January 2012 by Care for the Carers

East Sussex Carers‟ Forum

„Respite for Carers‟

19th January 2012

Winter Garden, Eastbourne

Forum Report Contents Opening Remarks from Roger Strange-Burlong

Page 4

Review from Cllr Pat Ost

Page 4

Presentation from Keith Hinkley

Page 5 & 6

Table Discussions

Page 6

Questions to Keith Hinkley

Page 7 – 9

Closing Remarks

Page 9

Evaluation of the meeting

Page 10

Adult Social Care (ASC) Questions & Answers sent before Forum

Appendix 1

ASC Summary of Comments received before Forum

Appendix 2

ASC Answers to Questions raised at Forum

Appendix 3

Speakers at the Forum Chair of the Forum Roger Strange-Burlong Cllr Pat Ost Chairman of the Scrutiny Review of Respite Provision The Scrutiny Review Report is available at http://bit.ly/scrutiny_review_respite

Keith Hinkley Director of Adult Social Care, East Sussex County Council Jennifer Twist Partnerships Manager, Care for the Carers

Thank you Thank you to everyone who helped make it such a special day – our colleagues at Alzheimer‟s Society, British Red Cross, Crossroads Care and Prime Care, our staff and volunteers who helped organise the day, and of course everyone who came along and took part.

The Carers‟ Forum started with Roger welcoming everyone to the meeting and reminding people of the last forum. “The last forum seems a long time ago now – many of you will have been at the meeting at Ashburnham last summer when we launched carers‟ week and discussed „The True Face of East Sussex Carers‟. Our key speakers shared the challenges and rewards of their „caring journey‟, as well as lessons learned along the way. Many of you fed back afterwards how moving and inspirational their speeches were, and how it made a real difference to hear that you are not alone in experiencing the hard times that can come hand in hand with caring. As a carer myself, I really appreciated the good advice that many of you shared on the day and was encouraged to hear some of the „good news stories‟ about how the right support can change lives. Today‟s agenda concentrates on Respite Care and the importance of carers getting a break. You may recall that one of the first East Sussex Carers‟ Forums also looked at this really important issue – it will be interesting today to see how things have changed over the last year or so. I know that many of you have questions about the changes to home-based respite recently announced by the County Council, so I am delighted to welcome Keith Hinkley, Director of Adult Social Care, as our keynote speaker today. In a last minute, but much appreciated change to our agenda, I would also like to welcome Councillor Pat Ost, Chair of the Scrutiny Review of Respite Provision – I‟m looking forward to hearing about the outcomes from the review.” Roger paid tribute to Julie Bradford who died recently. Many of us know Julie for her great support of carers in the Hailsham area through her work at Crossroads.

Cllr Pat Ost – Chair of Scrutiny Review of Respite Provision Cllr Ost gave a brief overview of the scrutiny review and the next steps. “The Scrutiny Committee spoke to people about respite care and their experience of caring. A huge thanks must go to everyone who talked to us or was interviewed. We were impressed and humbled by the support of carers, without them the Health Service would collapse. 10% of the adult population of East Sussex is now a carer or will be in the future. Carers see themselves as supporters not carers. It is important to understand the range of respite care and what it means to different users – there are complexities both in provision and use of the service. Those we spoke to had varying experience of the use of respite – the language and names used by Social Services are often a barrier. There is a variation in support to carers from health professionals. We were unable to contact as many carers as we would have liked. Self help groups are recognised for the help and support the carers provide to each other and the signposting for more support. The aim is that all carers should receive a Carers‟ Assessment by Adult Social Care and be directed to help, information and support. 11 recommendations are made in the report. We need to raise the profile of carers and what they do within community – ESCC needs to be working in partnership with health professionals. There is still a long way to go and we will happily report back to this forum.”

Keith Hinkley - Director of Adult Social Care, ESCC Keith gave the following presentation to the meeting:

Key points which Keith emphasized were: There are common themes between East Sussex Joint Carer Strategy & the Coalition National Strategy. Plans Adult Social Care (ASC) are putting forward for next year show how much they value carers. They have worked together with carers to develop strategy and implementation plans. The changes to home based respite will take place from 1st April 2012 for new service users. For those already receiving the service there will be no change until your review. With home based respite there will be a reassessment to define whether there is personal and/or non personal care provided and then financially assessing the cared-for person. ASC are more flexible over support provided through personal budgets and are happy for service users to test them in this respect. There is ongoing commitment within the NHS to invest in carers‟ services to support carers and to raise standards nationally and locally. The NHS operating framework emphasises support for the role of carers, the problem has been getting money invested at a local level. Carer support is also highlighted in the strategy for Health & Wellbeing Boards. Keith then announced that the Primary Care Trusts (PCTs) have confirmed that they will be releasing funding available for carers‟ breaks via the NHS. With £1 million available for 2012/13 and that figure anticipated to rise to £4 million by 2014-5, this is great news. ASC needs to find a way of spending extra £1m they didn‟t think they had, and will seek carers views in their planning. Keith thanked all carers for their commitment over many years. Many carers have spent time working in partnership with ASC to increase support in East Sussex and ASC propose to continue to work jointly to provide for carers‟ needs with improvements and identifying gaps in services. Table Discussions Over 134 comments and questions were raised during the table discussions – the questions together with the answers supplied by Adult Social Care can be found in Appendix 2. A selection of the comments received: “We're not sure what's NHS and what's ASC - the services they provide are very similar. Then you receive a large bill and you realise that it's an ASC service...it's not good enough.” “I don't know what is free for carers and what isn't.” “Home based respite for me (carer) has enabled me to have a small paid job - charging will leave us worse off as the charge will cancel out the additional income to our household. “I can't come to the forum because I can't access extra respite.” “I have no idea what I have to pay for and what I don't - it's scary.” “Do senior officers understand what it is to be a carer? Would like them to shadow a carer for the day.” “Getting information is difficult for carers.” “Carer awareness training should be a mandatory part of professionals‟ training, especially GPs and those in the medical profession.” 6

