CareLine SUMMER 2014
e The Fre for e MagazinCarers Unpaid Sussex in East
Information What’s on Advice Carers’ tips News
Supporting Carers in East Sussex
3 Introducing Melanie Mack Meet our new worker for the Eastbourne DGH 4 Helping you have your say Rachel, our new involvement worker, talks about being a carer and how she can support you to get involved 4 Carers’ voices groups Have your say on carers issues that are important to you 5 Silent voices conference Book your place now 6 - 7 Update from the April Carers’ Forums Find out what carers had to say about living healthily at the recent carers’ forums 8 - 10 Advice from the information marketplace Useful tips about how you can look after your own health and wellbeing 11 Carers Week 2014 Join in the Carers Week Quest and find out what’s happening locally 12 - 13 Carers’ Groups Francesca tells us about the new carers’ group in Hastings and talks about the condition specific carers’ groups in your area 14 Focus on Dementia Writer seeks carers of someone with dementia and WEALDLINK promote their community bus 15 Contact Care for the Carers How to get in touch or update your CareLine subscription 16 Support Us Make a donation to support the work of Care for the Carers
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Care for the Carers
Jennifer Twist Chief Executive, Care for the Carers
Being a carer is hard work, and juggling family life, working life and looking after a loved one can take its toll. Since the last edition of CareLine, I have had the pleasure of meeting with carers and organisations working with carers in Hastings, Crowborough and Eastbourne at the Carers Forums. The events focused on Health and Wellbeing, and there were lively discussions about the impact that being a carer can have, as well as some great updates on wellbeing opportunities available for those caring for a loved one. Special thanks go to our all our partners who joined us as guest speakers and who brought information stands. This year’s Carers Week is 9th – 15th June. Aiming to improve the lives of carers and those they care for, the 2014 ‘Carers Week Quest’ aims to identify as many carers as possible. Locally, all organisations working with carers are joining together to host a range of information events across the county. Details are on page 11 hope to see you there! At Care for the Carers, we’ve chosen Carers Week 2014 to launch our Silver Jubilee celebrations, marking 25 years supporting carers in East
Sussex. We are planning a range of celebrations throughout the year, which I also hope you will be able to join. Statistics tell us that we will all step in to provide care for a relative or friend at some point in our lives, and perhaps this is one of the reasons why for many, caring is simply something you do for someone you love. Nobody likes to be labelled, and not everyone will identify with the term ‘carer’, but caring does deserve to be celebrated. And unpaid carers absolutely deserve recognition and support. However you describe it, if you are looking after somebody who couldn’t manage without your help, I hope that you will read on. Best wishes,
PS. If you are a first time reader, please do contact us if you would like to receive CareLine (by email, or post if you can’t access the internet) - see page 15.
Supporting Carers in East Sussex
David Thompson Editor
Do you look after a relative, friend or neighbour who couldn’t manage without your help? If you provide unpaid support to a relative, partner or friend who is ill, frail, disabled or has mental health or substance misuse problems, you are a carer. You might feel that you’re doing what anyone else would in your situation; looking after your mum, son, or best friend and just getting on with it.
Welcome to the summer edition of CareLine, this issue is jam packed with information and advice from the April carers’ forums, you’ll also find details about what we’re doing for Carers Week. I’d like to say a special thank you to Linda Seddon for sharing her story on page 7 and also to Rachel and her wife Angela for agreeing to be on the front cover! I’d love to hear from you if you’ve got a story to share, or would like a particular topic covered, so please do get in touch - email me at davidt@cftc.org.uk or call me at the office on 01323 738390. I hope you enjoy reading this edition,
We are your local carers centre Care for the Carers is an independent charity and we have been supporting unpaid carers in East Sussex since 1989. Our team of staff and volunteers can provide practical & emotional advice. We can put you in touch with other carers, and offer a range of groups, training and events.
