Hear Our Voice
A Co-produced Lived Experience Documentary produced by people living with Dementia, facilitated and supported by Dementia NI, Southern and South Eastern Health and Social Care Trust staff.
Dementia is one of the most prominent challenges our society faces today.
The Northern Ireland Audit of Dementia Care (2015) notes that “Dementia is an increasingly common diagnosis and the prevalence is growing each year as the population ages.” The number of people with Dementia in Northern Ireland is expected to triple by 2051, to 60,000. 1 in every 2 people will be affected by Dementia either by being diagnosed or caring for someone who is.
Context:
As the numbers of people with Dementia continues to rise an adequately skilled and trained workforce is required to ensure that complex dynamic care and support are delivered.
In order to meet the needs of this changing demographic, Trusts need to think of new and innovative ways of developing a skilled and competent workforce. One way to do this is by improving training opportunities across the whole spectrum of HSC staff.
The Dept of Health co-production guide defines coproduction as a highly person centred activity, that connects and empowers and is based on valuing the contribution of those involved. It is a genuine partnership that works to find shared solutions.
Project Aim: To develop and co design a documentary of lived experience.
Hear Our Voice amplifies the poignant and powerful voices of people living with Dementia, including those with young onset Dementia. It provides viewers with a glimpse into the creators’ lived experience and their fervent desire to transform the narrative around Dementia.
Hear Our Voice is more than a documentary, it is a call to action in which Dementia NI members share their challenges and invite viewers to follow their “Top 10 Tips” for supporting people living with Dementia.
This empathy-based documentary aims to challenge stereotypes, reduce stigma and support the viewer to provide compassionate, person-centred care to people living with Dementia.
Project Objectives:
- To establish a working group of people living with Dementia and HSC staff to co-design and produce an educational resource for HSC staff.
- To utilise co-production approaches to harness the real life experiences of people with Dementia in order to educate HSC staff.
- To provide a safe and supportive environment conducive to good quality, authentic co-production.
- To access appropriate funding to enable the production of a high quality Dementia training resource.
- To seek support from people with influence to ensure effective spread, within the Trust, the SPPG & PHA.
- To ensure the values of co-production are evident at each stage in the process of development, creation and editing.
- To gather feedback from members and HSC staff before launch to ensure that the video is relevant and useful.
- To ensure the video is accessible and available for staff regionally across the whole spectrum of the HSC workforce.
- To plan and develop a regional engagement strategy to promote and maximise potential impact of the resource.
Dementia NI members are always seeking opportunities to engage with Health and Social Care Staff in order to inform Dementia care. In 2022 an initial meeting took place between Hazel Haworth, Dementia NI empowerment lead and Mairead McGahan, Dementia Service Improvement lead SHSCT, to discuss a potential coproduction project. It was agreed that the most effective way to reach a high volume of staff was via an educational video and the idea of a coproduced Dementia educational resource was born.
After taking up the new post of Dementia Service Improvement lead SHSCT Naoimh McGlone alongside Hazel Haworth Dementia NI reached out to Dementia Service Improvement colleagues in SEHSCT. Recognising the challenges that staff were facing and that there was a genuine hunger amongst Health Care Staff to access more high quality Dementia training in 2022 we began the journey of co-producing an empathy based documentary about the lived experience of Dementia.
We quickly established a working group with a defined shared vision: to raise the profile of Dementia, challenge stereotypes and give staff clear, transferable advice that will improve the experience of people living with Dementia.
At the initial planning stage, the idea was for a series of interviews with Dementia NI members to be recorded and shared with Hospital staff. This idea quickly became much bigger than initially planned, in no small part due to the drive and determination of the members of Dementia NI. It was decided that this video could be shared more widely as it would also help to dispel the myths that surround dementia, ensuring that the general public can respond to the realities of the disease. Dementia NI members vision was to share their challenges of what it is like to live with dementia as well as practical ways they can best be supported in Health and Social Care environments. During collaboration it was decided to create 10 top tips which could be displayed on a poster which would supplement the video.
