EAST SUSSEX CARERS’ FORUM 20th October 2010 The second public meeting of the East Sussex Carers’ Forum took place on 20th October at The Kings Centre in Eastbourne, to provide information to carers about respite care, and to find out carers’ views on the provision in East Sussex. The event was well attended by 101 carers and their guests (85 carers, 16 of whom also brought the person they care for), as well as 37 professionals from Care for the Carers (CftC), East Sussex County Council (ESCC), and partner organisations who provide respite care. The meeting was chaired by Roger Strange-Burlong (Carer and Chair) and the speakers were Liz Fenton (Chief Executive, CftC) and Debbie Charman (Commissioning Manager for Carers’ Services, Adult Social Care, ESCC). Crossroads, the Association of Carers, A1 Quality Homecare, Candlelight, Plan Personnel and Sound Architect provided information stands. The event began with an update on progress made since the last Carers Forum, which took place in June. CftC had produced a report presenting the points that carers had made, and this had been circulated to everyone who had attended, and to key decision-makers. The report raised questions about Personalisation, so the core members of the forum asked Adult Social Care to produce a paper to answer these questions. CftC will be publishing more information in the next edition of CareLine Magazine and ESCC will be producing carer specific information in the New Year. (Any carers interested in being part of the group developing this can find out more by contacting Lynne Thomas at ESCC on 01273 335 681). A key outcome of the June meeting was the recommendation that East Sussex should develop a Carers’ Charter – to encourage and support organisations to be ‘carer friendly’, and enable carers to monitor this. Liz reported that CftC had been working on developing the Charter, and was pleased to feed back that the Carers Partnership Board had agreed to take this forward. On a less positive note, the Primary Care Trusts (PCTs) had been unable to attend the meeting, but provided a statement to update the Forum on the use of the £150K allocated to local PCTs from 2009 to 2011 for carers’ respite. This issue was highlighted at the last meeting, when the PCTs had committed to use the money for carers’ respite, and to do so in a more transparent manner this year. Liz read out the statement, which stated that this money may now not be used for carers due to current financial constraints. Disappointment was echoed by all – CftC will continue to highlight this vital issue and will pass on carers’ views to the PCTs. Consultation methodology Debbie gave an overview of respite provision in East Sussex, and took questions from the floor. Points raised included the importance of a swift response from Social Care Direct – one carer had experienced a three week delay. Carers also queried whether they are required to contribute to respite care costs – whilst this
is currently not the case, it cannot be guaranteed for the future. The importance of Day Centres was also highlighted, and the impact on carers if they close. Following the presentation there were table discussions during which carers considered: • Their experience of respite care • The barriers for carers accessing respite • How their ideal respite would look • The information they would require to make informed choices about respite Facilitators collated all the comments onto a ‘Graffiti Wall’, which created a powerful visual display of the discussions. The themes are summarised in this report and all comments have been recorded in a separate document (attached). What is your experience of respite care? ‘When it works well it can be brilliant’ The key themes that came out from this discussion were; the need for a good social worker, the impact of the closure of residential units, the importance of tailoring the respite to the needs of the cared for person, and to recognise that ‘there are still caring responsibilities for people who are receiving residential care’. ‘Extra time – 3 hrs a week for shopping and no time for anything else’. There was a split between the wish for respite at home and the desire to get away. Likewise, there was division between carers who want respite with the person they care for and those who do not. ‘Daughter (25) offered respite in EMI home. Please make respite appropriate for individuals’. What are the barriers to carers accessing respite? ‘The concerns and emotions involved in respite need to be recognised when offering respite, alongside the material issues e.g. issues about transport’ The key barriers carers highlighted included not knowing how to access respite care ; needing to wait for an assessment, support, transport, cost and means testing; and the emotional issues surrounding respite: ‘I want respite but have never had respite (cared for says no)’. ‘no one acknowledges the carers as an ‘expert’ on the person they love’ ‘It’s easier not to..’
