East Sussex Carers’ Forums “Prepared to Care?” 11th – 13th June 2013
Topic
“Prepared to Care?”
Venues
Hastings & Rother Area - St Marys Community Hall, Udimore, Rye Eastbourne, Hailsham & Seaford Area - Clinton Centre, Seaford High Weald Lewes & Havens Area - Maresfield Village Hall, Maresfield
Speakers Jennifer Twist – CEO, Care for the Carers Debbie Harris – Involvement Officer, Care for the Carers
Contents Page 3
Introduction
Page 4
Key Findings of Carers Week Survey
Page 5
Involvement
Page 5
New Engagement Model Explained
Page 7
What stops you from getting involved?
Page 8
What support can Care for the Carers give to help you get involved?
Page 9
How would you like to be involved?
Page 9
“Prepared to Care?”
Page 10
Relationships
Page 11
Finances
Page 12
Careers
Page 13
Health & Wellbeing
Page 13
Support Advice and Information
Page 14
Cares who had been offered a Carers Assessment
Page 14
Conclusion and Next Steps
Page 16
Next Forums Thank you
Thank you to everyone who helped at the Forums – our colleagues at Action for Change, Association of Carers, CCGs, Coastal Welbeing, East Sussex Fire & Rescue, Eastbourne Epilepsy, ESCC Carers Champions, Health trainer, Improving Carers Experience Project, Independent Living Service, Local Police, Reid-Briggs, Rother CAB, Rother District Council – Revenue & Benefits Department, SEAP, Sussex Oakleaf, Wealden District Council Home Energy Efficiency, Welbeing, our volunteers and staff who helped organise the day, and of course everyone who came along and took part.
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Introduction to the report During Carers Week 2013 Care for the Carers launched three new local carers’ forums in East Sussex with each forum representing a geographical area of the county. This report is a summary of the information provided at the forums and also a summary of the comments received from carers. It will be used to shape future forums and shared with organisations working with carers enabling the voice of carers to be heard. Before the forum we received some comments about the venues chosen – whilst we do always try to ensure that there is both car parking and public transport at the venues sometimes this is not possible. Carers have told us that they would rather we ensured a venue has good road links and parking as lifts can be shared between carers. The forum had two main topics 1. Discussed new ways of being involved and making carers voices heard 2. Asked the Carers Week Question “Prepared to Care?” This year, Carers Week asked UK carers if they were “Prepared to Care?”. Through an online survey, carers were asked to share the impact that caring has had on their lives and their experiences of getting support from professionals and services. In particular, the survey focused on carers’ relationships, finances, career and health & wellbeing. We asked East Sussex carers who attended the forums to complete the same survey so that a comparison could be made between the national results and the local experience. Through this report we have given a selection of the results from the completed surveys and will also use the results to inform future plans. At each forum we asked the question “Were You Prepared to Care?” and the overwhelming answer at all three forums was “No”; carers weren’t prepared for the changes that becoming a carer would bring - financially, emotionally or practically. At one forum the reply was “no carer can ever be prepared” Nationally, 75% of carers were not prepared for all aspects of caring; across East Sussex 73% were not prepared but across the county it varied: • • •
100% were not prepared in Hastings & Rother 80% were not prepared in Eastbourne, Hailsham & Seaford 38% were not prepared in High Weald Lewes & Havens
We hope that holding the forums in a variety of different venues will enable more carers to take part because they can be close to home and that we will therefore be reaching more carers. Overall 60% of carers attending the forum attended for the first time. (30% in Hastings & Rother, 59% in Eastbourne, Hailsham & Seaford and 78% in High Weald Lewes & Havens) and two carers attended forums because they had seen Care for the Carers’ banner on the day outside the venues but had never previously been in touch with us. East Sussex Carers’ Forum Report | June 2013
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The group discussions were felt to be very beneficial because both carers and partner organisations were taking part in the discussions and each group heard the others viewpoints. One comment from a carer: “I attend Care for the Carers forums as they are upbeat, provide a good place to air your views but are not depressing – other support groups I have attended are not so positive”.
