It’s co-production week! Here is a handy how-to for any service users, survivors or otherwise-identifying loonies thinking about getting involved with their local NHS trust or research organisation.
1) Be mad enough that your lived experience of madness can be co-opted and used for foreign-to-you agendas.
2) At the same time be responsible and composed enough to hold down a service user representative’s job.
3) Be very, very reasonable. Do not show any emotions when discussing services you rely on to keep you alive and/or services which have traumatised you so much you want to die.
4) Likewise, do not display any emotion when you are exposed to a constant stream of micro-aggressions and attempts to silence. This is called “being professional”.
5) Shower (at least before meetings).
6) Be grateful:
a. Be so grateful for being heard that you learn to live off the power of your own gratefulness. Do not request a living wage.
b. Honorarium payments might be stopped to avoid service users becoming ‘dependent.’ Don’t question if clinicians are dependent on their salaries, it’s different.
c. Payments affecting ESA? It’s your responsibility to know how the trust will pay you and whether it will result in compliance interviews and sanctions.
d. Accept with gratitude the realms of white A4 you are given to read before each meeting taking hours for which you receive no acknowledgement (let alone pay).
e. Be grateful because no other people paid as little as you do get to sit at the tables you have the privilege of sitting at (whilst being ignored and patronized).
7) Listen to the wisdom of the professionals. You should also expect them to ensure the next meeting date is set at a time they can all do but say, “Well we don’t all have to be there” if you can’t do it.
8) Don’t be offended if someone pats you on the head and gives you some tea and a biscuit. It is for their benefit, not yours.
9) Do not under any circumstances dare to read up about your subject, quote relevant literature, or ask why involvement in your organisation does not acknowledge the work of people with lived experience, or seek them out to lead projects. You will be replaced by someone who is closer to the ideal service user – suitably compliant and ensures the pesky service user tick box is filled.
10) Accept the privilege you are granted (for all the wrong reasons).
11) Put aside any expectation that structural inequalities between service users will be acknowledged or countered. E.g. do not request that meetings and training are held in wheelchair-accessible venues.
12) If you are not recovered enough to be socially acceptable, please ensure you conceal this in public.
13) If you are presenting at a professionals’ conference and you have scars, expect to be asked intrusive questions in public and do not tell the asker to fuck off. This is also called “being professional”.
14) For every comment you offer that challenges the status quo, balance this with something that reaffirms the mental health nurse hero narrative.
15) Be a white middle class woman OR pass as a white middle class woman – actual economic capital is optional. NB do not expect any sexism from other service users to be defused by professionals in the room.
16) Remember that when it suits we are all human and all experience distress and are the same. This is collaboration, we are equals. Until we are not. Then you are some kind of personality disordered subhuman who is not to be believed or trusted and will have no say in the decision making.
17) Be prepared for even the critical folk to view you through the lens of your label.
18) Smile and laugh at hostile insults related to your diagnosis just after you have disclosed it.
19) Don’t object to non-person-first language such as “self-harmers”, “BPDs” or “frequent flyers” – that is just your diagnosis talking.
20) You are welcome to get involved with trusts. But be aware they reserve the right to contact your clinician or check your notes to attempt disprove what you tell them.
21) Be prepared to be told at your next needs assessment that your social needs are all met because you sit on committees with real working people.
22) Expect the professional liberals you thought were ok to shuffle papers & look the other way when you call out their colleagues’ discrimination.
23) There’s opinion, clinical opinion and “just your opinion”. Please note that the gold standard of evidence does not include service user evidence and Randomised Controlled Trials rule.
24) Accept that no matter how many other SUs you have consulted with the views you bring will never be representative of all patients, but one clinician speaks for all clinicians.
25) Be prepared to dedicate all waking hours to try and make a difference only to still be treated with utter contempt in your own care. Don’t get frustrated, it’s probably your own fault. You are not working hard enough on your skillz.
26) People will be paid more to listen to your experiences of being traumatized by the system than you will ever be paid for sharing them. Deal with it.
27) Accept that your successes will be used as a stick to beat other service users with, while your weaknesses will become evidence that it is unwise to involve service users at all.
28) You may well find yourself in a position where you feel hated by clinicians for being challenging but also silently hate yourself for feeling like you have sold out.
29) As a service user you can never possibly understand the time and financial pressures of the NHS. If we tell you we need an expert by experience with a diagnosis of schizaloopia to attend a far-away village at 8am tomorrow morning having read a 40 page document and you think that’s unreasonable, it’s because you don’t understand. Be grateful we asked you.
30) Finally, remember: everything that hurts you is outside the trust’s / university’s control. Everything you like is down to their hard work and professionalism.
HAPPY CO-PRODUCTION WEEK!
This is covered by a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) License