Listening to carers is not enough, they need our support too

As social care providers, if we want to support individuals with learning disabilities to have the best life possible, we have to make sure we are getting it right for the whole family. If we support carers – as well as listen to them – we are more likely to develop a successful support package that works for everyone.In Carers Week, it’s good to acknowledge that families and carers are the real experts when it comes to the supporting people with learning disabilities; and it’s important that we build in mechanisms which ensure their voice is heard. An ‘open door’ policy and promises to listen are all very well but to be truly effective there must be a systematic way of capturing the knowledge and expertise of carers to ensure this feeds into the planning process.

We are currently piloting Individual Service Funds throughout Certitude and have found person-centred practices such as Planning Live, which brings together all the important people in an individual’s life for a brainstorming planning session, to be an excellent way of doing this.

There are other person-centred practices that could be applied to carers. One Page Profiles are a well-recognised tool for establishing the needs and wants of an individual with learning disabilities but we plan to roll this tool out for families and carers too. Understanding how carers would like to be treated, what they are looking for from the support we provide and how we can all work together as a team could really make a difference.

But we have to do more for carers than just listen, they also need our support. Experience suggests that while carers do appreciate longer periods of time off, for example through respite holidays for people with learning disabilities, it is often the opportunity to get together with other carers that is the most appreciated kind of break.

Certitude’s My Breaks service shows that specific activities for carers, such as regular monthly meetings and practical and therapeutic activities including hikes and barbeques are much appreciated. The chance to meet up with people experiencing similar issues and to share problems and stories offers a simple, but effective, form of support. Family Forums also present an essential outlet for carers to express their concerns and are a useful way for providers like us to listen and learn. They are also an opportunity to show carers that their views are important, respected and heard.

Last year, we used the Working Together for Change process to learn from families of young children with disabilities – understanding what families experience before they start using adult services can only help us provide better support based on what people actually want and need.

The best support happens when an individual is surrounded by a team of supporters; as service providers we are part of that team, working in partnership alongside family, friends and carers.

Aisling Duffy, Chief Executive

Article published in Learning Disability Today


Do people with ‘lived experience’ give better support than professionals?

Aisling Duffy, Chief Executive

As it’s Carers Week I thought it was a good opportunity to highlight the growing role for carers who have lived experience. This idea – that people who have been through an experience are in a unique position to advise and support others going through the same thing – is central to a co-produced service Certitude runs in Lambeth called Solidarity in a Crisis.This out-of-hours, phone and outreach service for people experiencing a mental health crisis is lead by peer mentors with direct knowledge of mental health issues. Research by Ellis and Lewes (1997) found that 50% of crises happen outside of normal community mental health team opening hours so this service, which operates over the weekend, offers support and advice at a critical time.

Just over a year ago, when Certitude established the service, we set out to offer a holistic approach that was active but non-judgemental with peer mentors who could listen and advise with real empathy.

Peer mentoring presents unique challenges; we had to be careful to recruit people who could cope with the mental stresses of the role as well as the pressures of regular employment. And it was important that we found people who were strong enough to care for others without their compassion having a negative impact on their own recovery. Thorough training was crucial and, as well as a mental health first aid course, we are particularly grateful to Dr Tamara Russell who delivered a two-day training session entitled Maintaining Mindfulness in a Crisis, which has been invaluable to our peer mentors.

People call Solidarity in a Crisis for a myriad of reasons, but what many have in common is the feeling of impending doom as the weekend approaches. They might be feeling suicidal, isolated and lonely; many have lost their friends or family in a bereavement or as a result of the stigma surrounding their mental health diagnosis. What most callers have in common is that they just want to be listened to or to have someone to talk to, or need someone to guide them to a safe place where they can approach their crisis in a different way.

The response to Solidarity in a Crisis from individuals being supported, as well as mental health professionals and other carers, has been extremely positive. Time and time again we hear that people feel “listened to” for the first time in their lives because the person they are talking to has first-hand experience of their kind of problems.

I am a whole-hearted supporter of carers whatever their background; professionals, volunteers, families. However, the success of our carers at Solidarity in a Crisis seems to suggest that sometimes there is no substitute for experience.

Aisling Duffy, Chief Executive

The facts in this blog were provided by Karen Hooper and Emilio Reyes from their evaluation on Solidarity in a Crisis which can be read here.

Article also featured in  Mental Health Today