we're here to help! Contact the support team on
01323 738390 Or email us at info@cftc.org.uk
Melanie Mack Raising awareness for carers at Eastbourne District General Hospital I’m Melanie Mack, and I’ve just joined the Care for the Carers health liaison team. I’ll be working alongside my colleague Louise Smith who is based at the Conquest Hospital in Hastings. My aim is to help the hospital staff in identifying and supporting carers, particularly when the person they look after is admitted. I’m actually a carer myself, and think this can be a really difficult time when it’s important for your voice to be heard! I’m so happy to be here, and look forward to updating you again soon. www.cftc.org.uk
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We’re experts by experience If you would like to be more involved in having your say on carers issues then you might be interested in joining your local carers voices group, contact me to find out more (see below)
Introducing Rachel Hesterbanks A heartfelt “hello” to you all My name is Rachel Hesterbanks and I am very pleased and excited to introduce myself as the new Involvement Officer at Care for the Carers (I’m on the left!) You would most probably find it more interesting if I spend a little time telling you something about me, so here goes; I have lived and worked in East Sussex for the past 12 years and moved to Eastbourne 5 years ago with my wife Angela. I have spent most of my career working in a support role encompassing all age ranges and abilities, from my first role as a Youth Worker to my last role as a Contract Lead in Welfare to Work. Having lived in a small market town in North Hertfordshire and the hustle and bustle of East London, I love living so close to the coast and all it has to offer. 4
Care for the Carers
I am also a carer and have been for most of my life. When I was growing up I was a young carer for my mum and for the past 12 years I have cared for Angela who has Fibromyalgia and Osteoarthritis. I am therefore more than familiar with the many challenges and delights we as carers can face on a day to day basis.
What I’m here to do Now that you know a little about me, I should really explain what I’m here to do. As the Involvement Officer at Care for the Carers its my responsibility to make sure that carers in East Sussex get the chance to ‘have their say’, and that what you’re saying is fed back to those who need to hear it - the decision makers for heath and social care services.
Carers’ Forums The carers’ forums are public meetings where you can have your say on services that are important to you as a carer. Three forums are held twice a year (one for each part of the county), each
focussing on a particular topic. This way you can choose which forums you want to attend. Read about the latest forums which were held in April from page 6.
Carers’ Voices Groups I also organise and support the running of the Carers Voices Group meetings across the County. These meetings are fairly new and we are still looking for members to join, so if you’re interested please get in touch. You can read more opposite.
Meetings aren’t everyone’s cup of tea If meetings really aren’t your thing, or if you’re unable to attend, don’t panic! There are still lots of ways to have your voice heard. If you have an issue you would like raised or something you would like to say just let me know.
Contact me Email me at rachelh@cftc.org.uk or call me on 01323 738390
Carers’ Voices Join your local Carers’ Voices Group The Carers’ Voices Groups have been set up ensure that what carers across the county have to say, is being heard by the people who can make a difference to their support and services. To ensure local carers’ views are represented, groups are held in each of the 3 Clinical Commissioning Group (CCG) areas within East Sussex (High Weald, Lewes & Havens, Eastbourne, Hailsham & Seaford and Hastings & Rother). The groups will meet 4 times a year in each area. Carers will be supported to attend meetings with reimbursement of travel and parking expenses. We may also be able to contribute to respite costs if necessary, subject to available funding. Organisations working with carers feed in the views of the carers they are in contact with. Representatives of each group sit on the Carers Partnership Board and other key decision making bodies, to ensure that local carers’ issues and views guide strategic planning.
Interested? Email me at rachelh@cftc.org.uk or call me on 01323 738390
Silent Voices Conference 2014 Thursday 31st July, American Express Community Stadium, Brighton
“ The Ripple Effect ” Supporting families and friends of substance misusers The Silent Voices Conference is an opportunity for carers to share their experiences and learn about the services available to support those caring for a substance misuser. Take part in a day of workshops, holistic therapies, performance art and creativity Hear from keynote speakers and other carers Share your experiences and have your voice heard Explore a market place of information The day aims to empower families to make changes and keep to boundaries, look at the family system and different coping styles. Issues such as pain, stress and isolation will be looked at whilst promoting resilience and practical ways of coping.
Book Now For more information or to book your place visit www.silentvoicessussex.info, alternatively contact Rachel at Care for the Carers on 01323 738390.
