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EAST SUSSEX CARERS’ FORUM “The True Face of East Sussex Carers” 9th June 2011 The last Carers’ Forum was a great occasion. 70 carers came along to discuss “The true face of East Sussex Carers”, and to launch Carers’ Week in East Sussex. There was also a ‘marketplace’ with useful practical information, all taking place in the fabulous setting of Ashburnham Place near Battle. Carers’ Stories Our 5 key speakers shared the challenges and rewards they had faced along their ‘caring journey’, and the lessons they learned along the way. We are very grateful to Dorothy Hatcher, Rosemary Freeman, Richard Grocock, Linda Pestano and Roger Strange-Burlong for their moving and inspirational speeches and for sharing their personal experiences. Many of you who attended the forum told us how important it was to hear that you are not alone in experiencing the hard times that can come hand in hand with caring. You also identified with the joys the speakers spoke of, and found it empowering to share lessons learned. After each speech, key points were discussed, and a snapshot of ‘the true face of East Sussex Carers’ gradually took shape on our Graffiti wall. Key messages Roger spoke of the different roles that carers juggle, the challenges of having ‘a hat for every occasion’, but also how finding the time for his own interests was important to him. Carers identified with this sense of ‘multitasking’, but many found that in practice it was not possible to pursue their own interests as well: “Sometimes we don’t get the time to be ‘Grandma’ or wear some of those other ‘hats’”. Rosemary focussed on the practicalities and paperwork facing carers: “My message to other carers is to keep all your paperwork – you never know when you will need it!”. She spoke of the importance of solidarity between carers, urging carers to support each other. Richard called for “the right support for carers at the right time”. He had been unhappy with the standard of care his wife had received, but when she was discharged from hospital did not receive the support and guidance he needed on how to safely care for her. Linda shared the emotional highs and lows of being a parent carer, speaking candidly about the difficulty of accepting her daughter’s disability when she was born, and also of the immense joy her daughter has brought to the family.


Both Linda and Dorothy spoke of the need to ask for support: “If you don’t ask for help and you sit there, you’ll be sitting there three years later.” For Dorothy and her husband, this had been difficult to do, as they felt uncomfortable accepting help. She encouraged others to do so though, speaking of the huge difference that it had made when ‘we realised we were not alone’.

“The right help at the right time makes all the difference. Sometimes it does work!”

What is important to East Sussex Carers? The graffiti wall at the forum developed to show key issues – the following few pages give a flavour of the most common themes. Working with ‘professionals’ Many carers voiced a feeling of frustration when working with professionals, the need to manage and coordinate all the people involved with the family, and to consistently fight for support and services for the person you care for. Sometimes I get frustrated with professionals – social workers etc, and have sworn at one. But they forget that you don’t get to finish work at the end of the day, have holidays and time off. Several carers advised others to ask questions and challenge decisions made by the statutory authorities if they do not agree with them: “You need to fight for everything”. It can be difficult for carers to put their trust in services, but one person gave encouragement: “You have to take a leap of faith sometimes and trust in things”. Challenge things! You’d be surprised how much legislation there is to support you. I went everywhere, was on TV – the welfare officer at Shelter was brilliant! Changes for carers are made by carers, I don’t have much faith in the Government. Several carers highlighted the importance of communication with health professionals, calling for improvements – they wanted to be included, listened to and treated with patience. Not feeling heard by doctors and consultants caused frustration, and some carers reported a mistrust of the care delivered in hospital. A further theme was a desire for more information from GPs. Professionals either talk to the carer and not the cared for person, or to them and then ignore you as a carer! Carers’ Assessments Carers’ Assessments prompted much discussion, as a recognised gateway to services. Several concerns were voiced, including that they focused more on the 2


