19 May 2014
Re: Patient and Public Involvement in Research Strategy January 2014
The National Survivor User Network (NSUN) was asked by the Manchester Users Network (one of our member groups), to provide comments on the above strategy.
This was in relation to the definition of ‘Service User’ on page 5 and the serious concerns from ‘service users’ that the definition used was both excluding and restrictive in terms of involvement.
Summary of comments:
- It is encouraging that Manchester Mental Health and Social Care Trust has developed this policy. It would definitely benefit from wider consultation and discussions. The language of involvement and participation appears to be mixed and it isn’t clear if the definition of ‘service user’ is for all levels of involvement in the research process and/or for participation in research – as participants.
- The different levels of involvement in research are not explained. Obviously there may be good reason for setting criteria for involvement for specific projects and studies. However, a blanket definition is widely perceived as exclusive and restrictive and not a genuine framework for facilitating purposeful and effective involvement.
- Heading 3 Operational Processes in the policy – could include the need to have a clearly defined role description and person specification for each involvement role that sets out expectations of the post and criteria for the individual, that are appropriate to that particular post – St George’s University of London Steve Gillard (email@example.com) http://www.sgul.ac.uk/research/researchers/g-k/steve-gillard/research-methods is a good reference and contact regarding working with service user researchers and co-production etc.
- It would be more appropriate to leave the definition of service user open but perhaps address the issue of recent experience of services following the ‘purpose’ page 3 in the 4PI document (National Involvement Standards) http://www.nsun.org.uk/assets/downloadableFiles/4pi.-ni-standards-for-web.pdf – a practical and critical framework developed by service users and carers.
- It isn’t clear about terms of involvement or payments. Are payments/fees in line with consultant rates or a general service user and carer involvement policy?
Further information for the Trust:
- Beyond the Usual Suspects – Shaping Our Lives
- http://www.crn.nihr.ac.uk/ for policy and involvement in research
- Model Payment Policy: http://www.crn.nihr.ac.uk/Resources/NIHR%20CRN%20CC/Images/New%20about%20us%20section/MHPaymenstPolicy4.pdf
- MHRN Service Users and Carers Payments Policy: http://www.crn.nihr.ac.uk/Resources/NIHR%20CRN%20CC/Images/New%20about%20us%20section/MHPaymentsPolicy1.pdf
- National Institute for Health Research and Policy Research Programme Patient and Public Involvement Plan: Purpose, objectives and work(April 2013 to March 2015) http://www.ccf.nihr.ac.uk/PPI/Documents/CCF%20PPI%20Plan%202013-15.pdf
- Examples of User Controlled research – Shaping Our Lives
Our vision is of a future where there is ‘nothing about us without us’: where effective and meaningful involvement in all aspects of our lives builds resilience and changes people’s lives; where there is genuine partnership working between mental health services, professionals, service users and carers, based on agreed and shared outcomes; and where this partnership of expertise works towards common goals of respect, recovery, choice and control for each and every individual who comes to use mental health services. (National Involvement Standards, NSUN 2014 – DH funded)
I hope this is helpful and also illustrates the importance of ensuring the experience and expertise of people is maximised and rather than minimised.
It’s good they have a policy but it appears it is written by people who have little experience of Patient and Public Involvement (PPI). There are some stock copy and paste sections (e.g Professor Sally Davis quote/text). The language of participation and involvement is mixed up and there’s no clear distinction between participants in research and involvement in the process.
The policy is a little thin in that it could be achieved by holding a one day event! There are no measurables, for example saying we will embed patient experience – but not saying how or what will be done to achieve that. No budgets or costs and no names against responsibilities for delivery.
Payment policy is unclear – will service users involved as researchers be paid according to the going consultancy rate or in line with the service user and care payment policy if they have one?
The MH Trust here is going through a similar process and, I think for most Trusts, this seems to be primarily geared towards improving recruitment to research, but with a modest nod towards active involvement in the research process. The problem for me is that there is a lack of acknowledgement that involvement can take place on a number of levels, and that the approach to recruiting, supporting, employing, remunerating people would appear to be the same whoever and however someone is involved. The restrictive definition of service user clearly reflects that undifferentiated approach. I wonder if one possible way to address that would be to suggest – perhaps under heading 3 (operational processes) – that there should be a clearly defined role description and person specification for each involvement role that sets out expectations of the post and criteria for the individual that are appropriate to that particular post? There is the scope to specify something different where the role clearly requires that. That is something we have done here that people seem to appreciate.
I have been a victim of this from more than one Trust. They think you are sort of used up and your experience no longer valid. Although it is certainly good to
include people who are new, discarding the old is stupid as so much knowledge is lost. It is difficult not to be suspecting that one aim is to get rid of knowledge which gets in the way–as service users learn more they are indeed likely to gain a voice and be critical. There are many ways to include a wide range of service users without great cost–reflections could be placed on Trust websites–good advertising for good Trusts….Trusts can thus show they are confident and they are doing a good job and have listened to service users and acted on their advice. This would be much better than making rules for how long your voice remains valid!
Do hope they can be successfully challenged!
Yes, I have come across this quite often as well and I think is often a way of people excluding those who may appear to be more ‘troublesome / assertive / challenging’ …. Rather than working with those people and offering more adequate support to really listen to what they are saying rather than dismissing them as their use of services may not be current. As you say, recent / current use of a particular service may be essential for some involvement opportunities but that doesn’t mean they should be excluded from all.
Not sure if this helps or not … maybe there’s something about collectively empowering those people who may be likely to be side lined by further supporting them to reach out to others, know their rights and be able to stand up to issues such as these assertively?
The question of whether individual or collective perspective is required is important. But the key issue for me is what these documents consider user involvement in research.
I have found that, if the work is about service experiences, audits of service satisfaction, evaluation of current Trust (or other organisation) related functioning etc., it is useful to set time limits of engagement (‘service use’) so that people who are involved are able to participate. Even this is a limited way of
looking at things as, inherently, this definition assumes that service users will be involved only as ‘respondents’.Involvement in research can be at many different levels. A more in-depth knowledge of research, the conceptual/theoretical backgrounds of the research undertaken, methodologies used etc. only comes from having opportunities for honing our skills (through studies, training and, equally, through experience of doing the work). I am not sure why a limit on that is set at three years unless, again, involvement in research is seen only as a very limited exercise.
Responding to research (as ‘participants’) or sitting on steering groups or doing some interviews may all be important aspects of involvement, but these do limit the nature and scope of user/survivor research. And I am not convinced any more that the language of ‘involvement’ will help us address this issue. I have been keeping track of the progress of a different kind of tokenism at work in the last couple of years, which uses the language of ‘co-production’ and ‘involvement’. But, on closer analysis, our roles continue to be limited to being participants or advisors (often with little decision making powers) and, in some cases, to ‘data collectors’. To quote Frederick Douglas’s experience of being an ex-slave speaker in abolitionist circles: “Give us the data, we will do the philosophy.”
My advice for this specific document would be to leave the definition of service user open but perhaps address the issue of recent experience of services following the ‘purpose’ in the 4PI document.