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What would your ideal respite look like? ‘My ideal break would be somewhere where I could trust he was being looked after and not have to go in twice a day to make sure that he has food, drink and is clean’. In the main, carers answered this question with single words: • affordable, activities, clean, communication, consistent, flexible, free, overnight planned, regular, reliable, stimulation, transparency and also • personal choice, quality care, easy to access, same sex carers, good clear information, beyond office hours ‘I want a respite place to go with my wife – she could get the care and I can relax. We’ve been married for 60 years and don’t want to be apart’. What information do carers need to make informed choices about respite? ‘A good social worker who communicates well’ Generally carers requested transparent, accessible, accurate available and reliable information and, the following specific information was requested; • the availability of respite, its cost and available funding, • how to access respite and the waiting list, • details of the eligibility criteria, • information on the progress of an assessment, • consistent information, and • what are the choices. ‘We don’t know what we don’t know’ Key issues The table discussions showed that there were particular issues around respite for Parent Carers, and highlighted the important role that GPs play. Parent carers identified that information on the respite services that they can access is not freely available, and that there is no real assessment of their needs. A particular concern was the lack of respite care available for children with challenging behaviour, that there is not enough respite available., and that there is even less in school holidays. In an ideal world, parent carers would like to be able to access respite that is flexible and meets the needs of the whole family. ‘If parents are unsupported, there is a greater chance that young people (siblings) will become young carers’. Some carers felt that the GP had a role in supporting carers by making a referral
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to Social Services and to be aware of respite options. They stressed the importance of being able to take breaks early on, before things reach crisis point. ‘The GP alternative to lack of respite … is an offer of anti-depressants’. Summary of key themes Key themes that came through in discussions and on the ‘Graffiti Wall’ included: • The need for accurate and timely information • Respite care needs to be appropriate to people’s care needs. Carers need to feel that they can trust the care provider. • Money – Carers called for more transparency about the cost of care; they often do not try to access respite because they feel they won’t be able to afford it. • Prevention – ‘Why do we have to wait till things fall apart before we can access respite?’ • Carers Assessments – should be face-to-face and relevant. • Parent carers – There are particular issues preventing Parent Carers from accessing respite. They explained that information on respite available to families is not freely accessible, and felt that there is no real assessment of their needs. Although they spoke of good services, there is not enough respite available, especially in the school holidays and for children with challenging behaviour. They called for respite to be flexible and meet the needs of the whole family. Trust is vital, and this is developed by having an ongoing relationship with the respite provider – “you can’t leave your child with just anyone”. Next steps CftC will take up any questions raised by this report, and will publish the answers in CareLine magazine. To ensure that the views carers expressed are heard, this report will be circulated to: • All carers who attended • All core members of the Carers Forum, including member organisations • All participating organisations, and any other statutory organisations with a responsibility for supporting carers The next public meeting of the Carers Forum will take place on Thursday 10th March [please note that the date has changed, and replaces any dates previously announced] – please contact Care for the Carers on 01323 738 390 if you are a carer and would like to attend.
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Appendix A
TRANSCRIPT OF CARERS’ COMMENTS FROM GRAFFITI BOARD WHAT IS YOUR EXPERIENCE OF RESPITE CARE? General Comments Received • If care is provided at home instead of by the state the carer should be properly supported. • Transition process difficult – access via GPs or hospital. • Social Services. Difficult to speak to the same person, don’t return my calls, inconsistent information (& sometimes incorrect). • ESCC Adult Social Care eligibility criteria is generic and does not specifically relate/apply to carers. • Had to insist on extra sitting via Carers Assessment. • Can’t book care homes a long time in advance (they want long-term residents). • Been waiting a long time for a Carers Assessment to access a Carers Personal Budget. to take a break – been waiting 4 months at least – was told it was a low priority.. • Blurring of definition between care for service user and respite for carer. • If a cared for person cannot afford to pay for respite, then carers need to. Respite Service • When it works well it can be brilliant. • Homefield Place – very good. • Pleased with respite X3 • Chailey Heritage is wonderful • Venue did not meet cared for’s needs. • Daughters (25) offered respite in EMI home. Please make respite appropriate for individuals. • 20 yr old goes into respite but surrounded by older people. • Harvard Road – Closing. Worried about future. • My husband loved attending day centre – he has lost his social contact with friends he made and the staff. We have both lost out. • Wife 24/7 carer no respite. This area –St. Anthony’s good, very upset. Paid privately. ASC waited since June. • Day centres closing down so no opportunities. • Hit and miss – depends how good your social worker is! • Depends on Social worker • ‘Care in the Community’ does not work for Alzheimers victims. • Wants respite but unsure how to start getting it. • Need to know where to start – who to call, who to talk to. Very little awareness in GP surgeries – do not know what to do. New carers often very isolated. • “I wanted my husband to go to a day centre. I was told I would be better to employ ‘one of my own kind’. I felt hurt and disappointed and didn’t pursue it.” [comment passed on to be included at forum byan Asian carer who could not attend] • Private respite providers = not happy to take short term respite booking.