Following the table discussions Keith Hinkley responded to questions raised by the carers. The questions are recorded in bold and the answers in italics. The extra money being provided for respite – will income be a barrier to receiving respite? Charges made for respite are not universal and are based around a financial assessment – all income coming into the home is taken into account as are related expenses. The Department of Health issue guidelines for financial assessments and ESCC follows these. If you do not agree with the assessment there is an appeals process in place. We will continue to review our processes as necessary.

A cared-for person might be willing to accept care but decline a financial assessment. What are the options on how to access respite in this situation? Each situation will be considered on its own merits; otherwise this could be seen as a way to avoid a charge. There is a balance to strike when respite is in high demand. It is our intention that charges made are reasonable and affordable.

I am lucky that we found such a caring home for my wife, my worry is for people following us - will there be enough homes if the government do not start building new places now? The Care Quality Commission inspects care homes for minimum standards and give ratings on how a home is performing compared to the standard expected. We need to make sure the whole community is aware of, and can access, advice and information that is available. There are still spaces in homes across the county but there is shortage in some areas – in particular those who have high dependency needs linked to dementia. We are working with care homes to raise the quality of care across the county - this includes training and retaining staff and an uplift in pay for specialist areas.

When we first become a carer the GP needs more awareness not only of recognising a carer but also of the information/services available. Education to GP’s is an ongoing challenge; leaflets do not have much impact. Delivering information and discussing with receptionists in surgeries is a better method of communication. To measure the outcome measures ASC will ask where the referrals are from. Also training hospital ward staff to refer carers – keep revisiting to back up. This is a huge problem and one that we will keep under review.

Choices for respite - how can carers be informed of options for respite and what is available? ASC has developed an online resource directory from April 2012 this will list services available. The next step is for a live directory to include vacancies available. This resource will be refined when feedback received. Not everyone has internet access, so plans are needed on how to inform others and all professionals where carers can go to receive information.

The PCT has promised in the past to consult with carers about how the carers’ breaks money should be spent but this hasn’t happened. How do we know that this will happen this time and that there will be transparency – carers should be consulted at much earlier stage. The extra money that will be available in the future is because of lobbying by Care for the Carers and the Princess Royal Trust for Carers. It is very clear that national money was flagged but not coming through to in East Sussex. You have my assurance that money will be available and carers will be involved in the planning of the spending.

What services are you commissioning for people with very specialist needs for instance those with autism? Also the Department of Health has recommended an Autism Partnership Board when is this likely to be set up in East Sussex? I am not in a position to respond to this now but will answer the question about an Autism Partnership Board in the report. Answer given following the meeting: There will be a project manager starting in April to specifically focus on autism. Initially, this will be for six months and the project will look at the key issues and make recommendations for the future in line with the National Autism Strategy. Part of this work will be to work with people with autism and their families to ensure that there are effective support services in East Sussex

Is the PCT extra money for everyone or just for those with a medical problem? You mentioned personal and non-personal respite care being distinguished and possible charges? The money is for short term respite breaks – NHS needs to plan on how money will be spent. We have an agreed strategy in East Sussex on how we can increase scope for support. Where home based respite care includes an element of personal care there will be a review of support provided and financial assessment for the personal care element. As with all assessments there will an opportunity for people to appeal if they are unhappy about how this is dealt with.

Respite is/will be too expensive and services will be lost due to high demand. In an ideal world all services would be free but we are not in an ideal world. Due to the recession we will have less money available over next 3-4 years and therefore individual financial assessment are necessary. Respite care is a top priority and demand will continue to rise. We need to sustain the increase to maintain the level of care.

Concerns about double charging – some carers are paying for two services – the person they care for is in a nursing home but then also charged for bus journey to another day centre. I cannot respond to individual cases in this session but our policies in East Sussex follow national guidance and are displayed on our website. There are processes available to look at individual cases and you can make an appeal/complaint against any charge you feel is wrong or unfair. 8

One carer commented that she had applied for respite to enable her to have a hernia repair (which had been caused by her caring role) because the assessments and care couldn’t be put in place in time she paid £1200 for respite care for her husband. I am sorry if we were at fault but I cannot stress enough the importance of speaking to Social Care Direct as early as possible.

Carer health and well being – if a carer has to go into hospital but cannot afford respite, he or she will have to cancel the operation and this may mean they can no longer care for the person they look after. For planned surgery contact Social Care Direct as early as possible and discuss financial assessment so care can be put in place as soon as needed. Individual circumstances will be considered.