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Many carers put the health of the person they care for first and forget about their own health. You’re just as important.
Interested? The full forum report will be available soon. If you would like to know more about the forums or how to get involved please contact Rachel for more information. Call 01323 738390 or email rachelh@cftc.org.uk 6
Care for the Carers
Carers who attended highlighted several common themes, issues that are faced on a daily basis: »» Feelings of guilt can often prevent us from participating in leisure activities as carers don’t want to ‘abandon’ their loved one. »» A lack of time and opportunity were also discussed. »» As greater pressure is placed on available funding, carers have said they are frightened by possible cuts to their services and how that will impact on their day to day existence. »» A consistently recurring concern across the forums was the need for short term respite care.
This April carers heard about the positive steps they can take to improve their health and wellbeing. At each carers’ forum, in Hastings, Eastbourne and Crowborough, carers talked about the everyday challenges they face when looking after their own health, and were able to find “If we want to go out for a couple out about the support available to of hours, it’s very difficult to find them locally. and organise respite care for such a short period of time. You Jennifer Twist, CEO at Care for just give up in the end and stay the Carers opened each forum, at home” introducing the focus of carers’ physical wellbeing. She explored the Each forum saw presentations from varying factors that can impact carers’ local organisations who work to physical wellbeing; ongoing stress, promote healthier living. These lack of time and motivation and the included: Health Trainers, The reality that carers tend to place their Conservation Volunteers Health needs at the bottom of the pile. Walks, the Carers Wellbeing Initiative and the Otago Strength & Balance “It’s easy to lose sight of your Exercise Programme. They each needs when you constantly have spoke about living more healthily to consider the needs of the and the support they offer to carers. person you care for…” Read more about Health Walks and the Carers Wellbeing Initiative overleaf. We all know that we should look after health, and for carers this is especially At the end of each forum carers important as the person you care for were able to peruse a ‘market place’ relies on you. Unfortunately, many of local organisations and speak carers still don’t put their needs with representatives on hand to first, and for many finding the time find out more about their services. or energy to do this can seem an Information from those who unachievable goal. attended is available on the next few pages.
Shared experiences At the Hastings forum Linda Seddon, a carer from Bexhill, spoke about the importance of staying healthy; sharing the challenges she has faced with her own health and how leisure activities can come in all guises.
Your feedback At each forum carers were asked to answer the following questions, here are some of their answers - do you agree? What’s your answer? Get in touch, see opposite for details
As a carer, what prevents you from taking part in exercise and leisure activities? “The person I care for doesn’t want to be left alone” “Lack of short term respite care – you can’t get it for less than a week” “I’m just too tired to think about exercise” “The pressure to do other things is unavoidable”
What steps could carers take to live more healthily? “Talking helps to manage the stress and feelings of guilt” “Get a dog! They help you exercise and reduce stress” “Counselling is life changing - it gives you the tools to cope”
I am Linda Seddon I live in Bexhill and am a carer for my partner. We met in 2000 and following a road traffic accident in February 2002 (whilst cycling to work) he has been disabled. He has never worked since! In 2006 I was diagnosed with Type 2 Diabetes which was a huge shock to me; to have to accept that I had this ‘chronic illness’. It took me some time to control my diabetes with tablets, but thankfully it now it appears to be under control! I found that by not eating as much sugar, I eat more healthily and I am eating more vegetables and less fattening foods. I also have osteoarthritis in both of my knees, which causes me some pain. Having these diagnoses has made me think about my caring role and the effects this would have on my partner if I was unable to do the things I do for him, as he relies on me to take him to his many hospital & doctors’ appointments. I do have a life outside of the home and caring - I am a Northern Soul DJ and play real vinyl records at events around Sussex.