The SMART framework was used to assist with setting clear goals and objectives for the project. (Specific, measurable, achievable, relevant and time bound)
The initial aim was to launch the video during Dementia Action week 2023.
Our Project team consisted of 8 people living with Dementia, 1 Dementia NI Empowerment Lead and 3 Service Improvement Leads from SHSCT & SEHSCT.
Creators & Dementia NI Members
- Peter Alexander
- David McElhinney
- Alison Bachelor
- Christopher Higgins
- Gerard Doran
- Marion Gibson
- Tom Heatley
- Martin Murtagh
- Hazel Haworth Dementia NI Empowerment Lead
- Naoimh McGlone Service Improvement Lead for Dementia SHSCT
- Tracy Kane Service Improvement Lead for Dementia SEHSCT
- Shaun Byrne Designstics
Actions / Time Frame 2022-2024:
- Dementia NI reached out to all their members to invite them to participate in the project to ensure inclusion of various dementia subtypes and different stages of disease progression.
- This group of 8 members of Dementia NI provided representation across the region.
- Working group established. Dementia NI members supported by empowerment lead from Dementia NI and Service Improvement leads to create a safe and supportive environment.
- Venue agreed for meetings (Armagh) – supported by Armagh Robinson Library.
- Dates for meetings goal setting, roles responsibilities hopes and expectations discussed and agreed.
- I would like to speak cards used to facilitate everyone having a voice
- Open discussion about lived experience facilitated
- Funding for video kindly secured by Southern Trust
- Meetings with designstics digital company commissioned to create video
- Storyboarding content creation
- Filming schedule agreed ( filming took place April – June 2023)
- 10 top tips decided and developed by the group poster design commenced
- Support from SPPG, project included in regional Dementia Service Improvement leads work plan
- Advance screening held at Queens university July 2023 feedback received support from SPPG / PHA / QUB/UUJ
- Meetings with SPPG / PHA / Dementia NI lead to discuss how they could best support the project and release the documentary regionally across HSCNI.
- Edits made to the video based on feedback.
- Regular keeping in touch update meetings with working group
- Communication strategy devised with Dementia NI/ SHSCT/SEHSCT/PHA/SPPG communication teams.
- Official launch planned for Stormont Sept 2024.
- Trailer designed and produced.
- Friends and Family launch August 2024 UUJ.
- Support from Trust PPI Leads.
- Documentary launched at Stormont 11th September 2024 endorsed by Minister for Health.
- Following the launch, and with the support of the SPPG and PHA, documentary released regionally across HSCNI.
At all stages of the project planning, development, creation and editing discussion and decision making was led by the members of Dementia NI facilitated by Dementia NI Empowerment lead and Dementia service Improvement leads ensuring the values of authentic co-production.
In order to deliver on our commitment to the members of Dementia NI to ensure that “Hear Our Voice” reaches its maximum potential and is disseminated across the entire Health and Social Care workforce the Service Improvement leads for Dementia used their connections to key players in the PHA, SPPG and other Health and Social Care partner organisations to maximise exposure and impact of the documentary.
Post launch Engagement.
- Queens Dementia Conference: Caring for Today Planning for Tomorrow. 2024
- Chief Nursing Officer Conference 2024
- All Ireland Dementia Forum
- Presentation to Dementia Trust board
- Presentation to care homes PHA
- British Deaf Association – Health and Wellbeing Fest
- Presentations Trust PPI committees / events
- Radio and media coverage.
- Hear Our Voice has already been added to undergrad nursing programmes in QUB & UU. It is also being used on post grad training provided through Stirling University, Bradford University and QUB.
Next steps:
- Translate into sign language maximise accessibility – currently in progress.
- Top 10 Tips poster to be signed-off and distributed across the region.
- QUB & UU have given a commitment to support the development of Hear Our Voice into a learning resource and to complete a post-project evaluation (6-12months).