We would like to see the guidance on Carers’ Personal Budget available for all to see. At the moment we understand it is on the ESCC Intranet could information also be shared on the internet? Yes – Keith will discuss with Alan Stenning who asked the question following this meeting and the answer will be in the report. Answer given following the meeting: There is information on Carers Personal Budget on the ESCC website. This includes details on what a Carers Personal Budget can be used for; who is eligible and what we take in to consideration when deciding on the amount of Carers Personal Budget. This information is also available in the information booklet ‘Do you look after someone?’ The ESCC intranet holds guidance and operational instructions for ASC staff. Close and Next Steps Jennifer gave an overview of the next steps, reminding attendees that views expressed today will be included in a report and any questions not answered today will be added with their answers as an appendix to the report. Evidence from today will guide Care for the Carers in understanding what is important for local carers and ensuring that we represent these views to key decision makers. Jennifer welcomed Keith‟s announcement of new funding. Government money provided to the NHS for carers‟ respite had been a key concern at our first forum, and the Core Members of the Carers Forum have consistently called for transparency on this issue. It is great news that NHS Sussex has identified the funds. Roger closed the meeting thanking everyone for making it such an interesting day.

We look forward to seeing you at future forums: 10.30 – 12.30 on Thursday June 14th in East Dean followed by the ‘Summer Event’ Thursday September 13th (Venue to be confirmed but planned to be in Hastings/Bexhill Area)

Evaluation Feedback received was very positive overall with a very large proportion of people stating that the venue, meeting and organisation were good, very good or excellent. 56% of people felt more informed about respite care at the end of the meeting than they were when they arrived. As part of the evaluation form we asked those attending to describe their main feeling at the end of the meeting. The results can be seen in the following chart:

Without friends I would not have coped.

Carer and cared for may have different opinions - carers view should be taken into consideration especially if cared for person has dementia, etc.

Sounds good that there's more money for respite - but how can you access it if the quality is not good- you still worry!

I put my husband first everyone else puts me second. I have a voice and rights of my own.

You should ask for each of you to be assessed individually - they should do it as a matter of course.

Respite is key for carers - this feels like another barrier to accessing a service for me as a carer.

Changes to home-based respite: Q&A In November 2011 we wrote to carers who use our home-based respite service about changes to the service that will apply from April 2012. Carers were sent a letter, Q&A and reply slip, which gave them the chance to submit questions for the forum event (hosted by Care for the Carers) and make comments on the changes. We wrote to over 470 carers and received 15 questions and 46 comments. The answers to the questions we received are shown below. We have organised the questions and answers by topic areas. Thank you for taking the time to comment and ask questions. If you have any further questions about the changes to the service please contact us: Email: policy&strategyadmin@eastsussex.gov.uk Telephone: 01273 481 565 Barry Atkins Head of Service, Strategic Commissioning (Older People and Carers)

Financial assessments and annual reviews 1) Following the financial assessment, what happens if my daughter can't afford the service? The financial assessment is made using our Fairer Charging policy, so we anticipate that the contribution you are asked to pay is one that you can afford. If someone wishes to use their resources to buy other services rather than respite, then care managers will assist carers to find the „universal services‟ that can offer them support. Universal services are those services that are available to all carers, even if they have not had a carer‟s assessment from Adult Social Care. These services include emotional support, befriending, and support groups, which are provided by local voluntary sector organisations and are not subject to a financial assessment. 2) Please inform us of the threshold of savings/income above which the respite grant will not be paid, this will tell us if it is worth undergoing the trauma of means testing? The capital limit for means tested services is currently £23,250. The Department of Health reviews this figure each April. We have not been notified of any change yet, but we expect to get this information in February Appendix 1 Page 1

2012. Our fact sheet 7 explains how we carry out financial assessments for support at home. You can download copies from our website or request copies through Social Care Direct (0345 60 80 191). 3) If the person cared for is getting maximum funding, does it mean that moving the respite from the carer's name to the cared for person's name will result in the 'cared for' person having to pay privately for this service? If the cared-for person is already receiving a service and they have been financially assessed then their contribution should not change. 4) Are annual reviews automatically triggered from the date respite is first used? Or only if there are new problems or circumstances have arisen? Would they be by phone or face-to-face? Will financial assessments on existing cared-for be by visit or will they be expected to complete forms? Haven't these already been completed for Cress? Annual reviews are scheduled to take place a year after the first assessment or the latest review. If someoneâ&#x20AC;&#x;s needs change they can contact us to arrange an earlier review. The review may be undertaken over the phone or face-to-face, depends on the individualâ&#x20AC;&#x;s circumstances. 5) As a carer I opened a bank account exclusively for payments under the direct payments scheme. Will this arrangement alter under the new scheme? If you would like to continue with a direct payment for the service the new arrangements will allow for this. 6) Will I as a carer be expected to subsidise my daughterâ&#x20AC;&#x2122;s respite if she can't afford it herself? The financial assessment is made using our Fairer Charging policy, so we anticipate that the contribution anyone is asked to pay is one that they can afford.

Funding for respite 7) With reference to the report by the Princess Royal Trust for carers, why has the County Council not consulted with the NHS for access to the additional government funding? Adult Social Care and our partners in NHS organisations continue to support carers in East Sussex. The health and social care system faces significant financial challenges and increase in demand. Each organisation will face difficult choices in terms of achieving financial balance. Appendix 1 Page 2

8) Is all care reserved exclusively for those who have never worked or saved? Are those of us who have done so and paid tax and NI CHTBS, all our lives deemed to be philanthropists who live only to serve others? Are you really of the opinion that we are perfectly willing to forego all lifeâ&#x20AC;&#x2122;s little luxuries like sleep, food, heat and light and just bask in the knowledge that we have paid for other peoples care and support from the state? Can't we please just have or NI contributions back as the scheme was clearly mis-sold to us. No where in any of your numerous helpful little pamphlets in various languages does it say that the less you contribute to the state in your working life the more help you can expect when you are old, you should make this clear not just to the recipients of state help but also to those who are forced to make extortionate contributions from their earnings in the mistaken belief that they too can expect a little help in return, if a private insurance company operated a scam of such proportions they would be closed down, why arenâ&#x20AC;&#x2122;t you? Adult Social Care will continue to support those most vulnerable and in need. Health services continue to be 'free at the point of delivery'. The national debate continues as to the long-term funding of care.