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Involvement Debbie Harris spoke about the new ways in which carers can get involved and have their say on health and social care services in East Sussex. She also explained why we are now holding smaller local carers forums, rather than a larger countywide meeting. To help us to make sure that (a) these changes are for the better and (b) that we are doing everything we can to enable more carers to be involved, we asked each forum three questions: “what is stopping you from getting more involved”, “what support can we give to help you get involved?” and “how would you like to be involved?” Carers from each area identified similar barriers which are stopping them from being more involved – in particular the need for respite provision to enable a carer to attend meetings was raised. Following the forums Tamsin Peart, Strategic Commissioning Manager (Carers), Adult Social Care, East Sussex County Council has agreed to fund respite care for carers attending the Carers Voices Groups and travel costs will also be reimbursed. It was also suggested that CareLine, one to one contact, carers groups, coffee mornings and better use of the internet (such as online forums and video) would be a good way for all carers to have their say. Carers felt that the Carers Voices Groups need to be representative of diverse caring roles and relationships. Another suggestion was for a Contact Point within the community where carers could go to get information about involvement meetings and copies of CareLine.
New Engagement Model Explained Having received many questions about the new forums, we allocated time in the meeting to look in more detail at the revised involvement model. Following feedback from carers we are holding smaller meetings in several local venues to hear their views and experiences. The local areas are designed to align with Clinical Commissioning Group (CCG) areas. CCGs are NHS organisations, led by Doctors that include all GP practices in a geographical area. CCGs have the power to influence commissioning decisions for their patients. In East Sussex the areas are Hastings & Rother; High Weald Lewes & Havens and Eastbourne Hailsham & Seaford. Carers are invited to attend meetings in the area in which they live or attend a GP surgery (if not the same).
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In each area there will be 2 forums held each year and any carer can attend these forums there is no membership requirement. The forums are public meetings which ask questions about services important to carers, gather carers’ views and opinions and reports these back to decision makers. Each area will also have a Carers Voices Group which will have a membership and require regular attendance – they will meet at least four times each year. A Carers Voices Group will be made up of 10 carers, and 10 representatives of organisations who support carers, from each area. Each Carers Voices Group will nominate 3 members to sit on the Carers Partnership Board and members to sit on sub groups, task and finish groups and other groups as agreed. Chairs of the 3 Carers Voices Groups will meet at least twice a year with Care for the Carers, the NHS and ESCC to ensure that messages from carers are relayed as one voice county-wide. Care for the Carers will facilitate both the forums and the Carers Voices Groups and will produce a report from the forums and an agenda and minutes from the meetings of the Carers Voices Group.
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Diagram of Involvement Model
As can be seen from the diagram above any carer or organisation can pass information about carers experiences of health and social care to the carers voices groups and there is a variety of ways in which this can be done.
What stops you from getting involved? There was much discussion around this question. Some people do not want to take part in meetings – they find that their caring role is too onerous or have other commitments. They are happy attending forums a couple of times a year and feel that is sufficient involvement for them. A lot of comments were received about the timings of meetings however carers’ availability varied as each caring role is unique and each carer has their own individual requirements
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– for example, some carers can only do mornings and some afternoons. In future we will to try to alternate meeting times and venues to enable as many carers as possible to attend. Several carers were concerned that they would be overwhelmed with paperwork and didn’t know what was expected of them. A number of carers said they lacked confidence and felt they had no knowledge –by the very fact of being a carer, however, you are an expert by experience. People who use health and social care services are often the people who know most about them because they experience them in a variety of different ways. It is also very hard to commit to a regular meeting if you are a carer.