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Contacted ASC in June and still waiting for an Assessment (Eastbourne area). Big differences in experience of accessing assessment and respite. Problems getting sitting/respite while I attend appointments (medical) Allocated to one person then other different agencies. Depends on Social worker Don’t make assumptions about what we need – ask us and listen, not just as a token gesture. Emotional support is a form of respite. A carer can get respite if they have peace of mind. My wife hasn’t had a week off in 5 years. No experience of respite in ESCC because not had any.
Residential Respite • Residential: Good and bad experiences. • Cared for needs need to be made welcomed. • Continuity of staffing • When she was at St. Anthony’s I still went to see her. I went in twice a day. • There are still caring responsibilities for people who are receiving residential care. • Concern about closure of Gilda Crescent and St.Anthony’s Court and other residential units. Insufficient residential respite. • Insufficient residential respite. Sorrell Drive is full. Respite needed for family including siblings. [(Parent Carer). Home Based Respite • Told I can’t get it in East Sussex • Has sitting service – works ok. • Not relaxing for carer to have people in the home. Day centre is better. • Don’t always want at home respite. Want to do things at home without cared for. Respite and Direct Payments • Now I have Direct Payments since April and have to pay a top up for my sitting service (Crossroads). Why? • Direct payments should allow carers to choose their ideal respite – BUT options must be available for all needs. • Why is Personal Budget dropping? Important to get break. Confusion when due and accessing personal budgets. • Issues getting Direct Payments. Granted but delays in getting. • Delays in payment. Granted in June, not paid until December. Lost 6 months grant. • Universal use of the generic contact for all funded home care and Carers • Respite – some via cared for’s Direct Payment. • Experience: Replacements for Directly Provided Services are not working well and the process for access to services (Personal Budget) is just too complicated. • Direct Payments have been useful but CVs weren’t filtered and were out of date. Standard approach by A4E not person centred. • Direct Payments good – but sent standard CVs by A4E that were months out of date so not helpful.
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Direct payments work well but require a great deal of time and expertise. Parent had to give up work. Can you employ a member of your family? (Parent carers)
Emergency/ Unplanned Respite • CRESS is very reassuring • Information on Emergency Respite and how to access. • Who cares in an ‘Alzheimers Emergency’ on Sunday Midnight? • Most are not prepared for emergencies, if carer is taken ill and no arrangements are made for the cared. This is frightening to say the least!! • Carers and the people they care for are most worried about what would happen in an emergency. • Emergency Respite needed.
Respite and Parent Carers • • • • • • • •
Children’s Services and Housing all in one. Link Fostering Scheme and Crossroads Kids are good but not enough. Respite for help in school holidays. Insufficient pre-school services. Lack of respite during school holidays. If parents are unsupported, there is a greater chance that young people (siblings) will become young carers. Carers Assessment to be accessed through paediatric service. Should include ‘think family’ approach as impact on siblings can be profound. Communication with carers about the progress of their assessment. Information freely available on what parent carers can access. Parents report they have to fight for everything
Respite and the Role of GPs • • •
GPs need to refer carers to Social Services. GPs need to be better informed about respite options. The GP alternative to lack of respite (or other service) is an offer of antidepressants.
WHAT ARE THE BARRIERS TO CARES ACCESSING RESPITE? • I don’t just want ‘someone’ – I want ‘someone special’! • Not knowing how to get services •
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Finances. Don’t know who to contact. What is the process? Too proud to ask for help. Cared for person doesn’t want people to interfere. Means testing will put a lot of carers off. High cost of respite care (means testing!!!) Knowing the right thing to say and the right forms to fill in. If something is not working there needs to be a simple way of saying so and confidence that something will be done. If someone has a dual diagnosis e.g. Dementia and physical disability – impossible to access suitable respite to meet needs. Really difficult to access respite if someone has a long term illness like me or condition that fluctuates.