Discount card 9) Will the discount card be issued to carers regardless of where they live in East Sussex? Or will it be confined to the Eastbourne area only initially? The Carers Card is open to any carer in East Sussex who has been assessed by Adult Social Care and who is providing regular and substantial unpaid support. The carer will be able register for a card at any library in East Sussex. The Carers Card is a 12 month pilot and the aim is to extend the project across other areas of the county. The scheme will be countywide but may develop at differing pace in each area. 10) The 'concessions' in shops (especially as they are in Eastbourne) is not something I would need or find useful, parking concessions are really vital, it is hard to find parking when bound so much by time and I spend a lot on parking? If you care for a person who is unable to walk very far to or from your car, they may be eligible for a Blue Car Badge. Whether you are a driver, passenger or have a disabled child, you can usually park for free, and for as long as you need, at on-street parking meters and pay-and-display machines. You can find out who qualifies for a Blue Car Badge, and print out an application form, from our website. Or you can call Social Care Direct on 0345 60 80 191. In some parts of the country hospitals have Appendix 1 Page 3

offered carers subsided parking fees when they are attending medical appointments with their cared-for person. We will continue to explore the possibility of a similar scheme locally.

Relating to the Q&A doc 11)

When did legislation change to define respite?

Respite care services are “services provided to a disabled person which enable the carer to take a break from his or her caring responsibilities.” In other words, respite care support is legally a community care service not a service provided under the Carers and Disabled Children Act 2000. This state of affairs has been explained by the Department of Health in a „Questions and Answers‟ note that accompanied the 2000 Act. As respite care services are community care services rather than services provided under the Carers Acts, the local authority is legally obliged to provide services to meet this need and the person receiving the service will be liable to contribute to the cost of the service. 12) With what other services in Adult Social Care will these changes bring the 'home based respite service' into line with? Respite can be delivered through a number of services including residential care and day care. Historically, both of these have been delivered as services to the cared-for person. The changes to the home-based respite service bring it into line with the arrangements for residential care and day care or day opportunities.

Service delivery 13) If my daughter does not receive respite due to lack of staff or sickness how do the financial implications get managed? If the cared-for person is financially assessed as able to make a contribution, they will not contribute any more than their service costs. The amount of their contribution is against the value of their personal budget, which can be used flexibly so services users can vary their care over the year.

Carer’s grant 14) If respite is now to be means tested, will the carer’s grant also be means tested? East Sussex County Council provides services specifically for carers , such as the Carers Personal Budgets (a financial contribution towards something specific that will support you in your caring role) and the Carers Respite Emergency Support Scheme (CRESS). CRESS can provide up to 48 hours free respite should the carer be unable to care due to an emergency. Appendix 1 Page 4

These services will continue to be exempt from a financial assessment. Carers can also access a range of 'universal services'. Universal services are those services that are available to all carers, even if they have not had a carerâ&#x20AC;&#x;s assessment from Adult Social Care. These universal services include emotional support, befriending, and support groups, which are provided by local voluntary sector organisations and are not subject to a financial assessment.

General 15) At present, due to health problems and because my wife and I are carers to each other, we receive 3 hours per week respite care, arranged by social services. What will happen to this arrangement after 1st April 2012? If you are already receiving a home-based respite service then these changes will not affect this until after 1st April 2012. You will continue to receive a free service until your next annual review, or until your needs change, either as the carer or cared for person.

Appendix 1 Page 5

Changes to home-based respite: Your comments In November 2011 we wrote to carers who use our home-based respite service about changes to the service that will apply from April 2012. Carers were sent a letter, Q&A and reply slip, which gave them the chance to submit questions for the forum event (hosted by Care for the Carers) and make comments on the changes. We wrote to over 470 carers and received 15 questions and 46 comments. We have analysed the comments to identify common topics that are covered by more than one person, with most people covering more than one topic in their comment. The chart below shows the top five topics covered in the comments. It is clear from the chart that people highly value the respite service (covered by 15 comments) and are concerned about the impact of losing the service (7 people). Linked to this, 8 people said they wonâ&#x20AC;&#x2122;t be able to carry on using the service if they have to pay and 5 people felt they already pay too much for care services.

Top 5 topics covered in your comments

Concerned about impact of service stopping, eg, on people's health (for self or for others), 7 Won't use the service if they have to pay, 8

Paying too much for care already, including cost increases, 5 Comment on personal situation, 23

Highly value/could not do without the 3 hours respite, 15

Appendix 2 Page 1

Other topics covered by more than one person were: the view that the change isn't fair (5 comments), the fact they can't afford to pay for the service (5 comments), their hope that they will still qualify for the free respite service (3 comments), that they have stopped using the service already as they werenâ&#x20AC;&#x2122;t satisfied with it (3 comments), and that they don't feel carers are valued (3 comments). We asked carers for their comments as we recognise that the change may affect people and the person they care for. This is reflected in the fact that a small number of people say they will not be able to continue using the respite service if they have to make a contribution towards the cost. Why we are making the change The financial assessment is made using our Fairer Charging policy to work out how much the cared for person will have to pay towards the cost of a service. We apply the same rules to everyone to make sure our resources are allocated fairly. The amount you pay will be based on what you can afford. The reasons for making the changes to home-based respite are: To ensure that respite is treated consistently across Adult Social Care. The change will bring home-based respite into line with other services we provide, such as home care and day opportunities. We see this as being a fairer use of council resources. To ensure the respite service is sustainable in the long term, as the number of carers using this service is increasing. To help the most financially disadvantaged people to be able to access flexible, home-based respite services. Thank you for taking the time to comment.

