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Lived experience

People with lived experience (often referred to as service users) offer developers and commissioners unique insights into what works and what does not.

Ensuring that they are part of the partnership approach throughout the full cycle, from commissioning, to delivery, to monitoring and evaluation, will help to highlight areas for improvement and develop effective solutions.

Broadly, to have the greatest impact, you should be aiming for the following:

  • Professionals and people with lived experience working together in partnerships towards shared goals
  • Involving people in all aspects of the planning, development, delivery and evaluation
  • Increasing equality and power sharing (rather than just basic involvement and participation)
  • Viewing those who use services as assets to be valued, avoiding exclusion by proactively building people’s capacity to be involved (e.g. by explaining things)
  • Reimbursing expenses and recognising that if someone makes a contribution they should get something back
  • Providing clarity from the start about what can and cannot be changed
Example: Leeds YOT Commissioning Team
In 2017, Leeds YOT led an appropriate adult co-commissioning project on behalf of the five local authorities in the West Yorkshire Police force area. As part of the commissioning process, a group of young people with lived experience: 

The young people were part of a pre-existing group that supports commissioning in Leeds, as part of the city's child friendly Leeds intiative

on Friday January 05 by chrisbath
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The ‘ladder of participation’ is a well-known conceptual framework for involving people with lived experience. Information and resources are available online

Other relevant resources include:

Revolving Doors

Clinks

NAAN 

Professional development videos and presentations (requires membership and to be logged in to NAAN website)

  • Lived experience: Brain injury (Dominic Hurley)
  • Lived experience: A young person's perspective
  • Lived experience: Advice on supporting people with autism (Chris Hilliard)
  • Are we listening? Vulnerable adults' perspectives on appropriate adults (Tricia Jessiman, Bristol University)
  • Why service user involvement? (Paula Harriott)
on Friday January 05 by chrisbath
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Summary

Professionals (providers, commissioners and police) were interviewed. Their responses tended to focus on the following elements of the AA role:

  • Response time and availability
  • Ensuring due process
  • Protecting welfare
  • Emotional support

Two focus groups with then held with adults with lived experience of being a police suspect. One group had experience in the context of having a learning disability, and the other in the context of mental health. Observations included:

  • Many had not been given an AA despite their needs, or had only had one on occasions when the custody sergeant has ‘sympathetic attitude’ towards vulnerability.
  • The AA is a necessary safeguard against the police “putting words in your mouth.”
  • Strong and differing personal views about who should act as their AA, specifically on whether family/professionals should be involved
  • Concerns about confidentiality and information sharing with other agencies such as housing
  • Many felt that support should focus on ensuring understanding of their situation (e.g. rights, detention times, questions being asked) enabling them to manage themselves, while others felt they would still need support with effective communication
  • Respondents’ experience of custody was overwhelmingly negative, and they recalled feeling intimidated, frightened, dehumanised, bullied and isolated. They wanted someone “on my side” and to protect against humiliation. The second most commonly cited support need was for emotional support.
  • Some people wanted engagement with the AA service after custody, either for additional support or for feedback
  • Attributes they wanted in an AA (see lists below) 

Group 1 (mental health)

  • Calm
  • Calming
  • Caring
  • Psychiatric knowledge
  • Gender preference
  • Respectful of race, culture and sexual identity
  • Protective
  • Kind
  • Confident
  • Knows the correct procedures
  • A people person

Group 2 (learning disability)

  • A good listener
  • Good communicator
  • Trained in all aspects of learning disability
  • Trustworthy
  • Honest
  • Caring
  • Gender preference
  • Confidential

Reference

Jessiman T, Cameron A. The role of the appropriate adult in supporting vulnerable adults in custody: Comparing the perspectives of service users and service providers. Br J Learn Disabil. 2017;00:1–7. https://doi.org/10.1111/bld.12201

Link

http://onlinelibrary.wiley.com/doi/10.1111/bld.12201/full

on Friday January 05 by chrisbath
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Summary

A semi-structured discussion was held with members of the Working for Justice group. Members of the group have learning disabilities, one member has autism and all have been police suspects.

Understanding the AA role

While there was a general understanding that the role of the AA was to ‘help’, this was essentially limited to support with communication in interviews. The AAs purpose was viewed as helping detained people to understand the questions being put to them by the police. Members of the group said:

  • ‘They are there to help me when the questions were difficult’
  • ‘To help stop misunderstandings’
  • ‘To help with communication’
  • ‘So you don’t incriminate [yourself]’.

Experience of support

Four of the six had not been provided with the support of an AA at all despite their needs. Of the two that had, one group member said: ‘They helped to explain the questions.’

Who should be an AA?

Relatives and friends

Service users were asked about the advantages and disadvantages of having a relative or friend as their AA. Moral support was by far the strongest reason for having someone they knew. One group member said: ‘My mam was there; she made sure they asked the right questions.’

A number of downsides were expressed, the most significant being that they would not know what the role involved or ‘how to behave’. However, the issue of potentially complex relationships between people with support needs and their family members was also of importance to the group. There was agreement that there were risks inherent in having previously fallen out with a family member who might then be called or agree to act as your AA. Group members said:

  • ‘What if you don’t have a good relationship with them?’
  • ‘Some people don’t want them to know what’s going on.’
  • ‘What if there are torn loyalties?’
  • ‘They might be judgmental. They are not independent.’
  • ‘It shouldn’t be a family member but it should be someone who knows you.’

Reference

NAAN (2015) There to Help: Ensuring provision of appropriate adults for mentally vulnerable adults detained or interviewed by policeThere to Help: Ensuring provision of appropriate adults for mentally vulnerable adults detained or interviewed by police (Paper G)

 

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