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Day care = only weekdays not weekends. Cared for = needs to be encouraged to eat. No one acknowledges the carers as an ‘expert’ on the person they love. Lack of confidence that carers knowledge of care/medication will be acknowledged and respected. Self funders are invisible to ADSC – no help Care homes don’t want to book respite a long time in advance so self-funding carers can’t book ahead. Respite dates = not confirmed / venue, etc. until a few days before respite booked. Waiting on assessment to get a respite service (backlog of assessments) Waiting for Decisions. Granting but not getting money. Long waiting time between asking Social Services and contact with a social worker. Assessors don’t have the right information (when working with carers and services users). Needs to be more flexible. Feel ESCC Don’t want you to know what’s on offer – you don’t know what to ask for. Lack of assessment – waiting 4 months. Lack of one to one face to face contact. Social workers very scarce – not given chance to speak to one – always recorded message and they never get back. No problem with cared for in the main. No accessible transport. Being kept waiting without feedback. Really difficult to contact services: phone not answered; promised contact not made. Cannot rely on response. Having to pay for transport to and from respite place Transport. Taxi = cared for needs to be accompanied by a carer either paid or family carer. Cared for accessing vehicles. Carers do end up paying by default – really hard to manage financially. Cost. How to get more respite. Cancelled at last moment. People in your home doesn’t feel right. Cost. Support. How to access? Waiting lists – too long. Get to know staff and then they leave. Too many changes to rules. Everything is a fight. Too expensive. Difficult to arrange at short notice. Not enough choice. Cared for needs to feel they are on holiday as well. Felt Guilty – emotional for carer and cared for, I want respite but have never had respite (cared for says no). Respite generally works well but cared for may not want to go away. Felt guilty – emotional for carer and cared for. What to do if ‘cared for’ does not recognise the carer’s stress and refuses services? Cared for person says no: 1. Maybe doesn’t want to try; 2. others have one bad experience and then say no. Hard to balance carer and card for’s wishes. No choice if cared for refuses respite. Carers need support to deal with that. My daughter wouldn’t want somebody else. Carers’ guilt. ‘I can manage.’ I’m not a carer’. It’s easier not to.
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WHAT WOULD YOUR IDEAL RESPITE LOOK LIKE? •
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Ideal Respite? No mental space to think about what I would like so can’t really say. I want a respite place to go with my wife – she could get the care and I can relax. We’ve been married for 60 years and don’t want to be apart. Respite together. Take a holiday. Ideal Respite: Need to feel sure that cared for is in a place where her wishes and needs are respected. (I would like a smoking hotel!). Ideal: Greenwood is friendly. Daughter going away to mix with people of her age/peers. Reduced isolation. Wish list. Matching the right group of people (age/ability, etc). Continuity of Care. More short breaks. My ideal break would be somewhere where I could trust he was being looked after and not have to go in twice a day to make sure that he has food, drink and is clean. Suitability of respite setting (age, culturally, location geographically) Suitable for persons needs. So carer feels confident to leave cared for person to go away. Knowing someone understands my cared for’s condition, not just doing their job. Residential care to feel like a home not an institution. Clean! Full care from someone they know. So can go on a holiday with peace of mind. To be on my own with my husband and holiday To meet the needs of the moment from a personal viewpoint! If ESCC wish list worked – their version. This would be what ideal respite would look like…but they can’t meet it! Good social worker who communicates well. Like to look at place. Not being cancelled. To see what the respite looks like! To have contact with the carer and cared for person before deciding. Would respite provider manage medication. No ping-ponging with information. Flexible. Personal choice. Quality care. Easy to access. Reliable. Same sex carers. Transparency. Good clear information. Communication. Free! Consistent. Flexibility! Beyond office hours! Overnight! Good care staff – some too business like and indifferent. Consistent, planned, regular Affordable for real people – carers do make financial contributions – many carers in financial hardship. Activities / stimulation for people whilst in respite. Extra time – 3 hrs a week for shopping and no time for anything else. Weekly help is useful & someone to build relationship with (& trained) 1 week away , without cared for, every 6 months – but chance to meet other carers in similar situation. I would like one whole day off a week and one week per year – and I don’t think that’s asking very much. Would like one whole day once a month and once a year a whole week. Twice yearly – a week away in a comfy place.