Appendix 2 Page 2

Responses from ESCC Adult Social Care to Questions Asked at East Sussex Carers’ Forum January 2012 All the questions and comments recorded or asked at the forum were sent to ASC – the following responses have been received from ESCC. Questions have been grouped together where appropriate. We have collated the questions into categories based on commonly occurring themes.

Changes to Home Based Respite We still don't feel clear when are people going to be expected to pay for home based respite? If you already receive a home-based respite service you will not automatically be charged for the service from 1 April 2012. The changes will take effect after this date. You will continue to receive a free service until your next annual review. Or, if your needs change, or the needs of the person you care for, you will have a re-assessment. What will happen to those who get 3 hours at the moment and will be charged for it but can't afford to pay? Will they lose the service? The financial assessment is made using our Fairer Contribution policy, so we anticipate that the contribution the cared-for person is asked to pay is one they can afford. What advice do you have for carers who have home based respite at present and use that time to work; charging for respite will prevent those carers from working, increase isolation and dependency on benefits. What do you advise? The financial assessment is made using our Fairer Contribution policy, so we anticipate that the contribution the cared for person is asked to pay is one they can afford. The national carers’ strategy ‘Carers at the heart of 21st Century Families and Community’ emphasised the need to enable carers to combine paid work with their caring responsibilities in order to improve their financial position and provide them with a life outside of their caring role. A key work-stream of the joint strategy is the Working Carers Action Plan Sub-group that is working to raise awareness of carers’ rights with other local employers. We have commissioned the Newhaven Community Development Association to provide training for small and medium size employers in adopting carer friendly policies to support their employees manage work with their caring responsibilities. Won't these changes have an impact financially on the carer? Home-based respite will be treated as a service for the person receiving the respite support from the care worker (in other words the cared-for person) rather than the carer. A financial assessment of the cared-for person will determine any contribution for using the service. East Sussex County Council provides services specifically for carers such as a Carer's Personal Budget and the Carers Respite Emergency Support Scheme (CRESS). These services will continue to be exempt from a financial assessment. How much is spent on home based respite currently? Could the extra NHS money support this to remain free to carers? In 2010/11 funding for this service was £722,940. The change reflects the way legislation defines respite, and matches the approach to charging that we already use for other community-based services we provide, such as home care and day opportunities.

Appendix 3 Page 1

Will charging mean more flexibility - system too rigid currently â&#x20AC;&#x201C; I was told I could not bank or change the allocated 3 hours a week I receive? There is a framework of approved organisations that provide the home-based respite service for carers. All the organisations in the framework can offer flexibility on when you get respite, and the opportunity to 'bank' hours. You should discuss how and when you would like the service delivered directly with the provider to ensure a care worker is available. If this cannot be accommodated by your current provider then you can ask for a change of provider or a Direct Payment. What should the respite provider do? The service aims to be appropriate to the needs of the carer, and the cared-for person. A care worker looks after the cared-for person in their own home, normally for three hours a week, while the carer has a break. They can provide a sitting service, assistance to the cared-for person with a chosen activity, personal care, and/or administer medication. What you and the cared-for person want the care worker to do while you have your break will be discussed at your assessment and agreed as part of the cared-for person's support plan. The respite provider should also carry out an assessment in order to agree the service required. Carers will have to subsidise respite costs - how does the County Council think we can afford it? The impact of carers having to find extra money will be significant in particular on the households in the greatest financial need. This will be a barrier to accessing respite and in turn will affect carers health and wellbeing. Respite care services are services provided to a disabled person which enable the carer to take a break from his or her caring responsibilities. In other words, respite care support is legally a community care service not a service provided under the Carers and Disabled Children Act 2000. This has been explained by the Department of Health in a 'Questions and Answers' note that accompanied the 2000 Act. As respite care services are community care services rather than services provided under the Carers Acts, local authorities are legally obliged to provide services to meet this need and the person receiving the service will be liable to contribute to the cost of the service. How do you define 'personal' care? My Mum just needs help going to the toilet and supervision (dementia early stage) will respite be free for us? What is the difference between personal and non-personal care? How are we charged at the moment and how will it change? Daughter taken to gym with carer, non personal but changing and showering, etc, personal - will charging change? Can you explain the differences in the assessment and charging process for respite with and without personal care? This is the first time it has been mentioned. Respite - If personal care is involved it is free but if personal care is involved then a charge may be made on the cared for person. So, if a sitting service is needed it is free but if the cared for is slightly more dependant and needs help to go to the toilet a charge would be made - there seems little common sense in this. (Personal care needs provision cannot also act as a sitting service at the same time. Both are different needs.) Personal care is any task of an 'intimate nature'. A service is considered to be of an intimate nature if it involves physical contact such as lifting, washing, grooming, feeding, dressing, bathing or toileting the person cared for.

