Service User Involvment Making the most of us part i

1. Service User InvolvmentMaking the most of us part i By Laura Jackson

2. Service User Involvement – Making the most of us part ii By Steve Matthews

3. What do you get with a Service User • Life experience • Service Experience • Medication Effects experience • Experience of condition specific hurdles in day to day life • In 4 words – Experience – lots of it.

4. ….but those were just the obvious ones • Blue sky thinking – anecdotal information on what people are doing to cope now, and the chance to dissect this information and look for future Research Projects based solidly in reality. A new perspective or a “fresh pair of eyes” • Matching priorities of researchers with the priorities of patients and carers. • Local knowledge and contacts for where Researcher’s can seek out potential participants and increase uptake. • Frank discussions about how things are, in reality, on the ground. • A more open discussion than you may achieve than when in the clinical setting with the Doctor/Patient interaction, and a chance to bounce some ideas around, though please be aware that some subjects could be triggering and it can take a lot out of us. • The ability to shape SUI for the future

5. Why does Research need Service User Involvment Checking Patient literature. Fine tuning the wording on website Chance to read certain research papers and put their feelings forward regarding the paper from a SU Perspective. Foresee problems before they happen as to regards how participants receive meds is a case in point Knowledge of a local patient meeting areas (eg local Mind Centre in Harrogate I used to attend). A well attended talk at Harrogate Mind regarding Labile has spread the word faster than any poster would - with a valid target audience, or friends at least, who would willingly mention to a friend, it was a well received talk, and reached many ears. At minimum this drew awareness that research happens in MH, and [LABILE was mentioned to me by a few people, professionals and SU, so I could pass on feedback and show active promotion has had a direct impact. Service User Involvement is advantageous for making sure that the Research disseminates through word of mouth, or a well placed poster. Who to direct an interested participant to contact. Letting people know that research happens for all in society, and emphasise the need to inform people that research happens and impacts future health care.

6. Get to know your Service Users • I have been in Services for 10 years and have a history of Severe PD that to this day has flare ups where for a period my symptoms are more pronounced. I can have mood swings and at times need access to the Crisis Team. OD at 13. Pychiatric Incident at 15. I am 34, single and live on my own in Social Housing. I don’t leave the house much and have had a long term dual diagnosis that I am only now starting to understand. I am currently on Olanzapine, Mirtazapine and PRN Diazepam and Promethazine. Participated in the treatment arm of the PEPS trial. I am waiting for Psychological Therapy with a Psychologist. I have been under CMHT for approx. 9 years. My friends would say that I’m always “in flux”. I have had trouble with maintaining relationships on both a work and social level.

7. By now you may have formed some sort of opinion on me based on medical background and previous trial involvement.But you also get this…. • CV / Personal Statement • For Steven Matthews, 9 Park House Court, Park House Green, Harrogate HG1 3JT 1990 - 1995 Ripon Grammar School 10 GCSEs a* to b grades including Latin, all the sciences and music • 1995 - 1997 Harrogate College A Level Law, Politics, French, Business Studies, General Studies a - c grades • 1995-1997 Care Assistant 30 hours a week whilst studying • 1997 - 1999 University of Northumbria Nursing Degree (Not completed due to circumstance) • 1999 - 2000 Telesales Advisor for BT • 2000 - 2002 Internet Support Advisor for www.theAA.com (Automobile Association) • 2002 - 2003 Sales Advisor WCF Fuels • 2003 - 2005 Chef @ the Stag Inn • 2009– 2012 Volunteer chef @ Harrogate Mind including weekly meal for 20 on a Monday and 70 + at Christmas • 2013 GCP Training @ Middlesboro Thomas Cook • 2013 Leadership course for Service Users and Carers (On-going until March 2014) • 2013 to date Monthly PPI Involvement Worker on the Labile Study under Professor Joe Reilly (on going until 2015)  • 2013 To date Bi-Monthly PPI Involvement on the Service Users and Carers research steering group, NE Hub • 2014 Attended MHRN National Scientific Conference and made a presentation based on keeping the MHRN Hub NE steering group, and the eclectic mix and experiences were invaluable and needed to be brought to some mportant peoples attention. , along with the fact we need to work on a level where constructive criticism about potential pairing of 2 Divisions which we are jut as in the dark, as I feel many of them wood. • To come in 2014: Talk on making the best use of Service Users in research at R&D Conference •                            Providing feedback and constructive input on upcoming MH research Projects and direct input into changes to the new LCRN as part of NE Hub for SUC, soon to be Division 4 •                            Further input into upcoming MH research studies under Professor Reilly and development towards becoming a Lay Researcher and volunteer with the trust • Interests: Falconry, Formula 1, Moto GP, Cooking, Photography, Dogs, Fishing, All music, thought Moulin Rouge was never surpassed, Battle Royale is good too, Listen to audio-lectures from Harvard on Particle Physics, classical physics,Stephenhawkin , and understanding that academia was something that I crave and that need to engage my active mindinconstructivelyinstead of letting it loose on your . comes to me. I have piercings and tattoos but they are more a private thing that I had at milestones, mainly good, not sure where the nipple piercing impulse buy a year and a half ago came from that was more inflicting and saying have you got the balls when nthe freeze spray wears off man you know you weren’t born like that! Look past the pitercings and help people accept tha this in certain at

8. What are we aiming for? Symbiosis n.pl.sym·bi·o·ses 1.Biology A close, prolonged association between two or more different organisms of different species that may, but does not necessarily, benefit each member. 2.A relationship of mutual benefit or dependence.

