East Sussex Carers’ Forum Inform, Communicate & Educate 14th June 2012 East Dean Village Hall, East Dean
Speakers/Keynote Listeners at the Forum Roger Strange-Burlong Chair, East Sussex Carers Forum Jennifer Twist Chief Executive, Care for the Carers Tamsin Peart Strategic Commissioning Manager, Adult Social Care, East Sussex County Council
Thank you Thank you to everyone who helped make it such a special day – our colleagues at Age Concern Eastbourne, Department for Work & Pensions, East Sussex Library Service and Sussex Partnership Foundation Trust, our staff and volunteers who helped organise the day, and of course everyone who came along and took part.
Roger opened the meeting by welcoming everyone to the Forum and reminding people of the last forum in January 2012 on the theme ‘Respite for Carers’. All of the questions asked at that meeting have received a response from Adult Social Care and are detailed in the Forum Report but the Core Members of the forum feel that some of the questions still need to be followed up and they will keep this under review. Roger explained that the format of this Forum would be slightly different. Following feedback received after previous forums there would not be a Question & Answer Session today meaning that there will be longer for discussion between carers. Roger, Jennifer and Tamsin will be ‘Keynote Listeners’ during the table discussions and briefly feedback at the end of the meeting. As the theme of this Forum is ‘Inform, Communicate & Educate’ carers were encouraged to share information, experiences and tips and consider ways of obtaining and sharing information including through technology. Carers were invited to the Summer Event which would immediately follow the Forum. Various information stands and stalls would be set up in the Hall and in the field opposite. One of the activities available would be IT/Social Networking in the adjoining smaller hall, providing guidance and support for carers. Jennifer introduced herself as the recently appointed Chief Executive of Care for the Carers; she looks forward to continuing to work with local carers as in her previous role. She welcomed comments and suggestions from carers and looked forward to chatting with them following the forum. Jennifer told carers about the Carers Charter, a new project working with GP Surgeries and implementing recommended guidelines. Care for the Carers is encouraging GP Practices to work in partnership with us and sign up to the Carers Charter. The Practices can access information, advice and support to improve their practice and ensure that they are meeting the needs of carers. To achieve the Carers Charter GP Practices assess their current performance using self-assessment section and are then assessed by a team made up of a staff member and a volunteer from Care for the Carers. Care for the Carers are already working with a number of GP Practices and hope that the first Carers Charter will be awarded at the September Forum. Any carers interested in taking part or requiring more information should contact Care for the Carers.
Tamsin Peart introduced herself as the new Joint Commissioner for Carers, relatively new in post and with a wealth of experience previously working with carers in Brighton and Hove. Tamsin gave the following presentation:
What’s important to carers?
Tamsin Peart
• Talk to carers • Carers’ organisations • Social care and health services • Needs Assessment • Local communities
Strategic Commissioning Manager (Carers)
Carers’ Voices
Making a difference
“For the first time I felt my voice was as important as the doctors round the table.” “The more you tell your story, the stronger your voice becomes.” “You just want to speak out and change things.” “The carers’ contributions were very powerful and influential.”
• What support and opportunities best meet carers’ needs? • What works well now? • What else might help?
Priorities Reaching more carers with a range of services • Universal – available to all carers • Targeted – to meet specific needs • Personalised – to meet individual needs
Table Discussions There were four main discussion topics Realising you are a Carer Let’s Talk Money Tips & Info to Share Voice your Opinion During the morning over 240 comments were recorded by carers. There were certain themes which came up several times: Benefits and how to access them GP services Identification of carers Parent carers Carers were asked when they first realised they were a carer and there were a huge variety of responses. The majority of carers said it was a gradual realisation over a period of time and ‘your role changes’ but sometimes it can be subtle - it can take a long time to admit you are a carer. A lot of people do not consider that they are a carer – they are ‘doing what anyone would do’ - ‘looking after my wife/husband/child’
Caring has made me a harder person - I don't take any rubbish. I have become an angry and forceful person.
Labels are not helpful
As a parent it is difficult to take on the concept of the word carer as you care for your child automatically.
I have become a nicer person because of my caring experience - learnt not to be so selfish.
Carers need to have the choice to be labelled as a carer!
Make forms simple! Don't ask the same question more than once!
The majority of carers said there was a huge lack of knowledge about what benefits they are entitled to and where to go for information. Other carers were said to be one of the best sources of information. Many carers are still unsure about Carers Personal Budget - is it yearly? Is it an automatic entitlement? Question: Answers:
Where would you go for benefits information? Care for the Carers, Citizens Advice Bureau, Job Centres, Age Concern, no carer mentioned benefits department or Department of Work and Pensions.
Photocopy documents evidence and saves time if post is lost.
We need a Care for the Carers welfare officer to advise us - need to be independent from council.
NHS or Social Care who is responsible? You get pushed from one to the other - they don’t work together.
Get someone to help you fill in forms so you have an honest picture - it’s easy to miss things because it is part of life for you.
One stop shop needed for information - finance, entitlements, bus pass etc Make forms simple! Don't ask the same question more than once! No one bothers while you are well - Drs surgeries should help carers more. Can Care for the Carers have an online forum for tips and information? Knowledge is a powerful thing. Young carers not knowing what benefits are available and where to get them. Photocopy documents - evidence and saves time if post is lost NHS or social care - who is responsible? You get pushed from one to another. They don't work together. You might not like being involved with the benefit system but as a carer you need to be.
Feedback – Roger, Jennifer & Tamsin Roger confirmed that the morning had been very productive and the new format had worked well. Points picked up by the keynote listeners Emotional support when dealing with services – Care for the Carers, Citizens Advice Bureau, Age Concern. Personal touch important. More training needed. Support available when you become a carer. Finances – changes to benefit system and impact on carers. Frustration of bureaucracy - maze of social care system, form filling etc. Right questions – already need to know information before asking for help. Jennifer Twist will look at what Care for the Carers can do to support further. Tamsin had received feedback that carers felt they had been abandoned by system – either struggling alone or support had changed. Improvement needed to promote services and information. How can we work better with GP’s, Nurses and GP Receptionists? How to signpost carers to right help and support. Carers learn from each other – information share. Roger closed the meeting by thanking Margaret Hemsley, the Pearly Queen of Harrow for attending today – and also all the carers, volunteers and information stands. Over 40% of those attending the forum were there for the first time. 98% of carers rated the event as good, very good or excellent and the majority left the forum feeling informed and listened to. The next Forum will be held on Thursday 13th September 2012 at Robertsbridge Village Hall.