Characteristics and needs of long stay patients in high and medium
secure care: implications for service ( C.A.N.L.I.S )

Patient and Public Involvement (PPI) has been a key feature of this study, demonstrated in a number of ways, as set out below.

How it works

The Service User Reference Group was formed at the beginning of the study and has met on the same day as the Project Management Group, an arrangement that has both a practical and a symbolic value. In practical terms, it means that a member of the Reference Group can simply stay on and attend the Project Management Group which follows their own meeting, while members of the research team arrive early to contribute to the Reference Group. Presentations are adjusted for each different audience, but the planning and preparation are streamlined. In symbolic terms, the Reference Group is seen to have an equal value, and indeed starts the day, rather than being tagged on at the end. The Principal Investigator always offers to attend, recognising the value of real partnership with the Reference Group.

The Group is made up of a range of people with relevant lived experience, including: a current inpatient who joins us via skype from the high secure hospital; a carer of someone who has recently been discharged from high security; an ex-medium secure inpatient; a current resident from a locked rehabilitation unit and an ex-prisoner.

Discussions in the Reference Group have generated some important themes. Over the lifetime of the group, researchers have become increasingly adept at distilling the complex issues that they face into clear discussion starters that will engage with the lived experience of participants. As the researchers have learnt, so members of the Reference Group have gained too – through training on statistical analysis, opportunities to facilitate focus group sessions and connection with an international network. 

Successes to date

The original study outline did not ask about views of carers, and this was challenged by the Reference Group. As a result, the Principal Investigator managed to add a focus on carers to augment the orginal work.

We had hoped to actively involve members of the Reference Group in interviews with patients. Whilst other studies have favoured engaging experts by experience as co-researchers in this way, we heard important feedback from people in secure settings that, whilst they might trust professionals with the confidential aspects of their circumstances, entrusting strangers over whom there were no obvious sanctions was another thing entirely. The study design was adjusted to accommodate these findings, whilst the ambition remained to involve members of the Reference Group in some way.

A good opportunity arose in relation to the work with carers. A member of the Reference Group has worked with a researcher to design interview questions and then ask them at focus group meetings with carers. The output has been a rich vein of observations, poignant stories and reflections.

Reference Group meetings that include a video link have been a big learning experience for some members, but has demonstrated that it no fence is too high to block participation, if the will and determination has been there. 

Outstanding Challenges.

Support staff are sometimes required to escort people to the meetings and this both creates additional barriers to participation and raises questions about their role in the Reference Group. People who need the help of others to attend, or people whose lives are unsettled find difficulty in engaging with a group which meets occasionally rather than frequently.

Soon after the project began, we experimented with the idea of appointing a service user chair for the Reference Group and this ran well for about a year, but for a variety of reasons, the chairing role reverted to a staff position. Such new ventures can be delicate, and engage with a number of sensitive issues that emerge in the uncertain ground that lies between full time and sessional roles, volunteering and paid work, competence and communication. We continue to explore practical arrangements for recruiting, engaging and supporting service users into such roles. 

Despite our best efforts, participation payments have sometimes been delayed.

Sometimes the date of the meeting falls a long time away from the moment when hot topics emerge from the research process.

Most significantly, finding individuals who are willing to engage in research and retaining their interest may be harder in this group than in relation to other topics.

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