Andrew Grundy – Thoughts on Patient and Public Involvement (PPI): Involvement in research has changed my life!

A few years ago, if you had said to me that I would be celebrating the publication of an academic research paper, I would have laughed. In 2007, attempting my MPhil nearly broke me, and this, amongst other life pressures, caused me to have a psychotic breakdown. I was in and out of hospital that year, and was eventually given a diagnosis of paranoid schizophrenia. That diagnosis felt like a death-sentence, and I felt hopeless about the future. My wife and kids and my faith kept me going, but my life was very different now – unpredictable psychotic episodes, plus medications that clouded my thoughts, made me feel emotionally numb and sedated.

ppi*

It was in December 2010 that a key-worker in a mental health day-centre I was attending approached me with a leaflet looking for service users and carers to be trained in research methods and design. The course was designed by researchers at the University of Manchester and the University of Nottingham. I wasn’t sure it was for me and whether it would lead to anything fruitful, but I decided to go for it. After an interview process, I was invited to attend the training – one day a month in Manchester for six months from January to June 2011. We looked at general study skills, the research process, literature searching, how to read a paper, qualitative and quantitative methods and ethics. I found it hard to concentrate at times, but I learned so much and really enjoyed the course. The course was actually cited as an example of good practice by NICE [1].

Following the training, in 2012 the research team invited me to be a co-applicant on a programme of research which would become known as ‘EQUIP: Enhancing the quality of user involved care planning in mental health services’ [2]. I then became a Research Associate in the School of Health Sciences, University of Nottingham in February 2013. I realised that the researchers wanted service users and carers to collaborate as part of the research team – that they actually placed a great deal of value on my own lived experience, and that this could be used to help shape the research programme. This for me is where my life really turned around!

As part of EQUIP, I’ve been involved in conducting focus groups and interviews with different stakeholders, assisting with the development of a new Patient Reported Outcome Measure (PROM) in user/carer involved care planning, in co-delivering a training intervention for mental health professionals, and am now involved in doing some follow-up questionnaires. It’s been so varied and I’ve developed so many different skills – it’s been wonderful. Outside of my part-time hours on EQUIP I’ve also taken on other projects, some of which are based at the Institute of Mental Health [3]. I’ve had some really great mentors: Prof Patrick Callaghan and Dr Oonagh Meade have been so very understanding and have really helped me develop and flourish. But it’s the ethos of the School of Health Sciences and the Institute here at the University that makes the difference – really valuing Patient and Public Involvement (PPI) in research.

I’m so excited that my very first academic paper, bringing meaning to user involvement in mental health care planning: a qualitative exploration of service user perspectives, has now been published [4]. It’s a topic that I have had a lot of personal experience of, and one that I’m particularly passionate about. But if it wasn’t for the PPI ethos of the University here and at Manchester, I would never have had this opportunity to do this work. I’m so thankful and can’t wait to see what happens for me next…

Andrew Grundy

Research Associate, School of Health Sciences

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* Puss in Boots Google doodle by Sophie Diao.

References

[1] https://www.nice.org.uk/sharedlearning/enhancing-the-quality-of-service-user-involved-care-planning-in-mental-health-services-equip

[2] The EQUIP project website can be found here: http://sites.nursing.manchester.ac.uk/equip/

[3] For example, http://www.institutemh.org.uk/x-research-/managed-innovation-networks/youth-mental-health-and-wellbeing-min

[4] Grundy et al., ‘Bringing meaning to user involvement in mental health care planning: a qualitative exploration of service user perspectives’ Journal of Psychiatric & Mental Health Nursing (Dec 2015) http://onlinelibrary.wiley.com/doi/10.1111/jpm.12275/abstract

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This blog-post summarizes independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (grant reference number RP-PG-1210-12007). The views expressed are those of the author and not necessarily those of the NHS, the NIHR or the Department of Health.

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