1. What does your organisation do and who do you work with? What is your role?
The Huntington’s Disease Association support people affected by Huntington’s disease. Our vision: Together we will build a better life for anyone affected by Huntington’s disease
Our mission: To enable everyone affected by Huntington’s disease to live life to their full potential by:
- Improving care and support
- Educating families and the professionals who work with them
- Championing the needs of the Huntington’s community by working together
- Influencing decision-makers to tackle discrimination and secure equity of access to services
My name is Vicki Rutland I am the Head of Communications and Marketing.
2. Why is co-creation a priority in your work?
Since the formation of the Huntington’s Disease Association in 1971 by HD community volunteers, to the creation of our regional specialist support in 1995, we have always been community-led.
I would say with some projects ( e.g Surrey ) we worked on co production, but as this is not applicable across the whole of the organisation we are hovering between co design and co production on the ladder.
3. What is in place to make your services more accessible?
We work with our youth group, HD Voice and ambassadors to help us become more accessible. We offer many different types of support from over the phone, family visits and online support sessions. We hold monthly support sessions and online webinars with information for families. The online webinars are recorded and uploaded to our YouTube channel so that can be accessed at any time. Our website is accessible and includes a widget/toolbar for accessibility, enabling visitors to the website to translate in to another language or change font size, type and colour of images on the website. We use Alt text to describe imagery.
4. How do you currently involve users to create and develop services?
As an Association, we currently have a national membership of 5,133 individuals from the HD community.
This represents approximately 70% of all those currently accessing our support services across England and Wales. As such, the majority of those accessing our services have a voice in shaping the charity’s leadership and direction.
Ongoing co-design and co-production remains central to our work and is driven by the HD community and their needs and aspirations. We recognise that our community’s expertise, knowledge and skills are vital to developing services, reaching more people and improving people’s lives.
One of our strategic priorities for the next five years plan is about co creation , to make sure the voices of people affected by Huntington’s are at the heart of everything we do.
We have various ways of engaging with our community:
- HD Voice is an initiative by the Huntington’s Disease Association that gives families a voice in Huntington’s disease research and the internal work of the Huntington’s Disease Association.
- HD Ambassadors – a group of people who are willing to share their stories and help us create messaging for campaigns
We work with people from the HD community to coordinate some marketing/ promotional materials, for example, we recently created an animation about what is Huntington’s disease. Someone from the community was involved in writing and editing the script as well as providing the voice-over. People with Huntington’s have been at the forefront of our Awareness Month campaigns over the last three years, their stories, shared in their own voice have been central points of the campaigns – through film, blogs and news articles.
- Our new five-year strategy included consultation, initially through surveys and focus groups and through the development of the strategy with the strategy being shared for comment with the community before the final version was published.
- The Surrey service design project used surveys, focus groups and co design workshops.
5. What changes have been made as a result of co-production?
Co-production has helped ensure the marketing message is correct – when we have implemented it. One of our most successful projects was to help shape a service delivery model for Huntington’s disease patients in Surrey. The project aimed to build on existing services to develop a service model that is fit for purpose and provides equitable care for Huntington’s disease patients, family members and carers. The outcome was design of a successful service model for people with Huntington’s disease, and a proposal for the
development of and recruitment to a Huntington’s disease coordinator post.
6. What organisational benefits have you had from co-creation?
Giving people a voice in our organisation helps with communication, for example, the recent strategy had already been seen by a large part of the community before it was published. The recent animation was well received in the community with the person doing the voiceover a well known fundraiser for us, it makes it instantly more appealing.
The Surrey project led to a blueprint for others to follow in managing Huntingtons’ disease.
7. What top tips would you share with an organisation that wants to involve users in shaping their services?
Take the time to brief people, listen to their comments and take time to understand them. Sometimes a dismissive comment is easy to take at face value but further questioning can help you understand what that might really mean.
Make sure everyone understands their role, and what exactly is being asked and to understand where there may be limitations.
Remember when co creating people need to be involved all the way through, it is not just asking for people’s input, but an ongoing dialogue, with the opportunity to review along the way. For example, with the strategy document, people could see it at different stages before it was published. Keep people informed.
Keep in regular contact, HD Voice receive regular updates and members were invited to a recent parliament event giving them a chance to be active in campaigning.
8. Lessons learned around co-production –
Things that have gone well include being able to share information that can help you promote your services, your target audience has already bought in (through the consultation process). Your final product is also endorsed, giving it additional value – supported by the community.
With the service delivery in Surrey, things that went well included strong engagement with patients, family members, carers, clinicians and commissioners both locally and nationally. Patients and carers were at the heart of what was achieve and family members and carers validated the challenges identified by clinicians
Not so well – letting everyone have their say, one person can sometimes dominate a discussion so other ways may be better to communicate – encouraging emails or phone calls as other ways to feedback. With the Surrey project, the power of clinicians could be used more to encourage innovation at a grassroots level. Next time we would establish
a small focus group after the engagement workshops to help finalise deliverables/