Cafe Conversation

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together to talk about how we support carers better. ... “Being able to have a conversation with the person .... “se
Care Collective Cafe Conversation Thursday 20th April underCOVER 56 Kelburn St Barrhead Glasgow G78 1LR

On the 20 April we held our first Café Conversation in Barrhead. Nearly 40 people came together to talk about how we support carers better. Through a series of small group discussions we explored three questions:

What does ‘care’ mean to you? What might help you to take better care? How might we work better together in East Ren to take better care of each other?

The themes that came up through these discussions are set out below. Perhaps these topics and opinions will sound familiar to you? Or maybe your experience is quite different?

P lease let us know what you think.

Next Steps

We want to keep the conversation going. If you would like to host a Conversation Café, please get in touch and we will help you to make it happen. If you’d like to take part in a conversation, keep an eye on our News and Events page for a conversation near you. Members of the Care Collective attended the Carers Act Implementation Group (CAIG) hosted by East Renfrewshire Health and Social Care Partnership. We fed back the comments raised at the Conversation Café. Those at the CAIG are keen to ensure that the community influences the way the Act is implemented in East Ren and have asked the Care Collective to work with the community to make this happen. In addition to the Café Conversations we have been interviewing people with experience of caring for someone. We’ve also been interviewing social workers, people from community organisations and decision makers within the local public sector organisations. These interviews are helping us to build a rich picture of the current situation and to generate ideas for what could improve things in the short, medium and long term. If you would like to be interviewed and so share your experience and ideas, please get in touch. Based upon your opinions and ideas, we will be inviting people to come together again to identify what we can do together to take care of carers. We’ll be finding ways to make a difference and to influence the implementation of new legislation to ensure that it best meets the needs of people in East Ren.

Question 1

What does ‘care’mean to you?

This was a tricky question. Care means different things to different people – and at different times. At one end of the spectrum, people spoke about the need to care for one another – maybe even ‘interfere’ more if we think someone might need help.

“We’re all responsible.” “Care is love and inclusion” “There are too many isolated people. We should interfere more!” “It’s about making people feel that they matter, that they are valued” “I do it without thinking” “Sometimes it’s just sitting with someone”

However, caring for someone else isn’t always a choice and it can be traumatic and demanding. “It’s hard work – emotionally and physically” “It means prioritizing the needs of someone else” “It changes by the minute. Care is a changing story” “It can be life-limiting and hard to relate to” “It’s project management” “Becoming a carer can be traumatising. It’s sudden and it’s life-changing” “Outsiders don’t understand the impact. It’s our lives. You cannot walk away from care” “It means looking after someone who once was the main homemaker and now is unable to do anything

Question 2 What might help you to take better care?

Caring for someone else could be all-consuming and carers often felt that they had lost control. Independence and choice was important to carers as well as cared for people.

“How could I take better care? I wish I knew!” “For me care means frustration with services” “You have no control over who else is in your life making decisions” “Care means making changes to suit other people because of services available” “It’s about carers recognising that they need help” “I can’t plan ahead. It’s all consuming” “It’s very difficult to get more care”

Being able to talk to someone, without judgment and before a crisis, was important to lots of people: “Being able to talk before anything goes wrong” It’s hard to talk about it honestly. You can feel frustration and resentment. It would be good to be able to talk without feeling judged” “I have feelings of guilt. I don’t want to be away” “Being able to have a conversation with the person that you care for about how it is for you” “Having an opportunity to have the conversation early on” “Being listened to would help. I’ve had to go to my MP. ‘Professional’ behaviour has been lacking” “A consistent person to talk to” “It’s very isolating. People stop calling and popping round. They don’t know what to say”

A better relationship with services would be helpful. Demands changed regularly and carers wanted proactive, responsive support that provided the help they needed when then needed it. They wanted to feel involved in decisions about the person they cared for.

“I feel I’m always fighting social services”

“We need to be able to have a conversation at the point of need, not simply following a process”

“No two days are the same” “People don’t always know what’s best for them” “Things change quickly” “Someone just went over my head without consulting me and said ‘Option 3 would be best for him’” “The timescales to get things in place don’t work. They came to fit a stairlift two weeks after he passed away” “Being able to get the right help at the right time” “People have different needs. We need to have different options for different people” “Adapting to a person’s needs and working with them”

“There’s a power imbalance. There’s an ‘expert’ role and they make decisions about support packages” “I have to keep social work happy to prevent a difficult situation at the case review” “SDS is a shambles” “We’re not being treated as intelligent partners” “I need you to give me what I want, not what you think I need” “Strategies are static, but need is dynamic. People’s lives don’t work like strategies”

Question 3

How might we work better together in East Ren to take better care of each other?

People felt that there was a stigma associated with caring and that it would be better if we all talked about it more.

“We need to get rid of the stigma of being cared for or a carer”

“We need to change negative attitudes, culture and belief systems”

“We need to talk about it more. We should go out to schools and talk about it then the young people will talk with their parents about it. We should go to primary schools too”

“There’s still a belief that the eldest daughter will provide the care and make whatever sacrifice is needed” “People need to talk”

“We need to raise awareness. Get newspapers, TV and the media involved” “Education is key. It’s about supporting our young people to know what’s out there – but also that it’s ok to say no”

“Word of mouth is the best way to get to know things”

And by getting together, there was more chance of being heard

Access to information about the support available should be consistent and relevant.

“We need to campaign and we need activism”

“Knowing what is available shouldn’t be a lottery based on where you live or who you talk to”

“We need people power to change things” “We need a one-stop-shop for all information” “I don’t want campaigning out of any strategy” “We need better signposting to the help we need” “Community is a compromised word. We need to take this to the power structures”

Question 3 Continued...

People highlighted practical examples of what could be better “We need to consider the whole family, everyone who is affected, when assessing people for support” “It’s important to know where you are on the scale of things…where and when is help available and when should it be available?”

“More social support. People are isolated as a result of caring” “Older people are reluctant to ask for help. They need to know it’s ok” “Mental health support. Becoming a carer can be traumatic”

“Make information visible and accessible” “It’s the simple things – putting in a ramp.” “We need more information, for example, what is a ‘Carers Assessment’?” “The council should have a single point for all information” “Schools need to be more actively involved” “We need to be able to plan. Opportunities for regular respite would help” “It’s not about another aromatherapy course. We need more money, more resources”

“services should be joined up so we don’t have to repeat ourselves” “We should have respite for the carer, not just the cared for” “We need better promotion of what’s available. It’s interesting to know that someone could visit my wife so that I could go out” “We need more awareness of mental health and multiple conditions”

At the same time, there was skepticism about whether getting the community involved was just about saving money. “It’s about saving money. With community led support, it’s going nowhere. My Life My Way and Pilotlight are the way it should be but the council is making a mockery of it” “Some of us have twigged that its about saving money”

And the relationship between paid for carers and unpaid carers needed to be explored more “The Living wage will affect SDS care packages and ultimately it will fall on the unpaid carer” “care workers need more time and we need more continuity” “there are a lot of pressures on care workers – too much paperwork” “I need to be sure that the care provided is of the appropriate quality” “People say, ‘we don’t want people entering the profession for the money, but why not?” “It’s a race to the bottom. We pay carers so little. We need to value care more”

Get In Touch And Get Involved [email protected] Call Ruth 0141 876 9555

carecollectiveeastren @wecareeastren

Thank you to everyone who has been involved so far