“Grow vegetables!” “Gives you a real sense of achievement ” www.cftc.org.uk
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Walking is free, easy and has a lot of physical and mental health benefits which are easily achieved without getting sweaty or out of breath. If you’d rather not walk on your own, then why not try the Healthy Walks? They are particularly good for carers for a number of reasons »» provided for free, so there is no financial commitment »» already organised, meaning you can tag along »» no need to book or cancel, offering flexibility »» lasting no longer than an hour, leaving time for you to do other things before/ after the walk »» the person you care for is welcome too There is no need to worry about your fitness or walking speed. Everyone is encouraged to walk at their own pace. The walks are there to help people become more active, so they are mostly on the flat and on easy terrain. A back marker will ensure that nobody gets lost or left behind. Most walks have got routes suitable for wheelchairs and mobility scooters. Above all, the walks are very friendly and sociable. This combined with the fresh air will make you feel better and invigorated. Join in, feel good! To find out more about your local health walks contact Paula Hubens, TCV Healthy Walks Project Officer on 07740 899559 or email p.hubens@tcv.org.uk
For self led walks visit www.walk4life.info For short led walks visit www.walkingforhealth.org.uk 8
Care for the Carers
What are your wellness tools? by Coastal Wellbeing
Respite budget for healthcare appointments and training
Wellness Tools are tools that you have used to stay well or to help you feel better and sometimes we can forget what they are. They are things you think might be helpful to keep yourself well, help yourself feel better, enhance your quality of life, or assist you in meeting your goals.
When you are busy looking after someone else it can be all too easy to forget about your own health.
»» Your list of Wellness Tools can grow over time. »» Tools that are no longer useful can be removed from your Toolbox. »» The options for possible Wellness Tools are unlimited.
The respite budget is available to carers who are not able to leave the person they care for in order to go to a health appointment or training course.
Sometimes it’s the simple things that help to keep us well. From a cup of tea in the sunshine; chatting to a friend; being in nature; watching that programme that really makes us laugh to a stroll in the park, what are your Wellness Tools?
East Sussex County Council have asked Care for the Carers to allocate funding on their behalf to carers who have no care provision in place or who pay for care themselves. You can apply for funding to meet the cost of respite care for:
Do you ever feel overwhelmed by your responsibilities? Would you like the opportunity to explore what you need for your own wellbeing? A 6-week WRAP group offers carers the opportunity to explore safe and simple tools you can use to maintain your wellbeing and support you when you are facing challenges. WRAP groups are offered by Coastal Wellbeing in a variety of locations throughout East Sussex and are free of charge. For those who juggle caring responsibilities and work there will also be a group running outside of normal working hours. For more information please call Molly on 07507 734370 or email molly@coastalwellbeing.co.uk or call Lucy on 07598 323254 or email lucy@coastalwellbeing.co.uk www.coastalwellbeing.co.uk/wrap-for-carers/
»» Healthcare appointments such as visiting the GP, dentist, outpatients’ appointments or treatment such as physiotherapy, or counselling »» Training or courses to help you in your caring role such as dementia training or Moving and Handling For more information, or to request this funding please contact Care for the Carers. Call them on 01323 738390 or email info@cftc.org.uk If you already have home care or home based respite arranged by Adult Social Care, you can ask your provider to arrange for a care worker to look after the person you care for. Adult Social Care will cover the cost of the respite care in these circumstances. If you want to use this service you should contact your care provider in good time to allow them to arrange the replacement care. Please make sure you tell them as soon as possible if your appointment is changed or cancelled.
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The Carers’ Wellbeing Initiative
Information course for mental health carers
The Carers Wellbeing Initiative offers relaxation, wellbeing and social contact through a range of therapies tailored to the needs of carers experiencing physical and/or mental stress.
