The Health Team at MacIntyre, a national charity supporting people with learning disabilities and autism, share how its Health Team is breaking taboos, fostering co-production, and improving health outcomes.
At MacIntyre, we believe that being proactive, sensitive and understanding about the health needs of everyone who draws on our support is vital for each person to be able to lead their best life – a life that makes sense to them.
Health is often a difficult topic for people with learning disabilities and autistic people. Common health interventions often carry fears, sometimes related to past experiences, and being able to support people in understanding their body and how it works (both when it’s working well and when it isn’t) requires truly person-centred, tailored approaches.
An important emphasis for us is around breaking down barriers, especially around more sensitive issues like constipation or menopause, as well as empowering people to feel able to speak up if something doesn’t feel right in their body. A recent example of this is how Matthew has taken charge of his health recording using Bristol Stool Chart Flashcards.
How we work as a Health Team
We are currently a team of three core staff, supported by people with lived experience in roles including as co-trainers, and we have additional support from MacIntyre colleagues and external experts as well as actively connecting with other providers so that good practice and ways of overcoming challenges are shared and learnt from.
A huge part of our role is being active within local provisions, meeting and supporting both the people who draw on our support and frontline colleagues. We do this in many different ways, from supporting staff teams to keep accurate health records (We use the Anticipatory Care Calendar produced by the Innovation Agency), to using Books Beyond Words with a person who draws on support to begin conversations about everything from how to do breast or testicular checks to managing diabetes.
We run book clubs and various workshops, both online and in-person on a range of topics, for people who draw on support and staff.
Being both generalists and specialists
As a Health Team we need a broad range of knowledge and skills in numerous health conditions so we can support staff teams with any health concerns, advice or information about people supported by MacIntyre. We also work proactively throughout the year highlighting campaigns around topics like screening tests and cancer-awareness, plus other good practice health advice, like monitoring blood pressure and supporting healthy lifestyles to aid weight loss or improve fitness.
We have developed specialist knowledge including being leaders in supporting people with learning disabilities and dementia. We know people with learning disabilities are more at risk of developing dementia and more likely to experience a mirage of difficulties with diagnosis and post-diagnostic support. Our Dementia Pathway offers staff teams bespoke best practice support, and we are using 2025 to focus on environmental audits to ensure our services are better-equipped for people as they age.
We’ve also run our Dying to Talk Project around end of life planning and support, and our latest project is ‘Let’s Talk. Period.’ which aims to break down taboos about menstruation. Bethan, who’s worked with us on ‘Let’s Talk. Period.’ says:
“I like learning about periods and what is going to happen to me, I didn’t learn a lot in school.” Gemma has also worked with us on ‘Let’s Talk. Period’ and says: “I went through menopause when I was 17 because of my health. I like to share my experience and help staff to talk about it to people.”
Co-produced healthcare
It’s important to us that everything we do as a Health Team is guided and supported by a co-production approach. Until her recent retirement, Rosie Joustra was an employed member of our team and contributed a huge amount to our work both internally and externally, especially around dementia, and Rosie and Rachel Silver were key staff team members during our Dementia Project. Rosie’s message of hope to anyone diagnosed with dementia, as shared in her NHS England film, is: “It’s not what you can’t do, it’s what you can do.”
In our Oliver McGowan training we work with a team of eight Co-Trainers, and one of our Oliver McGowan trainers, Jess Hiles, is also part of the three-person team delivering our Loss and Bereavement training in conjunction with ARC England that was double award-winning at the Palliative and End of Life Care Awards in 2024.
We know from feedback that this involvement from people who draw on support is extremely memorable for learners, with a learner on a recent Loss and Bereavement training session saying: “Training with someone with lived experience, not about them, is much better.”
Overcoming challenges and supporting frontline teams
One of our main challenges as a Health Team is ensuring we know about the health and wellbeing status of everyone MacIntyre supports. We keep robust records as an organisation, but ensuring we are always accessible and approachable to frontline teams is vital to obtain the more nuanced information that can really help in providing early intervention support in situations involving someone’s mental health or when things are changing with a person that may be due to dementia.
We know that health concerns about a person supported are one of the most common worries frontline staff have, alongside challenges accessing healthcare services. We work in many different ways to overcome these difficulties, offering rapid in-person or virtual support for teams, debriefs, and supporting with challenging decisions where we are concerned about health inequalities. Our staff value these approaches, and knowing they aren’t alone in health decisions or accessing healthcare services provides invaluable support that means our work has a positive impact for everyone it touches.