Appendix 3 Page 2

Rother Local Strategic Partnership would like to know what assessment you have carried out on the impact that this change of policy will have on carersâ&#x20AC;&#x2122; health and wellbeing. To highlight the potential impact on residents of a Council policy, strategy, project or service, we undertake an Equalities Impact Assessment (EIA). EIAs help us to meet the needs of the whole community and deliver better services. They make sure we promote equality, and meet anti-discrimination and equalities legislation. An EIA has been undertaken to allow us to assess the impact of the change in charging for home-based respite service for carers.

Respite I can't access 'universal services' without respite, what do you advise that I do? Universal services do not allow me to have a rest. Universal services are those available to all carers. These services help carers get support at an early stage. These services are provided by the local voluntary sector and some of these organisations can offer some form of respite care to the cared-for person to enable the carer to access these services. Carers are normally eligible for a break following a carer's assessment or review if they meet our eligibility criteria. How can we access respite if no one ever tells us about it (been caring many years)? During the carer's assessment we'll talk to you about the care you provide and the impact this has on your life. We'll look at the support you're getting already and whether there are any other services that could help you. Carers are normally eligible for a break following a carer's assessment or review if you meet our eligibility criteria. If you feel that your needs, or the needs of the person you care for, have changed, then contact Social Care Direct to arrange a review. It is very hard for self-funding service users to book residential respite well in advance. How can Adult Social Care help self-funders to book respite in care homes? What about holiday respite at home? Rolling respite for carers and service users supports carers and the person they care for to access rolling respite support in a residential or nursing home. The process gives carers and the person they care for greater choice and control in managing their own respite. To ensure respite is booked when needed, carers and service users should pick two or three preferred homes. A provisional booking or bookings can be made with their first choice of provider and most homes will confirm the booking about a month before it is due. There may be occasions when the bed is unavailable, and if this is the case then the carer can contact their other preferred choices. There are over 220 bed vacancies across the county. Should you be unable to secure your preferred options, the Adult Social Care Service Placement Team can assist you in securing respite. I was told there should be free respite for rural areas in particular. I live in Nutley so enquired but no-one rang back and now the number has been withdrawn from service. Is Nutley classed as a rural area and does this respite exist? The British Red Cross has volunteers who offer a sitting service for carers in the North Wealden area. This is a short- term service, normally up to six weeks. The aim of the service is to provide help, and to signpost carers and their families to organisations who can offer support and information. The British Red Cross can be contacted on 01273 227 800.

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Please clarify options for holiday respite. Instead of my mother going to a care home can she be given a lump sum (Direct Payment) to buy her own live-in care? During the social care assessment the assessor will discuss what you want to achieve and different ways to support your needs. If the person you care for qualifies for support from Adult Social Care they can choose to buy the support they need with Direct Payments. Direct Payments means that instead of Adult Social Care organising and providing the services, we can give them an agreed amount of money. They can use this money to organise and buy the care and support needed. This means that the cared-for person has more choice and control about how their needs are met. Our fact sheet FS10 explains about Direct Payments. You can download a copy from our website or get copies through Social Care Direct (phone 0345 60 80 191). How as carers can we be informed better about the choices available for respite? Our Online Resource Directory will be available from April 2012 and will give up-to-date information about care and support services available in your local area. My main problem is that my husband won't have respite care and doesn't think I need a break. What happens then? How can I cope? (Is it for me or him?!) People cannot be forced to accept services they do not wish to receive. As a carer you have a right to request an assessment of your needs even if the person you care for has refused an assessment or support services for themselves. As part of the assessment, assessors can advise carers about on other services that can offer them support. We offer carers a range of universal services to help carers get support at an early stage. These services are provided by the local voluntary sector and some of these organisations can offer some form of respite care to the cared-for person to enable the carer to access these services. I am a carer. I need a hip operation. When I go into hospital my wife will need care and respite. Who will be expected to pay for that? I can't afford to, so should I cancel my op and just wait until I am no longer able to care because my health has got too bad? If you need to go into hospital and the person you care for will require care you should contact us as soon as possible so we can work out how any support needed is to be provided. As part of the needs assessment we will carry out a financial assessment to work out how much the support should cost.

Extra Money from PCT Extra Money - How will the commissioning sub-group be able to manage the extra resource in the tight timescale? How can the group monitor the services effectively? How will they decide how the new money is spent? I am concerned about them 'rushing at it'. The Commissioning Sub-Group was replaced with the Carers Strategy Implementation Group which reports to the Carers Partnership Board. The Carers Strategy Implementation Group is a group of carers who wish to participate at a strategic level in the development and monitoring of services, reporting back to the Carers Partnership Board. The group's function is to monitor organisations funded to deliver carersâ&#x20AC;&#x2122; services and to contribute to commissioning decisions. All authorities receiving these funds will be working to the same timescales. We are unable to begin to spend funds until a needs analysis has been undertaken and plans published. This must happen by October 2012.