What support can Care for the Carers give to help you get involved? At the discussion tables lots of suggestions were made. In particular carers like being given time to think and not be ‘put on the spot’ – we will try to make sure that good notice is given about topics to be discussed and the themes of meetings so that carers can if they wish think about their responses before a meeting. This will also enable carers who can’t attend to send comments or questions to the meeting. One suggestion is that we should operate a buddy or mentor scheme for those new to the involvement work and this is something we will be looking to implement. Carers would like to be able to access involvement training on topics such as: •
Inclusiveness
•
Confidence building
•
Participation training
•
Knowledge around organisations
•
Mapping of involvement opportunities
It was also felt that many carers cannot get to meetings either because of their caring role or due to other responsibilities but they still have opinions and a voice to be heard. Carers called for information about and from meetings to be cascaded to all carers via a variety of methods detailed on page 9 and by having information available inplaces that carers already attend regularly.
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Text Messaging
Social Media
Surveys
Phone
Face to Face
Online Forum
How would you like to be involved?
By letter Home visits
One to one meetings
Newsletter and CareLine
Skype Micro- meetings of 2 or 3 carers
Prepared to Care? At the forums, Jennifer Twist shared some of the results of the Carers Week Survey. Throughout this report we have shown graphs comparing the local and national responses to the survey. Our findings show that, on average, East Sussex carers 12% felt better prepared to care than carers nationally. Almost 90% of East Sussex carers feel more stressed because of their caring role with almost half of carers suffering from depression because of their role. On a positive note almost 70% of East Sussex Carers have been offered a carers assessment compared to less than 50% nationally. In groups, we went on to explore the Carers week theme ‘Prepared to Care?’ and look at the impact that caring can have on carers’ lives, in particular relationships, finances, career and health & wellbeing.
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Carers talked about the importance of friends and family and how they are an invaluable support network; but many also told us how they have found it difficult to maintain these relationships. A network of friends is often based around a hobby or social activity if this has to be stopped then the friendships will often disappear. Carers who had maintained their friendships said that, often because of the difficulty of arranging alternative care it has to be them who entertains - and they may not have the energy or the will to do this. Friends and family can be shocked at the deterioration of their loved one’s condition which isn’t always easy to deal with. Friends who are also carers are good and understanding. A number of carers who attended the forum are carers of adult children and they shared that they had particular difficulties – some of which have been addressed in recent years: • • • • •
3 younger children not given so much attention since daughter was born who needed full time care “No sibling groups back then” Family don't understand condition - strain relationships Needed counselling but none available “frustration of not being able to do odd jobs causes conflict with husband"
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Finances Nationally, 7 out of 10 carers were not prepared for the financial impact of their caring role From taking responsibility for household finances, to coping with a reduced income, increasing utility bills and the impact on savings; carers told us how changes to their finances meant that they had to rethink their whole lifestyle. Just under 6 out of 10 carers at the forums said that they were not prepared for the financial impact of caring.
High Weald Lewes & Havens Area
Hastings & Rother Area
Eastbourne Hailsham & Seaford Area
East Sussex
National
Carers have...
...used savings to buy essentials such as heating and food.
...taken out a loan or fallen into debt because of their caring role.
...had a reduction in income because of their caring role.
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
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At each forum carers shared their experiences of the stresses that caring can bring to the workplace, such as the worry that taking time off ‘might not look good’ and the pressures to give up working and become a full time carer. Some commented about the lack of understanding, flexibility and sympathy from employers, but in contrast others spoke encouragingly of the support they have had. Several carers spoke about their experiences some years ago when they first became a carer and found that employers were not at all sympathetic – they had to make a choice – caring or career. It was agreed that nowadays most employers are ‘Carer Aware’ and sympathetic to the needs and concerns of carers. That said, 2 out of 5 carers at the forums have given up work because of their caring role and nationally, just under two-thirds of carers were not prepared for the impact caring had on their career.
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Health and Wellbeing
High Weald Lewes & Havens Area Hastings & Rother Area
Carers...