9. What I as SU have got from involvement with Labile Recognition that I am capable of performing more than a year ago Gentle introduction back into the professional work environment Being able to tell my daughter I work in Research gives her pride too and Confidence to make an Application for Open Degree in Mathematics and Statistics as module 1 and science as module 2 with aim to complete in 3 years not the 5 most spend on an OU degree. A supportive and lovely team of people around us at the Labile Management meetings who have made us feel welcome and equal within the group. • Self esteem returning after prolonged absence (Think decades not months) • Increase in self confidence and being valued • A reminder that I am still capable of performing a valuable role in society • A feeling of self worth – giving something back feels good • Being put back in touch with my abilities that I had forgotten I had, expanding my academic knowledge and realising that my PD is not going to destroy my chance at achieving where I was heading for in life.

10. The question that I asked the Labile Management group (admittedly at short notice) was “what surprised or impressed the researchers we have been working alongside, having had our input from the beginning, pre-launch included, of LABILE?”

11. “You have both told me how you find it of therapeutic benefit when you are working on Labile. There have been times when you have had set backs with your mental health but you have continued to keep your commitments to the study displaying resilience, strength, determination and always with a positive approach. It is because of things like this that I feel you are both so important, as you are both experts by experience with a strong work ethic. Many many thanks to you both for all of your hard work, and I hope that others will be enabled to follow in your foot steps !!” • One unexpected but welcome outcome from having active Service User Involvement in a Trial :

12. Another unexpected but welcome outcome from having active Service User Involvement in a Trial : • “Working closely together with you in a trial management group on the practicalities of the trial brought opened my eyes to bringing in volunteer researcher roles to work with us.  We’re progressing this now with yourselves, and hoping to expand it further based on your experience.  This would never have happened without your involvement in LABILE”

13. And yet another unexpected but welcome outcome from having active Service User Involvement in a Trial : “For me it's difficult to pick out individual things because the value is there across all decisions, but I do remember some very simple, to you obvious (to us not) advice about the website which Imperial were setting up. The perspective from you and Laura that said this information is not conveying what it intends to and indeed, it may mislead”

14. And one last unexpected but welcome outcome from having active Service User Involvement in a Trial : • ‘Looking at mental illness from the perspective of clinician means that the focus can be on outcomes that may not be relevant to the individual experiencing the mental illness. • By having the perspective of those suffering we can keep our spotlight on what is important in terms of improving quality of life and the process of moving towards wellbeing from those experiencing the disease. Having PPI involvement keeps this grounded view present at all times.’

15. What we need to work together effectively • Introductions to the team using first name terms as an initial leveler, and to recognise the service user being as much a valued member of the team as a paid member of staff. SUI is about a lot more than ticking boxes in research grant planning • Training made available - a sort of fast-track to what research is and isn’t, and a focus on being able to be effective in meetings, and how a large organization functions in practice. GCP Training, an introduction to leadership course, and the support of the whole management team when we had questions has all improved the opportunity for the meaningful, healthy, symbiotic relationship to flourish. • An understanding that each Service user will have a level that they are happy contributing at, and each will have a threshold of how much a meeting will take out of them. This is also likely to be a fluid and constantly changing, so use your interpersonal and professional skills to be aware of when too much is being asked from them. This could be on a practical level, a work related issue or an interpersonal issue, and may well be a complex issue that needs to be worked through • I personally found that having a task to complete in-between face to face meetings helps keep focus, others may not want this. It is a discussion you will probably need to have with the SU, and expect this responseto be fluid too. • The supportive environment within the research team has enabled me to attend meetings even when unwell, and recognition from the staff that our input has really been an asset to the Labile Trial and beyond. • Ensure politeness and respect all views. If the SU impresses you at some level, just give them the pat on the back they deserve outside the meeting – it will make their day! • Add “AOB” at the end of any meetings – we may surprise you and it helps provide an outlet for issues not directly relating to the meeting in point, but where some interesting conversations will be had, and hopefully future treatments germinate from the information and discussions that follow.

16. In Summary…..SUI is an open book .With flexibility, and a need to keep it meaningful at the heart.Remember Most are volunteers and may have travelled 2 or 3 hours to attend meetings. Feeling left out would soon cause problems and defeats the point of SUI, so encourage them to feel able to speak freely at meetings.Put your preconceived ideas aside. Recognise it’s a professional yet very personal relationship which must benefit both, and as we learn more about what SUI can achieve, then we will learn new information about what SUI can bring to the table, beyond the obvious.We are on a learning curve and although kid gloves are not necessary, recognise that aSUworker may need gentle handling at times, as very tough subjects are potentially discussed - not deliberately, but many of us have triggers .And for professionals to remember that there are very likely SUIs in your academic debates, so keep your comments considered and remember there are Lay Researchers, SU + Cs in attendance.Many will have skills both practical and academic, which are transferable from previous employment and education. These may be skills that they “put to bed”, but so much more can be achieved if you can help wake these dormant skills. Their intellectual ability and lived experience will help you to make the most of each of their strengths – both as a SU and as a life experienced human being. and someone that you can consider you work with and not over!

17. So: Get to know your service user – you may be surprised quite what you get with them! And remember that we are all on a learning curve to discover best practice for SUI in research, and that shared value drives us on.

18. Service User Involvement: MakingResearch better, together