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How will extra £1 million from NHS be spent - need to be transparent from the start How and where will £1m be spent? Will money be spent on planned respite or emergency respite? Who will ultimately determine where the money will go? What is the greater need? In response to how to spend this extra money, across the board or targeted? How will carers access the NHS funded carers breaks? The County Council has signed up to the East Sussex Joint Commissioning Strategy for Carers’ Services 2010-2015 that outlines the support for adult carers in East Sussex over the next five years. It sets out what sort of services we intend to provide ourselves or to commission from third sector organisations. Four Action Groups have been formed to monitor the implementation of the four key workstreams of the Joint Carers Strategy 20102015 with each sub-group regularly reporting back to the Carers Partnership Board . Plans will be shared once we have more information from NHS colleagues through the Carers Partnership Board. The NHS Operating Framework for East Sussex will require a needs assessment to be undertaken and an action plan to be published. Carers will also be involved in making decisions as to where these funds will be allocated. Did Mr Hinkley say the extra £1m to be provided by the PCT (NHS) was solely for respite care? Why, who made this decision and why will they not identify themselves and engage in dialogue with carers? The specific terms and conditions for the use of this resource will be determined by the NHS organisations that have awarded it. There has been an understanding that it will link to previous NHS policy statements relating to 'breaks for carers'. This has not yet been specified. It is clear however that this is money that will specifically be used to support carers. Little or no transparency around carers’ break money in past and how it was spent. How can you ensure this won't be repeated and that carers will be consulted at an early stage? Carers' views were central to the development of the Carers Joint Commissioning Strategy and the commissioning of services to deliver the strategy. Carers have been involved in the tendering and award of contracts for carers' services and ongoing monitoring.

Scrutiny Review of Respite Provision Is the figure quoted on page 9 of the scrutiny review the whole budget for continuing health care or the allocated percentage for carers services? The figures on page 7 of the Scrutiny Review are estimates provided by Health. They are not the total figures for continuing health care. In scrutiny report on page 14, point 51, a social carer personal budget is mentioned. Is this referring to the personal budget or direct payment? It refers to the one-off payment known as Carer's Personal Budget. Who did the Scrutiny Committee ESCC consult with? A full list of consultations, sources of evidence and witnesses is published at the end of the Scrutiny Review of Respite Provision. You can get further details of the report from the County Council's website http://www.eastsussex.gov.uk/NR/rdonlyres/54F2C3A0-9D264829-832D-17D5D0DE3AEC/0/respitefinalreport.pdf Appendix 3 Page 5

Scrutiny committee need to ensure that effective and understandable liaison and co-ordination mechanisms exist with the NHS as at present the NHS (in the form of the PCTs and NHS Sussex) 'run a mile' from any liaison on carers issues. EXAMPLE I wrote in October to NHS Sussex asking to liaise with someone (anyone) in the NHS with management/budget responsibility for carers’ issues (I wished to speak about the lessons of the recent Dept of Health funded carers demonstrator site where I had been on the project's steering group).NHS Sussex wrote to me indicating that responsibility for ALL carers’ funding rested with the 'Joint Commissioner' - who would separately write to me. I still await a response. My main concern is not this specific issue but the fact that NHS Sussex and the PCTs abdicate all responsibilities for carers issue. This is not right. A joint commissioner provides the lead for carers in East Sussex. In the Scrutiny review - on page 18, item 61, regarding the Carers Assessment project in Hastings - could you provide some more information on the 'LEAN' Project? Lean Thinking is an improvement philosophy, a management culture and a set of 'tools'. It focuses on services from the customer point of view (for example, a service user or carer), improving speed, reducing waste, eliminating duplication and delivering improved customer value. A wide variety of staff from all service areas were involved in designing a new 'Lean' way of working, which was tested in a prototype in Hastings and Rother from 16 May to 5 August 2011. Social Care Direct, Assessment and Care Management, Occupational Therapy and Sensory Services, Finance and Business Information, and the Service Placement Team, were all involved in the prototype, and the results of this have informed the development of the proposed new way of working for Adult Social Care.

General Questions Mr Hinkley indicated that 'work was ongoing' on the issues raised by getting info to carers vis-a-vis the NHS. Why then did he not mention the lessons of the demonstrator site work? Does he not know about this work? Why then if 'work is on-going' will not anyone liaise with carers - via Care for the Carers or the Carers Partnership Board - on this 'on-going' work? He specifically mentioned the Conquest and Eastbourne DGH re Carers' Liaison issues, yet his officers will not communicate with carers on this issue. The 'Better NHS Support for Carers' demonstrator site project was discontinued following a three-month extension. Whilst some valuable lessons were learned through this project, there was not a sufficient evidence base to justify continuing with it. What improvements can be made in communication between Adult Social Care, Mental Health Services and Dementia Services? Responsibility for Carers’ Assessments seems to fall between services. Access to carers’ assessments and support services for carers can be offered by either health or social care staff working in the mental health services. Both organisations are committed to supporting carers and ensuring good communication between staff. For people caring for someone with dementia, the carers’ breaks service offers carers assessment and support services. This service is managed within Adult Social Care, working closely with both health and social care staff. Managers from both organisations are involved in carers' forums to identify problems and improve communication and access to support for carers.