Eastbourne Hailsham & Seaford Area East Sussex National
...feel more stressed because of their caring role.
...have suffered from depression because of their caring role.
...have had to reduce the amount of exercise that they take.
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
In general carers felt that they put their own health needs and concerns after those of the person they care for. Carers cannot be spontaneous - an outing or event will often have to rely on care workers turning up on time or if not cancelling at the last minute. Not taking exercise, both due to lack of time and lack of money. Some health issues have arisen because of a caring role – for example back problems because of lifting.
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Afternoon In the afternoon of each forum, carers were encouraged to stay and explore a ‘market place’ of voluntary organisations, service providers and businesses; with representatives on hand for carers to meet and find out about their services.
Conclusion and Next Steps One of the main barriers carers identified to attending Carers Voices Groups was la ack of respite care – this has now been addressed by Adult Social Care funding the cost of respite for carers attending the meetings. What was very clear both nationally and locally is that carers are not prepared for the changes that a caring role can bring. We are encouraging carers to be “Prepared to Care” – one of the ways to do this is to ensure that you have a good network of support around you. At the forums Tamsin Peart encouraged carers to make contact with Adult Social Care as soon as possible and not wait for a crisis to occur. In doing this you may avoid a
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crisis but more importantly ASC will already know your circumstances and will be able to put help in place more quickly should there ever be an emergency. Overall carers told us that over the past few years things have improved somewhat for carers – they are now recognised and treated well by a number of employers. They felt recognised by many health and social care professionals for the important role they carry out and receive advice and support as necessary but stressed that it is still vital that the advice they receive is at the right time for them. It was felt that there is still a way to go but that many positive steps had been made. This report will be distributed to all who attended the forums, partner organisations and available on Care for the Carers Website. It will also be shared with: • • • • • •
Carers Partnership Board Carers Voices Groups East Sussex Healthcare NHS Trust East Sussex County Council Sussex Partnership NHS Foundation Trust Healthwatch East Sussex
Care for the Carers Actions: 1. In response to carers’ suggestions at the forums we have agreed a theme of ‘Mental Wellbeing’ for the next round of forums. In the Carers Week Survey you told us: 89% of carers said they were more stressed 79% felt more anxious 45% have suffered from depression We hope that a forum focusing on mental wellbeing will provide useful information to carers as well as an opportunity to explore with other carers how services can support carers to stay well. 2. We have prepared an Induction Pack for the Carers Voices Groups to ensure that carers have clear information on how to take part. We will look at ways to develop mentoring opportunities.
Carers Voices Group: Would you like to be a member of the Carers Voices Group in your area? The groups will be made up of 10 carers and 10 representatives of organisations who support carers. Groups will meet at least 4 times each year, you need to be available to attend the regular meetings and we can support you with respite care costs and travel expenses. If you would like to discuss this further please contact Debbie Harris – details below.
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Next Forums: Hailsham, Eastbourne & Seaford Area Tuesday 22nd October Herstmonceux Village Hall, Hailsham Road, Herstmonceux, Hailsham, East Sussex BN27 4JX High Weald Lewes & Havens Area Wednesday 23rd October Beechwood Hall, Beechwood Lane, Cooksbridge BN7 3QG Hastings & Rother Area Friday 25th October Robertsbridge Community Hall, Station Road Robertsbridge East Sussex TN32 5EA
Each forum will be held from 10:30 to 14:30 and will include a light lunch Theme: Mental Wellbeing Matters This October the carers forums will be looking at Carers’ Mental Wellbeing, as well as caring for someone with a mental health condition. Sussex Partnership NHS Foundation Trust will be speaking about The Triangle of Care and how carers can be kept involved and informed in the mental health services of the person they care for. Local voluntary sector organisations will speak about the positive steps you can take to improve your mental wellbeing. For more details contact: Debbie Harris, Involvement Officer, Care for the Carers on 01323 738390 or debbieh@cftc.org.uk
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