The UK is in many ways in the vanguard of involving service users (and carers) in the development, planning, running and evaluation of mental health services. Managers and policy makers recognise the benefits to quality of services that service users bring, as well as the principle of consumers having the right to evaluate and influence these.
Star Wards was set up by a former mental health inpatient, and its approach and many of its ideas are based on the importance of patients being as self-determining as possible. Our primary interest is patients having as much control as possible over our situation while on a ward – our mental health treatment, what we do during the day, the relationships we experience. But we’re also concerned about the wider involvement of service users in planning issues from ward to national level.
The single most important consideration in involving users is appreciating and remembering that we have a different relationship to the issues. This is obvious and crucial. While sharing the motivation of others in meetings, conferences or on visits, we have a different history to the ‘contents’, often a very painful history.
1. Before the meeting
- Sometimes we’ll know much more about the issue than other people present. But often we won’t, especially if everyone else is from the same organisation as each other and is working closely on the subject. Either way, it’s important to have the chance to share and learn relevant background information before the meeting/event, ideally by phone or face-to-face.
- Having the same paperwork as everyone else obviously helps! Users can accidentally miss out, for example if an ‘internal’ email list is used or if papers are given out at an internal meeting and the service user is forgotten.
- Many of us find early mornings particularly difficult, so if it’s possible to avoid early starts, that’s best.
- Some of us will find getting to new places tricky, especially if we’re having an off day. Great directions are essential, but it helps if we’re offered to be met, whether at the station or the entrance of a complicated building or site.
2. At the meeting
- It’s usually best to involve two service users, or more if the meeting or structure is large. This provides different perspectives, mutual support, and the likelihood of at least one being able to attend if the other is unwell. It can be difficult to be or sound negative about services we are currently or might in the future be using.
- Being able to contribute to the agenda and/or planning not only makes us feel more involved and valued, but makes it more likely that these will incorporate issues and perspectives which create great services.
- Not assuming we don’t have knowledge and skills beyond being ‘experts by experience’. We’re of course also teachers, parents, architects, footballers… in addition to being users of mental health services.
- Latitude for us to describe our own experience and accompanying skill in extracting the relevance to the specific issues being described.
- The chair needs to balance finding and validating perhaps tangential points being made, and requiring users to have the same ‘meeting discipline’ as everyone else.
- Mental health service users are disproportionately big smokers. So it’s good to build in as many fag breaks as reasonably possible, and even for non-smokers, taking a breather from what can be very emotionally demanding occasions enables us to contribute our best.
- Participating in issues of mental health services can stimulate difficult memories, feelings and anxieties. It’s good to have the opportunity to discuss the meeting/event afterwards, in relation to its content and, separately, its emotional impact.
3. Between meetings
Keeping in touch
- This will depend on the extent of involvement, the emotional impact for each user and personal preferences. But phone calls or emails between meetings/events to see how we’re doing and how the work is going can be very supportive.
Giving a presentation, especially to a large group of strangers, is daunting for most people. (A survey showed that fear of public speaking trumps spiders, flying and being mugged!) But it’s especially demanding for us if we’re talking about very personal and distressing experiences. Things that help are similar to those that are good practice with meetings but tailored to this situation, eg:
- Being really clear about expectations about length, purpose and content of presentation and who the audience consists of, including size
- Being paid as much as the event can afford. This goes beyond the actual money and makes a considerable difference to how valued we feel
- Making sure someone asks us how we’re feeling before the presentation and answers any questions we may have
- Even more important is making sure someone asks us how we feel after the presentation. It will usually have been an emotionally demanding experience for us and may have stirred up particularly difficult memories and feelings. Sometimes it’s impossible to leave the room immediately after the presentation, but the option to do so should be given wherever possible.
The Samaritans recognise that their volunteers can feel very distressed about some of the content during some emotionally demanding sessions at their annual conference. Interestingly, they expect the session’s facilitator/presenter to have prepared how they would offer support to anyone who becomes upset. They ask presenters of these particularly tough sessions to let the organizers know so that they can arrange for someone to be available outside the room to support anyone who needs to leave the session early.
If highly trained, exceptionally socially skilled volunteers are provided with this support, surely it should be common practice for this level of support to be available for mentally ill people who are presenting what is often material very traumatic for them.
Best practice is to pay service users what you’d pay anyone else in that role, depending on its demands, level of expertise required etc. At the top end of expert involvement, the minimum charged by the voluntary sector for external consultancy is currently about £150 a day, although experienced consultants charge between £350 – £500. Because many service users are on benefits, they may not be able to get funding directly. Even alternatives which can be offered can also be considered as ‘payment’ and taken into account by the DSS, unless they are ‘one-off gifts’. Nevertheless, some agencies do offer payment in kind eg books, software, stationery (eg printer cartridges), subscriptions, vouchers (gift, travel), payment to an organisation nominated by the user, conference places.
Because the whole benefits’ issue is so complex, some agencies offer ‘welfare rights’ advice to service users about potential payments, while others have user development officers who are very clued up on all this.
Especially if service users aren’t participating from an organisation, it really helps to have the costs paid in advance or on the day. It shouldn’t be assumed that service users have bank accounts, so it’s best to offer people the choice of cash on the day or a cheque in advance.
Printing costs can be a considerable burden of involvement, and it’s always appreciated when we are offered hard copies of papers (especially long reports!) as well as being emailed them. Straight re-imbursement of expenses (travel, stationery, phone calls etc) aren’t counted for benefits’ purposes but receipts will usually be required and this is tricky for phone calls! Similarly, the costs of personal support should also be covered by the agency.
- Selecting participants or experts very carefully. Often having had direct experience of a mental illness and/or a particular service qualifies us to contribute effectively. But there are issues or occasions when each person needs to have specific ‘technical’ expertise, eg of finance, management, building design. Given the prevalence of mental illness, it should usually be possible to find someone who has both direct experience and whatever professional or other specific expertise is needed. It’s the failure to head-hunt successfully that causes the most difficulties with service-user involvement. (Not unlike making a bad permanent staff appointment.)
- Offering training, whether in the issues being covered in the meetings/project or more generally in meeting participation, leadership, project management etc.
- Imagining participation from our perspective and considering both what extra we have to offer and what else we might need.
- Offering more help than is probably needed, as it’s much easier for us to decline than ask for support, whether emotional or practical.
- Especially if there is only one service user present, it’s nice if one person bears their needs in mind, from making sure they’ve got the right paperwork to having someone they can go to lunch with if they want. This can be extended to providing a buddy/mentor if that is unpatronising and helpful in the particular context.
- Checking how we are on the day. This might be by the chair or ‘assigned person’, or by having a group ‘check-in’ at the beginning of the meeting, enabling everyone to say how they’re feeling, especially about the meeting/project/issues. Similarly, it’s great practice to have a check-in (check-out??) at the end of meetings.