Blogs

What is on you 'silent disco' playlist for 2023? 

In this blog, Martina, one of the researchers on the Spinning Plates project, explains how music came up as something important in the lives of family carers and how we talked about music together with family carers in our Tea and Cake group and in other parts of the project. 

What is on your 'silent disco' playlist for 2023? 

Our There’s been a bit of a craze for people to share their playlists from Spotify for 2023. You can share the songs and artists you have listened to most throughout the year. When you share your playlist, you share a bit about what has been going on for you over the past year.

In this month’s Tea and Cake group, we talked about the power of music. We talked about how it can affect our mood. Music can calm us, it can pump us up and it can help us sit with how we are feeling in the moment. We imagined going to a silent disco and the music that would be between the headphones and in our heads. Our playlist includes songs that make us think of the non-stop caring that goes on, often silently. Much like a non-stop silent disco in the heads of family carers. 

Here is our ever-growing collective playlist, what would you add?

Our Tea and Cake Group Playlist:

1.Fleetwood Mac - Don't Stop

2.Elbow - One Day Like This

3. Ólafur Arnalds - Árbakkinn ft. Einar Georg

4. Nathan Grisdale & Mandi Fisher- Always Give Us Christmas

5.The Script - Superheroes

6.Thuy - Girls Like Me Don't Cry

7. Fleetwood Mac - Landslide

8. Rag'n'Bone Man - Human

9. Taking on the World

10. Free - All Right Now

Kindness, Connection and Co-Caring 

In this blog, Martina, one of the researchers on the Spinning Plates project, reflects on some of the discussions that we have had as part of our Tea and Cake group. Martina shares a few moments that have changed the ways we think about the project and about caring in unexpected and wonderful ways.

Kindness, Connection and Co-Caring 

Our Tea and Cake group recently had another wonderful meeting together. We try not to come to these meetings with too many fixed ideas about what we might talk about together. This means there is time and space for adults with learning disabilities and family carers to share what is important to them. This has opened up the conversations we have to some unexpected topics and directions. This expands the ways we all think about and understand caring. 

We all think this is an important part of working together as adults with learning disabilities, family carers of adults with learning disabilities and researchers. As one of our family carers told us: “it’s nice to have a session where people just listen, it sounds so simple but we are never really listened to. You guys are listening to me”. And we are. We are all listening to and learning from each other and all so grateful for this space in which connections and kindness matter. We wonder how these connections could be strengthened and kindness could be expanded beyond these research meetings so they might become a part of the wider connections adults with learning disabilities and family carers have with services and professionals.

In our meeting we also realised how strong these connections of caring are and how they work in a lot of different ways. One of our adults with learning disabilities shared with us lots of examples of caring that they do for the other adults with learning disabilities who they live with. It made us wonder if we don’t pay enough attention to the co-caring people with learning disabilities do for one another and the support they provide to their own family carers and the paid carers who work with them. One of our family carers reflected on the co-caring their own loved one does for them, reminding them of appointments or calming them when they need it. They asked us whether this is something we have been missing so far in our conversations and we think it is and it is something we want to keep making time and space for. 

We have lots to think about and together will continue to co-create new questions and directions for our thinking and writing about caring and increasingly co-caring, kindness and the importance of connection. 

How do we talk about ourselves as 'carers'?

In this blog, Martina, one of the researchers on the Spinning Plates project, shares some of the conversations we have been having about how to refer to ourselves as 'carers'.

How do we talk about ourselves as ‘carers’?

It sounds like a funny question: how do we talk about ourselves as ‘carers’?  But it is a question that we’ve been struggling with. We have been reading about the lives of carers of adults with learning disabilities and have found that there are lots of different ways of talking about carers. 

The labels ‘informal carer’, ‘family carer’ and ‘unpaid carer’ are all used to talk about people’s lives. These labels are used as if they mean the same thing but we don’t think they do. ‘Informal carer’ does not capture the complexities of being a carer. ‘Unpaid carer’ doesn’t make sense because an ‘unpaid carer’ might get carers’ allowance or have a paid job on top of their caring role.  The problem with ‘family carer’ is that not everyone who receives ‘informal’ or ‘unpaid’ care has a family member as a carer. Carers can also be friends and neighbours.  

