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Overcoming the barriers

13 April 2022

If you’re in charge of public involvement, co production, or service user participation, hopefully you’ll be keen to make sure you talk to a wide range of people, including those who are from diverse communities.

Involving people from seldom heard and marginalised groups has never been easy, and whether you want to consult, involve, engage or co-produce with service users, recognising the barriers standing in the way, and being committed to tackling them, will help you to both engage more people and make the experience more positive for them, increasing the possibility of their participation in the future.

In this blog you’ll find some of the barriers and recommendations for overcoming them, taken from our user-led research in 2021 resulting in the report Tickboxes and Tokenism. At the end of this blog you’ll be able to download infographics and text only documents with the barriers and recommendations to use as a quick reference.

Barriers to involvement
Over half of our survey respondents said that they have had difficulty getting their access and support needs met. It’s important for organisations to be aware of the barriers experienced by the disabled community so that they can create fair, safe and supportive environments in which involvement, co-production and participation can take place.
A high number of people said they needed reasonable notice of events and opportunities, papers being provided in advance, an accessible venue, the event to be held remotely or remote attendance an option, transport expenses paid, and payments made for participation.
The timing of meetings was also important. Early morning meetings are inaccessible for some; daytime meetings can be inaccessible for those who work.
Our respondents commonly highlighted the following support needs which often go overlooked:

Providing accessible information
Captions/subtitles in presentations, easy to read colour in presentations, appropriate text size in documents using microphones, braille and audio assistance.

Facilitating physical attendance
Accessible venues, transport arrangements, realistic allowance of time spent including overnight stays and recovery time, rest and bathroom breaks and assistance with those, dietary requirements, negative impacts of sensory environment.

Understanding of other support needs
Recognition of neuro-diversity and hidden disabilities, time to prepare, time to express experiences without pressure, recognition of needs changing over time, understanding complex needs and multiple types of disability, awareness of disabilities that are not commonly recognised such as the inability to sit, psychological support (sharing stories and hearing those of others has an impact), non-judgement when hearing strong and informed views, recognition that people are further ‘disabled’ by social, economic, communication systems, consideration for carers.

Reimbursement
Prompt payment of costs incurred, cost provision for carers and assistance, fair payment in exchange for expertise.

Many people report that complex and less obvious needs remain ‘unseen’ by some organisers, making involvement feel stressful and sometimes impossible. There were also reports of organisers having little awareness of how much planning, time, and energy it takes for people to attend involvement activities. Many people have experienced having to wait for expenses to be paid. The true costs of participation are also frequently underestimated. Organisers need to be aware that this causes financial hardship and can leave people unacceptably out of pocket.

One common response to what participants needed was hearing from the organisers the purpose of the work and how they will use the feedback. Many people said they needed to know that their involvement would make a difference. They want organisers to feed back to them the changes implemented as a result of the work.

Recommendations

When asked in the survey what might help people to take part in involvement activities many clear recommendations were made, including:

Before involvement

  • Better advertisement of opportunities
  • Realistic assessment of and payment of costs, expenses to be paid in advance or at least on time
  • Flexibility by offering different formats, physical, online, phone, written, personal one to one interviews etc establishing what works for individuals
  • Flexibility of meeting times
  • Time for advanced planning
  • Clarity about activities
  • Clear and concise instructions

During involvement

  • Supporting and encouraging diversity
  • Taking seriously the information shared so it doesn’t have to keep being repeated
  • Make opportunities varied and interactive for participants
  • Increased awareness of individual needs on the part of organisers
  • Trust (knowing that the organisation is genuine and cares)
  • Making time for personal stories in different formats (poetry, art, storytelling)
  • Meaningful experiences, not tokenistic
  • Acknowledging expertise by experience
  • Open and welcoming entryways
  • Don’t patronise or infantilize
  • Recognising and supporting inconsistent levels of ability.

After involvement

  • Following up involvement with evidence that it has been taken seriously and implemented
  • Feedback used for safeguarding rather than treated as ‘complaints’
  • Relationship building between organisation and expert by experience

Useful resources
Download our infographic with these barriers as a handy reminder
Download a text only version of the barriers listed in the infographic as a quick reference – Word doc
Download our infographic with recommendations to make your involvement activities inclusive
Download a text only version of the recommendations as a quick reference – Word doc

For more information:

To read the full report, visit: Tickboxes and Tokenism? Service User Involvement Report 2022 – Shaping Our Lives

You may also find these resources useful:
Beyond the Usual Suspects Electronic Guide 2 Making Activities Accessible – Shaping Our Lives
Beyond the Usual Suspects Guide – Shaping Our Lives
Improving Understanding of Service User Involvement and Identity – A Guide for Service Providers and Practitioners

Shaping Our Lives has over twenty years of expertise in inclusive involvement. If you need further advice or guidance, don’t hesitate to get in touch: hello@shapingourlives.org.uk