by Improving Carers’ Experience Project
Their therapies are focussed on relieving stress and other conditions commonly suffered by family and friend carers of those with learning or physical disabilities or those getting older in life and no longer able to live independently. Carers face a continual stress of coping with the practicalities of care along with the emotional strains and anxieties associated with maintaining a positive relationship and good quality of life with a loved one. Using recognised therapy techniques they aim to help carers improve their own wellbeing and ability to cope with their care responsibilities. They offer a range of therapies in a variety of settings including individual clinic appointments, group therapy and wellbeing days. To find out more, contact Andy or Sophie at: carers.wellbeing@gmail.com, call 07785 794445 leaving your name and contact details, or visit the website www.tcwi.org.uk
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‘Improving Carers’ Experience Project’ are running two free courses in the next few months for people supporting relatives or friends who have mental ill health. This would include diagnoses such as depression, schizophrenia, bi-polar affective disorder or personality disorders (not Alzheimer’s or Dementia), and includes information on mental health, the professionals who work in this area as well as time to talk with people who are going through the same thing. The first course starts Friday 30th May 10:30 to 13:00 for ten weekly sessions in Hastings. The second starts Saturday 31st for four consecutive weeks 10:00 to 16:30 in Eastbourne. Carers who have already accessed the course have said: ‘ Very relevant’ ,‘ We have learned a massive amount’ ,‘It has helped me to accept my situation’, ‘A very positive experience’. To book a place or for more information, please contact Alan on 01273 617100 or alan.icepro@btconnect.com
The very nature of caring means very often people don’t at first, or sometimes ever, identify themselves as carers. Rather, they think of themselves simply as wife, husband, son, daughter, mum, dad or perhaps grandparent, niece or nephew helping a loved one. Without the right help and support caring can have a devastating impact – carers can quickly become cut off with their physical and emotional health, work and their finances all hit hard. This year as part of the Carers Week Quest local voluntary and statutory organisations are joining forces to reach out to as many carers in East Sussex as we can. Throughout the week we’ll be holding information events in different locations across the county - details are on the right - as well as having information available in as many places as possible.
If you have some time to spare and would like to join the Carers Week Quest, we’d love to hear from you. Maybe you would like to help out at an information event or perhaps you could put a poster in your local shop or cafe? Call us on 01323 738390 or email info@cftc.org.uk to find out how you can get involved.
Supporting Carers in East Sussex
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12 Care for the Carers
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Writer seeks to interview family members of people with dementia for book East Sussex-based writer Patrick McCurry is looking to interview family members who care for, or are affected by, someone with dementia. The interviews are for a book Patrick is researching about the challenges facing spouses and adult children of someone with dementia. Patrick would like to talk to family members about the practical and emotional challenges of becoming a carer or of witnessing the effect of dementia on a close family member. The book will explore how family members who find themselves in the role of carer are often deeply affected emotionally by the experience – experiencing a range of feelings including anger, grief and helplessness. It will explore how carers handle these feelings, where they have found support and what has helped them. Interviews for the book will be on an anonymous basis. Patrick would like anyone willing to be interviewed to contact him at patrick.mccurry@talktalk.net
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WEALDLINK Your friendly, assisted door-to-door bus WEALDLINK is a charity based in Hartfield providing accessible minibus transport to the local community. They are experienced in providing dementia patient transport with dedicated, caring and specially trained drivers and passenger assistants. This minibus service is available for groups who need transport for dementia sufferers to day care centres on a regular basis.
Other services »» A pre-bookable, door-to-door shopping service for people who can’t use regular buses »» A trips service for community groups »» A trips club for individuals wanting to get out more on a regular basis
Coverage WEALDLINE covers the following parishes: Buxted (including High Hurstwood and Five Ash Down), Crowborough (including Jarvis Brook), Danehill (including Chelwood Gate), Forest Row, Frant, Hartfield, Maresfield (including Nutley and Fairwarp), Withyham (including Groombridge).
Get in touch Anybody wishing to register for the shopping service or find out more about our trips club, or any group wishing to book transport, please ring Dave or Eduardo on 01892 771332
Bexhill Caring Community We are a non-profit making charity that provides Day Centres for the Elderly in Bexhill which enables the carer to have a break during the day. The Day Centres were started in 1975 to provide somewhere for older people to visit, meet up with others, join in activities, enjoy entertainment and occasional trips out. Each centre is run by a team of volunteers headed by an organiser. Our transport will collect residents
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from and return them to their home. The buses each have a tail lift to enable easy access for those with difficulties. Morning refreshments, a two course home cooked lunch and afternoon tea are provided all this for just ÂŁ13 per day. If you are interested in becoming a volunteer or would like further information on our Day Centres please contact Leah Norman (Day Centre CoOrdinator) on 01424 215116 or email leah@bexhillcaringcommunity.co.uk
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Supporting Carers in East Sussex
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