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Listening to the lived experiences of carers is a privilege

Posted by: , Posted on: - Categories: Care and support, Carers strategy, Consultations and surveys, Guest author

Yvette Wetton works for Healthwatch Essex as Carer and Engagement Coordinator. It’s her job to reach out to unpaid carers to ask them about their experiences of caring for friends and loved ones. As our call for evidence continues into the summer she offers a regional perspective on this national exercise.

Yvette Wetton: "Carers are so often the ‘glue between services’ – the one part of the system holding everything together."
Yvette Wetton: "Carers are so often the ‘glue between services’ – the one part of the system holding everything together."

So I’m at a carers group run by a local carers charity in northeast Essex. I’m chatting with a man who has been caring for his wife for the past 40 years.  I ask him: “What is the one thing that would make your life better as a carer?”

He looks me straight in the eye and says: “A cure for schizophrenia.”

When pushed he adds: “services for my wife that work together to provide what she needs for her continued health and wellbeing”

And therein lies the issue - he isn’t the only carer who has said this to me. Carers don’t really want services for themselves – they want to make the lives of the people they care for better.

Carers are so often the ‘glue between services’ – the one part of the system holding everything together, where personalised approaches and information sharing ideally converge on a single point of contact.  It's when services don’t meet people’s needs that additional pressure is placed upon them.


Why is Healthwatch Essex so keen to have an input into the Department of Health’s call for evidence?  We have the luxury of listening. We believe the best services are those that are developed and delivered by listening to people and using their lived experiences to shape responses. This no less true for carers.

There is no one type of person who is a carer - they’re just someone who sees that another person needs a bit of help and steps in. Sometimes it becomes more complicated than perhaps either party had anticipated. Often people don’t set out to become carers but slowly the tasks grow and they become immersed in the role alongside all the other responsibilities of their day-to-day lives.

Our research exploring the lived experience of carers in south Essex helped us to understand, first-hand what it feels like knowing that tomorrow will be filled with many of the same tasks and challenges as today.

Carers are a diverse bunch – and there’s no one way to capture their lived experiences.  In order to gather their stories, we have spoken to Essex based carers on a one-to-one basis, as part of small focus groups and in larger meetings and community events.

We’ve invited individuals to write about their experiences for a series of blogs which we have published on our website. We’ve attended meetings of established carer support groups, condition specific voluntary and community organisations meetings, employee carer groups linked to statutory sector organisations, as well as running our own events.

We asked carers about their experiences of carer assessments as a route to access support and published our findings in a report ‘Carer's assessments in Essex: what do carers say?’ and shared this with our local authority so they can be used to improve services.

What comes through strongly is that carers want more joined up, personalised services for the people they care for. They want to be recognised and respected as an important ‘cog’ in the machinery of a person’s care.

When someone begins their caring role, the system of care they need to access can seem confusing.  The plethora of information and services available to support carers is only matched by their diversity and individual caring situations.

What carers want most of all is the reassurance that when things get too much they can rely on the same care services used in their caring role to step up and support them right back.

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  1. Comment by Shirley Smith posted on

    Getting the right care package for my adult L.D. son including the ideal accommodation for his needs is practically impossible in our part of West Dorset. My son is 57 and I am a 79 year old carer. Although my son lives in a first floor flat with some care provided by a local agency I am still very much 'hands on' in his care and for his emotional stability. .He really needs a more supported type of accommodation. I worry about his future and how his needs will be met.

  2. Comment by Marie-Andree Francis posted on

    It should be a mandatory requirement for all Healthwatch throughout the United Kingdom to have a 'Carer and Engagement person'. Not all Healthwatch have this valuable resource that carers can access. Some Healthwatch staff are too busy on their computers in the office instead of going out to engage with the community.

    My local one in Merton doesn't have such a resource. If they do, I've never seen that person attend any of the Carer Group Meetings that we hold regularly.

    • Replies to Marie-Andree Francis>

      Comment by Yvette Wetton posted on

      Hi Marie-Andree - Although I'm not in a position to make comment on Healthwatch Merton's resources I can say that we at Healthwatch Essex have been very fortunate to have the backing of Essex County Council to support our work with carers which has made all the difference.