Thought Pieces

Getting good quality feedback from “seldom heard” service users

Getting good quality feedback from “seldom heard” service users

Getting good quality feedback from “seldom heard” service users banner icon

There are many reasons why people may be deemed ‘seldom heard’. They could have practical issues with communication such as speaking a different language, difficulty hearing, no access to the internet or literacy issues, mental or intellectual impairment or illness. They may struggle to concentrate or face other challenges, for example for people who are homeless, asylum seekers, in prison or living in rural areas.

The task

Around two years ago a CCG on the edge of London decided that its services for people experiencing a mental health crisis were in need of improvement. Keen to ask people who had used these services for their views and experiences they commissioned Niche Health and Social Care Consulting to carry out a series of independent interviews with people who had been detained under the Mental Health Act (1973) (MHA) (also called “sectioned”) and admitted to hospital within the previous 12 months. A steering group was set up to oversee the project.

The local mental health Trust was very positive about the project. Their Inclusions and Engagement Team already encouraged and supported service users and carers to share their views. They had panels of service users and carers (experts by experience) who were keen to get involved in shaping mental health services.

It quickly became apparent, however, that, despite the Trust’s enthusiasm, resources and experience, accessing people who had been sectioned and admitted to hospital in the previous 12 months was going to be a challenge. None of the current experts by experience, for example, had had such a recent experience of the detention under the MHA and a different approach would be required.

Our approach

In addition to the steering group, a small “operational” working group was set up to oversee the project. It consisted of the Niche lead consultant, the Trust’s AMHP (approved mental health professional) development lead, the inclusion and diversity lead and the IG (information governance) lead. Interview questions were drafted on a collaborative basis and shared with the Trust’s Experts by Experience who were also asked to comment on the suggested approach.

Next, we decided that we wanted to talk both to people for whom this was their first experience of being detained under the Mental Health Act and others for whom this was a second or subsequent detention. We also discussed how we might identify whether people were currently well enough for someone from Niche to phone them as we did not wish to risk traumatising anyone who was not willing or ready to talk about what would have been a very difficult time in their life.

Records indicated that over 2,000 people had been detained under the mental health act during the 12-month period under review. Whilst Niche had been commissioned to talk to people about their experiences, there was a huge task to do in identifying and gaining consent from people before their details could be passed over to Niche. Trust staff had to check details for 638 individuals, review over 500 sets of electronic patient records, make over 300 phone calls to over 100 service users and nearest relatives and follow up people who consented with written materials. This extensive groundwork ultimately resulted in 36 people consenting to be interviewed by Niche.

The process was reviewed at regular intervals to ensure it was working. And at subsequent reviews it was agreed to include a small sample of nearest relatives in the process.

What did we learn about this process?

  • Everybody involved in setting up this important piece of work underestimated the time it would take to identify, approach and “consent” enough people with the right recent experience to participate in this review.
  • We would emphasise the important of having dedicated, persistent and sympathetic staff from the Trust involved in identifying individuals and ensuring they were in a position to contribute to the review if they wished.
  • This was too big a task for staff to do alongside their day job and so additional resource to provide Trust staff time was essential.
  • The Steering group was also key in ensuring that safeguarding processes were in place should the interviews throw up any concerns which required a safeguarding response (which some did).
  • It was important that the Niche interviewer was sufficiently experienced to enable them to cope sensitively with some very personal and distressing experiences which some people chose to disclose and was clear regarding safeguarding requirements.

A positive outcome

Ultimately, the people being interviewed valued being asked for their views and being given the opportunity to talk to someone independent about their experiences.

We gathered a great deal of very important information and heard stories which had never before been told. In particular the reflections of people sectioned and admitted to hospital during a pandemic were very powerful. The interviews enabled us to capture these experiences and detail them in an anonymised report.  This was shared with the service commissioners and providers, who plan to use them to improve the services involved as soon as possible.

Client feedback

“Niche maintained clear and open communication throughout. Their approach was inclusive and established clear expectations of all parties.”

“Planning and scoping the project was good: It considered potential barriers and risks, and defined distinct phases of activity with anticipated timelines.”

“There were occasions when challenging and divisive issues emerged. Potential Safeguarding concerns were reported sensitively in a timely and appropriate manner, mindful of confidentiality. This engendered confidence in a trusted and meaningful process. Really well done and good to work with you.”

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