What if family and friend carers could be equal partners in mental health care?

Vanessa Pinfold

In December I always like to spend some time looking back at the year. I recently came across my notes from an event back in October at the Royal College of Nursing to celebrate the work of Alan Worthington and the Triangle of Care programme. This is an initiative to raise awareness of and facilitate the essential role that carers and families play supporting their loved ones when they are in contact with mental health services.  

The Triangle of Care has been shaped by the hard work, dedication and passion of many people including Alan. I had not met Alan before, and as often happens when people with personal experience of schizophrenia begin to tell their story, I felt emotional and teary. Alan identified a problem – family and friend carers being let down by a system that did not sufficiently include them – and set about trying to change that, first in Devon, then nationally. Fighting powerful systems and demanding culture change is exhausting work even in a team with others. Having allies along the way helps and many of them were also in the room. 

The Triangle of Care helps NHS Trusts to better involve and support family and friend carers as ‘partners’ in mental health care. It doesn’t shy away from the difficulties of doing this in practice, be that staff attitudes or concerns about sharing information. By building on best practice, six standards have been developed for Trusts to strive towards. Trusts commit to embodying these standards by joining a membership scheme and are assessed and awarded for stage one, two and three achievements. A list of the 38 Trusts involved in the programme can be found here (updated March 2018). Is yours one of them? I wonder why all 56 NHS Mental Health Trusts in England aren’t involved. 

Dual identity

The event I attended in October was very interesting with Trusts presenting the work they were doing and talking about the six standards. Each group of presenters included one or two carers who explained why they were involved in championing Triangle of Care locally. And it needs champions, as well as sustained leadership energy, to keep it moving forwards. Two of the Trust ‘Carer Leads’ responsible for the Triangle of Care were themselves mental health carers, adding to their motivation to answer Alan’s “What if” questions for acute mental health care.

My interest in Triangle of Care comes from my own research, on carers and confidentiality many years ago while working at Rethink and the writing I did for the Caring for Carers resource with the Meridian programme. Plus, McPin’s recent brief evaluation of the Triangle of Care for the Carers Trust. We were asked to look at the implementation of the programme earlier this year and make recommendations.

It is clear that this is a very important programme, as relevant today as it was in 2010 when it launched. Those signed up to the scheme are making progress, but, as a representative from one of these Trusts explained, we still need a substantial culture change so that carers are properly supported, included and valued as ‘partners in care’. Those “What if” questions still stand.

As one carer governor said, “We are still only at the beginning of the journey, but I am proud of the work we are doing”. And this work is not easy. Our evaluation and the speakers at the event acknowledged the many challenges. These include competing priorities for staff time, the need for cross-organisation managerial support, a lack of funding and finding enough carers to involve in co-delivery.

Local implementation

Well done everyone involved in the Triangle of Care. Keep going. The work championing mental health family and friend carers continues, and your support of each other is clear to see. I hope you are sharing all your learning, resources and tools. The benefit of a programme like Triangle of Care is that the “not invented here” syndrome should not apply – you can choose how to address each standard locally and will be assessed on progress towards each goal.  

McPin will continue to work championing carers’ issues through research. Do get in touch if you have ideas on what our carer research priorities should be. And finally, a huge thank you to Alan and his family. The room was full of passionate, inspiring people (mostly carers) who have been on the Triangle of Care journey with you. That is why it was so emotional for me as an observer; the power of collective support, motivation, energy, commitment and compassion founded in difficult personal experiences.

Read more about mental health research and the role of carers: “Who will support my son when I am gone?” What needs to change for carers