We think this problem with the word ‘carer’ is one reason why lots of people who meet the definition of ‘carer’ as set out in law in the Care Act 2014, don’t see themselves as carers.  Members of our Tea and Cake group, who are advising our project, told us that they see themselves as ‘mum’, ‘dad’, ‘brother’, ‘sister’ and  ‘friend or neighbour’, not as a ‘carer’. As one person explained: “I don’t care for my sister, we exist together”. For the members of our group, ‘carer’ was ‘what the government calls me’, not something we want to call ourselves, even if sometimes we find ourselves in situations where we feel we have to - like dealing with social care and health services.

None of us like the word ‘carer’ but we find ourselves labelled this way in policy and by practitioners. 

We do have to call ourselves something. So we are going to use the term ‘family carer’. Each time we do we will explain that we are talking about people who love a person with a learning disability, who are also mum, dad, brother, sister, friend or neighbour. We will remind people that this group of carers save the government thousands of pounds a year by working so hard at caring.  

What is the tea and cake group?

In this blog, Martina, one of the researchers on the Spinning Plates project, explains what our tea and cake group is and why we have this group.

What is the tea and cake group? 

Part of the Spinning Plates project is a tea and cake group. This group is made up of carers of adults with learning disabilities and people with learning disabilities.  The group will meet regularly and flexibly throughout the project. People can take part at different times and in different ways to suit what works for them.  We will sometimes meet online together to chat about the project and how it is going and sometimes a member of the  research team will meet people individually online or in person.

The term Patient Public Involvement (PPI) group refers to a group of people,  not based in universities, who advise university researchers about their projects.

The tea and cake group is going to advise us, like a PPI group, and also share their experiences and stories of care to help us to understand carers’ mental health.  They are blurring the line between ‘research advisors’ and ‘research participants’ by doing both jobs.  

The three members of the university research team who attend these meetings are also carers so they too are researchers and carers. There are a lot of blurred lines in this research.

We have just had our first meeting where we spent time getting to know each other and sharing our experiences.  We have already learned a lot.

Here is a brief summary of what we learned in our first meeting:

• Caring is joyful - seeing the person you love doing something they love is joyful 

• Care is difficult - it is a fight

• Care is uncertain and fearful -  support can be taken away, there can be considerable dread about what might go wrong

• Care is invisible - people don’t see the intensity of work that takes place 

• Care happens in different ways - at a distance, in the home, over time

• Care is life-long - it changes shape over time but it doesn’t necessarily lessen

• Carers being together, learning from each other and supporting each other is important

• Carers  value being able to listen to how other carers and people with learning disabilities feel about their experiences of care 

Time to talk?

Hello and welcome to our first Spinning Plates Project Blog.  We want to use blogs throughout the research  project as a way of sharing what we are finding out as we go along.  

In this blog, Katherine and Sara, the joint project leads, explain a bit more about what the project is about, why they think it is needed and how they hope the findings from the project will change things.

What’s the project about?

This  project is about the mental health and well being of carers of adults with learning disabilities. It is being carried out by academics and community partners, including carers of people with learning disabilities and adults with learning disabilities, who are all part of the research team.  We want to find out what carers feel about their mental health and wellbeing.  We are interested in finding out more about what support they get, if any, and what they think about that support.  We would also like to find out what support they would like and who they would like to support them better. 

Why is this project needed?

There is a lot of research about carers’ mental health and wellbeing out there.  The problem is that when people think about the mental health of carers, carers of adults with learning disabilities are often left out. We think it is important to include carers of people with learning disabilities in discussions about mental health and wellbeing so that they can be supported well.  Our own experiences as mothers of sons with learning disabilities mean that we know how important this is. 

Time to talk?

There have been lots of campaigns in the newspapers and on television encouraging people to talk about their mental health and wellbeing, but sometimes that’s hard to do.  We know that it can feel really difficult to talk about the difficulties of caring when the person you are caring for is someone you love and who brings you joy.   We want to make a space to listen to people and to share their experiences.

How are you going to do the project?

We are going to work with carers and people with learning disabilities throughout the project. We want to ask them about their experiences in different ways. Carers and people with learning disabilities will work with academics to:

• Design and share a survey about carer mental health

• Design and carry out interviews about carer mental health

• Make and share short films (digital stories) about experiences

What will you do with what you find out?

We are going to create resources for carers, and people with learning disabilities. We want to share what is working well and what isn’t, what sort of support people value and what sort of support they don’t.  We will share these resources with policy makers and practitioners with the aim of changing policy and practice so that carers of people with learning disabilities have better access to the support they need.