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I don't really know what CRESS is about - I have it, but I'm unclear about when, why or how to use it. The ASC worker wasn't clear. The assessor would have discussed CRESS when you had your carer's assessment. We understand that there is often a lot of information to take in and so a Frequently Asked Questions sheet is sent with your CRESS card. A further copy can be sent on request. CRESS aims to give carers peace of mind that the person they care for would be supported in their own home should the carer be temporarily unable to provide care due to an emergency. When you register for CRESS you are sent a card which has a 24 hour telephone number and unique reference number on it. If you were to experience an emergency that prevents you from caring, you or someone or your behalf can call the telephone number on the card and alternative care can be put in place. This might be by contacting other relatives or by providing home-based care for up to 48 hours (72 hours if over a weekend) while longer term care is arranged. If there is no alternative, residential respite may be provided. Information on CRESS is available on the ASC website and also in the carer's information booklet 'Do you look after someone?' Mr Hinkley spoke greatly about money being 'transparent'. Transparency and real involvement in making budget deployment decisions is not the impression I have gained exists in the discussions I have had with EVERY member of the Carers Partnership Board. The needs assessment will precede any discussions relating to the deployment of funds. Our experience of ESCC finance team is: unhelpful, inefficient and at times very abrupt/rude. Please can action be taken to address this? We are disappointed that this has been your experience. Our financial assessment staff rarely receive negative feedback regarding the service they provide. The team's aim is to provide a quality service that seeks to support not only the people in need of a service but the household, by maximising benefit take-up as part of the financial assessment process. We appreciate that sometimes the outcome of assessments is a cause for concern, and this can be a difficult conversation. We would like to have the details of any negative experiences to enable us to address this further. Please explain how carers will be 'enabled to fulfil their education and employment potential'. The Work and Families Act 2007 gave carers the statutory right to ask their employer for flexible working. Most working carers also have the following rights: the right to time off in an emergency; the right not to be discriminated against or harassed (under the Equalities Act) and the right to parental leave if you have a child. If you want to combine your caring responsibilities with paid work, or return to work when your caring responsibilities stop, Jobcentre Plus can provide advice and support. You can get details of how to contact Jobcentre Plus from the local carers' centre Care for the Carers, or from Adult Social Care by contacting Social Care Direct. The Carers Personal Budget can be used to support carers to access educational opportunities and to enable carers to have a life outside their caring responsibilities. When we first became carers we didn't know what to do or who to go to. Our GP did not know anything; they need more awareness â&#x20AC;Ś what is being done about that? Research shows that carers look to their GP as the first port of call for help and support. We have campaigned many times to raise awareness of carers with GPs and will continue to work at this. Carers UK, together with the Royal College of GPs and the Princess Royal Trust for Carers, has been awarded funding from the Department of Health to improve GP support for carers. Appendix 3 Page 7

Why is the information regarding carers personal budget not posted on the internet as well as the intranet. There is information on Carers Personal Budget on the ESCC website. This includes details on what a Carers Personal Budget can be used for; who is eligible and what we take in to consideration when deciding on the amount of Carers Personal Budget. This information is also available in the information booklet â&#x20AC;&#x2DC;Do you look after someone?â&#x20AC;&#x2122;The ESCC intranet holds guidance and operational instructions for ASC staff. Information on the services we provide to carers is available on the ASC website http://www.eastsussex.gov.uk/socialcare/carers/financial/personalbudget.htm 'Looking after someone (carers)'. Impact of losing Carers Allowance at 60 - carers still have to care! New respite changes will have a huge impact on some families - charges will be made on cared for person which will impact on carers own income. Carers and the vulnerable people we care for are some of the most poorest in the country already suffering from fuel poverty etc. When the new policy was presented to the lead member there were timescales - a community engagement process was to be undertaken with carers led by ASC between Oct to Dec 2011. The Carersâ&#x20AC;&#x2122; Commissioning Manager had left by then. We were never involved in this engagement process. Did it happen? Why weren't carers known to ASC included? All carers receiving the home-based respite service were contacted and provided with information about the changes. As part of the financial assessment that will be undertaken for the cared-for person, there will be a review of benefits to ensure that the cared-for person is able to claim their full entitlement. Information to carers regarding support. Are personnel encouraged to inform of services bearing in mind the financial constraints? When you contact us we will ask you and the person you care for about your needs and any support you are getting already. This assessment helps us to understand things from your point of view, and agree on how best to meet your needs. If you qualify for support from us, during the assessment we will discuss with you and the person you care for what type of support and/or services would best meet your needs. Information on the services we provide to carers is available on the ASC website, 'Looking after someone (carers)', and also in the information booklet 'Do you look after someone?' Day Care Centres - a number have been taken away. Can the County Council look at alternatives out of county? Partnership working? In line with personalisation and people having increased choice in how they receive services, more people are choosing personal budgets to access a range of day opportunities. These could include anything from paying a support worker to enable trips out, for example to the theatre, or attending voluntary-run groups and activities in their local communities. East Sussex is working together with the voluntary and independent sector, with more organisations using existing County Council day centres to create vibrant community hubs and promote a range of activities taking place in them. Residential accommodation costs and expertise? Providers should be considering basic minimum wages. How can you get good specialized services if staff only paid basic minimum wage? The Care Quality Commission is the independent regulator of health and social care in England. You can access inspection reports on all registered care home providers to find out if all the government standards on quality and safety are being met. We can provide you with information and advice about choosing a home. Appendix 3 Page 8

Appears to be low take up of CRESS card, why? 146 issued Oct-Dec 11 The number of carers registered with CRESS at the end of January 2012 is 3,344. An average of 64 carers registers each month. What resources are being made for people with autism? The specialized care involved in dealing with people with autism is to properly support carers of people with autism. There must be a carerâ&#x20AC;&#x2122;s partnership board in line with co-operation with carers promoted by ESCC. When Keith talked about the impact of this on carers, I would like to know what is being put in place to support people with Autism - we need an Autism Partnership Board. Work is underway to respond to recent national policy on autism. There will be a project manager starting in April to specifically focus on autism. Initially, this will be for six months and the project will look at the key issues and make recommendations for the future in line with the National Autism Strategy. Part of this work will be to work with people with autism and their families to ensure that there are effective support services in East Sussex.

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