https://www.change.org/en-GB/petitions/nicky-morgan-the-department-of-education-make-mental-health-education-compulsory

    Thank you.

  8. Orare says:

    I am not currently involved in consultation but after years of being a service user representative I now have two bottom lines.
    The first is: is there a budget to cover the costs of service users participation? If the organisation isn’t prepared to spend money, chances are they are not going to value or act on feedback. The budget can include payment for service users expertise, travel and accomodation costs etc.. Ask your service user what works for them. Nothing like talking with people to avoid misunderstandings.
    The second thing I look for is a committment to act on the feedback and information provided by consumers. I spent a year in a consultation proccess where not one of the service users reccomendations were acted on. We were told other stakeholders had to be considered. How the organisation responds to this request will tell you a lot about what is likely to happen.
    It would be lovely to assume good will from services but our work and time is valuable. Lets spend it where it is likely to be effective.

  9. Steve Furber says:

    Thanks for this, very instructive. I would only add that some of the other attendees may not feel very relaxed in some of the environments that you describe either. I’d really like to share this blog with colleagues so will be doing so when back to work. Canterbury and District MH Forum , a SU org certainly share at least some of your ideas.

  10. butterflywgs says:

    Great much-needed post. I so relate.
    I think I have got the ‘how to dress’ bit right now, after oh, only 3 years of service user involvement :-/ having done every look from smart because ‘OMG WORK, MUST IMPRESS’ (the same sort of thing I used to wear when I was working f/t before I became unwell, so, heels and black trousers and smart top etc) to ‘whatever was on the floor and clean (ish) because I only just got out of bed and made it to the event at all’. People know this; when I dressed smartly I was assumed to be staff.
    As for the timing thing, YES. Why DO they have whole-day 9-5 events? For me this went like this: Before 11am: arrive late (because as you said, meds, sleep pattern), require 2 cups of coffee to be anything resembling functioning,
    11am-3.30pm: be at my best – relative to current level of health, and comfort level. Even at my best I’m socially anxious so challenging what ‘professionals’ are saying if necessary would be difficult, sometimes I wouldn’t realise something they said was f&*ed up and needed challenging until hours later. And even at my best, I’m (too) sensitive to being patronised; you know, those staff who practically ‘aaww bless, you’re a service user? I will speak to you as if you are 6’. To which I want to inform them that I have a Masters, which is probably more education than they do (I restrain myself, because this would be put down to ‘service users are so temperamental and difficult’). I may also be triggered, and it’s a lot to ask of anyone to challenge
    Power differential: something they do not address anywhere near enough.
    After 3.30/4pm I am likely to be too drained and exhausted to contribute anything and just want to go home. (If I’m not hypo, that is).
    It usually takes me a couple of days to recover.

    7 – yes. I have been fighting back tears in meetings because something unexpectedly triggered me.

    Mary, I think Charlotte meant – acknowledge SUs are present. Not – nanny the poor dears.

    Orare, exactly – I’ve had enough of this too – ‘involving’ SUs just to tick the ‘involved SUs’ box, ignoring everything we say.

    Service user involvement: it has a lot of room for improvement, as I recently drunkenly ranted to a senior involvement person at my Trust in the pub (pub is near work, I was there with other SUs I am friendly with, he was there with presumably colleagues, I had never met him before but he recognised another SU and came over to chat). I may send him the link to this (if that’s OK?)!

    And Myrtle, I hear you – relate to SO much of your comment. ‘Not engaging’ often means ‘needs more help’, not ‘doesn’t want help’. Power differentials; they exist, and matter. I have been treated like crap by the ‘professionals’ – and they wonder why we’re suspicious?!

  11. Pingback: Ten ways to make service user participation more meaningful | Life Is A Question

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