cared-for person, that regular reviews are not taking place, and that carers had experienced inconsistencies in the paperwork used. Take somebody with you to assessments, to help you speak up. They won’t be as stressed as you. By the time you’ve had an assessment, things are reorganised and you get put on the back burner. The importance of good information came through strongly from carers at the forum. For some people, this was most important to guide how they undertook the practical elements of caring for someone, and others particularly called for information to help them navigate their way to the services and support they need. It’s difficult doing a job 24/7 when you never know if what you are doing is always correct. Maybe ‘shadowing’? There is no-one higher than you who you can turn to or who will say actually that’s right or wrong. It’s a permanent worry. Money Several carers referred to the financial impact that caring had had on their lives. Often, this was because they had needed to give up work to care. Financial issues are a key drain on people practically and emotionally. Carers also spoke about financial barriers to accessing support, for example training which would support them in their caring role, and highlighted a need for good information on how direct payments can be used. Where is all the money that carers save the government going? Cannot something be put back to benefit carers? Looking after yourself Carers reported that their own health and wellbeing had suffered as a result of caring. Many of the comments written on the graffiti wall spoke of a loss of confidence, patience and energy, and the toll that stress can take when it builds up over a long time.

“Music is great therapy. I’m into Peppa Pig!”

Not the life I expected or signed up for. I am always thinking of the situation. The depression is very hard when you feel that the person you care for is not the person she was. No quality of life whatsoever at the moment.

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Carers also shared how they cope with the pressure of caring, in some cases by working hard to think positively, or making time for themselves or to do something fun. Carers need to be positive to survive. Not knowing what might happen next is scary and can make you feel insecure. Relationships and Isolation A common theme was not being able to “switch off” from caring and how the “emotional fallout” impacts on friendships, relationships and your career, with many of the graffiti wall comments echoing how isolating being a carer can be. If you tell people you are a carer, their attitude changes. Now I don’t tell employers at interviews. Family and friends felt uncomfortable with our son’s disabilities – we lost contact with almost all of them because of the way they feel.

“My sister said, You’ve put your life on hold for us”

The importance of talking with other people and building a social network was highlighted by several carers. You don’t realise how strong you are – my friends keep me going, and other carers who I get together with.

A fundamental relationship in carers’ lives is the relationship with the person they care for. A theme through several table discussions at the forum was the evolution of this relationship and the emotional challenge this presents many carers. Change in relationship… Feeling of ‘being obligated’ can lead to resentment. Some carers discussed how hard it can be to care for someone when their behaviour is challenging. A range of situations were discussed – some people were caring for someone whose condition led them to be aggressive or manipulative, and in others carers founds that their loved one’s personality had changed. People spoke of the tensions that can be there in a relationship where one party depends more on the other, and also of how loving someone can make it harder to care for them “But you can do it better than me.” I was married for 68 years. My caring role had come to an end but I was still his wife and people forgot that.

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You miss a lot being a carer – when I lost my mum it was the first time I had been on my own. I feel as if there’s a book in me about all the funny stuff that my mum and I got up to! We have to laugh about things and we had fun together. The benefit of caring for my father at the end outweighed the negatives – it was great to have the time together Parent Carers Parents caring for a child with a disability or long term health condition expressed worries about the future, about education and about the support that their child receives. This is especially relevant through times of transition – between schools, as well as in service provision. Parent carers called for support to take holidays as a family, and that the needs of one child often impacts on their siblings. A particular concern was the support that their child will receive to live an independent life as they get older and if they, as parents and carers were not around in the future. Respite Discussions underlined that being able to take a break is vital, and that many carers would “You have to book welcome more opportunities for respite. being ill don’t you?” Common difficulties were the need to plan ahead and the quality and reliability of respite care. More flexibility in planning respite was called for, and carers spoke of missing spontaneity and to be able to do things as a family. In many cases, carers need to use their respite time for household chores and tasks, rather than a real ‘break’. Care at day centres is essential for us – it keeps our caring role sustainable. We could not continue without it. A familiar feeling many carers associated with Respite was guilt – for being away from home, taking time for yourself or for not being with the person they care for. Thank you Thank you to everyone who helped make it such special day – our colleagues at East Sussex Disability Association, East Sussex Fire & Rescue, Wellbeing, the NHS and East Sussex County Council, East Sussex LINk, Just Checking and ParentLink, our staff and volunteers who helped organise the day, and of course everyone who came along and took part. Jennifer Twist Care for the Carers

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June 2011