- Future video resources to be created.
- Resource to be added to LMS.
Hear Our Voice was only launched on the 11th September 2024.
We have just begun our journey.
“Hear Our Voice is a transformative piece of work. It sheds light on the realities of living with dementia with such honesty and sensitivity. It’s not just a documentary; it’s a call to action.”
Viewer Testimonial
Youtube Views: Over 1000 *(important to note that Hear Our Voice is often viewed in group training or awareness sessions, therefore the number of people who have watched is significantly higher)
Data:
We have received feedback from 154 viewers to date through the formal feedback form.
100% of respondents reported that:
- They found Hear Our Voice beneficial
- They thought that the training enhanced their knowledge of Dementia or challenged their perception of Dementia
- They would like to see more videos like this in the future
- They learning something that they could implement into their day to day practice.
We have also received multiple verbal and written comments including:
- “Will always remember this training, this co-production is streaks ahead of anything I have ever viewed.”
- “Deserves an award and global recognition. Amazing what can be achieved when people get together and share experiences.”
- “Perfection, just right duration increased my awareness and understanding of Dementia.”
- “Great tips and advice provided already implemented after watching this.”
- “This video wouldn’t be out of place on the BBC. Everyone needs to watch it.”
Peter Alexander, Dementia NI member said that the idea behind ‘Hear Our Voice’ is a desire to transform the narrative around the condition.
“Hear Our Voice is more than a documentary; it is a call to action in which share challenges that we face and invite viewers to follow our “Top 10 Tips” for supporting people living with Dementia.
“By sharing our real experiences, we hope to foster understanding, challenge stereotypes, reduce stigma and support the viewer to provide compassionate, person-centred care to people living with Dementia.”
Allison Batchelor as a member of Dementia NI I am extremely proud to have been involved in the coproduction project Hear Our Voice.
Our vision was to create a documentary for Health and Social Care staff sharing our experiences of living with Dementia. The video is really powerful and has allowed members of Dementia NI
To have a voice. The simple tips shared can be followed by staff and will make a big difference for people like me living with Dementia.
Health Minister Mike Nesbit said that this initiative reflects the health service commitment and dedication to enhancing understanding and awareness of Dementia.
“Self-advocacy is a powerful tool and who better to educate and advise on how to support people living with Dementia than those living with the condition.
“I congratulate the Trusts and Dementia NI for developing this powerful documentary which I have no doubt will challenge existing stereotypes and will be an informative way to educate people in how best to support individuals living with dementia.”
We sought feedback from the members of Dementia NI on their experience of working on this co-production project.
100% of respondents reported that:
- The finished product met their expectations based on the working group discussions.
- The Service Improvement leads were open, honest and approachable.
- They felt respected whilst working on Hear Our Voice.
- Their opinion was valued and they had an equal say in decisions about the overall direction of the film.
Lessons learnt:
- Authentic co-production requires time, time and more time.
- Underestimation of time-frames our initial launch date was unrealistic.
- There was a significant amount of good-will involved in the project. Limited funding / resources. Valuable support was provided by volunteers.
- The value of the empowerment facilitators/leads in Dementia NI to support the project.
- Having a shared vision created a clear goal.
- Support from Influencing partners ensured project success.
- Listening and developing psychologically safe spaces lead to the best opportunities for meaningful engagement for all parties.
- People from all walks of life can bring invaluable experience to support decision making in health and social care – by creating genuine trusting reciprocal relationships, everyone can benefit.
- Having the support of Trust senior managers allowed Dementia Service Improvement Leads to fully invest the time and commitment needed to deliver an authentic co-production project.
The SHSCT & SEHSCT would like to take this opportunity to acknowledge a special thank you to the members of Dementia NI for their generosity and vulnerability in sharing their innermost world demonstrating immense courage and true commitment to improving the quality of care provided to people living with Dementia. We are so grateful for their time, effort and dedication to creating ‘Hear Our Voice.’