How would you spend your Respite? • You take control of your own life!
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Only been doing this for 4 weeks after 30 years of caring. At present I do nothing but sit and worry if my daughter is OK – I may get used to it!! When I do – I shall probably do jobs in the house that I can’t normally do. To catch up on personal shopping, etc. Do odd jobs around the house. Seeing family members. Time to myself. Break away. Meeting with friends. I would go on a painting holiday with cared for if respite was available Business meetings., Training days. Holidays. Business meetings. Access (respite) three days a month. Once a year (a holiday, when I leave our home to go away). Other days (each month) – revamp/decorate our home, gardening; attend disability committees throughout East Sussex. Have a lie in – sleep better for a few days (usually have disturbed nights). Go swimming. Visit family and friends Phone family and friends. Go to the theatre/cinema.
WHAT INFORMATION DO CARERS NEED TO MAKE INFORMED CHOICES ABOUT RESPITE? •
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Communication – big issue. We don’t know what we don’t know. Is available online – CftC, ESCC, PRTC, etc. Carers need to acquire skills and computers to access this. Often learn most by talking to other carers – need more opportunities like this. A carers’ centre would provide a focal point for carer information and sharing information. Carers talking to experienced carers – meeting with other carers Carers need access to eligibility criteria. Eligibility criteria Could Social Service state which care homes they recommend for respite care, and assist paying for as there are no Sussex County Council Centres now. Cost. How to arrange it. How will it work? What are the choices? Carers need information on how to access respite care, i.e. whom to contact to put process into place. Also information about eligibility, costs, etc.Accessible information. Reliable information. Eligibility – how do you get it? Confidence that they will be listened to. Social Services don’t tell us which care home they will pay for – we have to ask, then they tell us. It’s a guessing game. Need to know the options – Carers Assessments posted – no help whatsoever – need to talk about respite in person. More information about respite providers, homes, etc (even a list would help). Need detailed info about care homes that actually do respite Need consistent info offered to us – not a guessing game. Carers need: A simple menu of types of respite. Who are approved providers? How can it be funded? Due to frequent changes to criteria and laws concerning carers’ rights, a lot of different information is given by different Social Services staff. Staff should get the information and make sure it is correct before giving this out to service users. Professionals either don’t know or aren’t up-to-date. Need to be trained or know where to refer. All professionals should be carer aware and know who to refer us to for help.
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Need to know information on: venue / facilities / activities at venue, catering / staff, transport / outings for residents. Accurate information. Cost/funding. Availability. Waiting time. Transparency. Contact phone number to talk to would be most helpful. All information in black and white, clear and concise, with all options and costs that need to be met. Future planning information and guidelines as to what will be possible. Information overload all coming at the same time – need to be timely and appropriate.
QUESTIONS • • • • •
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Why is there no Carers Allowance after 60/65? We are still working carers. Why change terminology of grants, benefits? Confusing. Confused about how I can get a sitting service – do I have to pay? What criteria do Social Services use for recommending care agencies and once in place how often is the service checked? Carers are already paying for respite. Bills go to Serco, Uckfield. Who gets it for free? Yes…why not me? How is funding calculated? Debbie Charman, “No one is paying for respite” People cannot afford to pay for respite. Lack of communication, sloppy admin. Can’t fault Crossroad Carer but: pay more for it, pay for taxis. What about those who can’t afford it? Earlier this year the County Councillors said how much they value carers – yet it is evident from today that East Sussex still do not provide enough respite for carers to have them continue to care – how much are we really valued by East Sussex? Why is Sussex lower funding for care homes than Kent? Have Social Workers been replaced by OTs?
HAVE YOUR SAY • • • • • • • • • • •
Carers save the NHS millions. We should be entitled to a break at least twice a year away from caring to recharge the batteries. Top up fees. Who pays when you can’t and there are only those places available? Charging for carers services. We are on the slippery slope. Adult Social Care staff do not accept carers as experts in the person they care for. When is a carer not a carer? ESCC say when the person you care for moves into residential, even if on average for a year you care for over 40 hours each week. Specialist services for people on the autistic spectrum. Implementation of the Autism Act will be needed. ESCC record is poor. Carers looking after themselves. You have a responsibility to keep well yourself. Depression. Anxiety. Not being heard Through caring I now feel I need caring for! Not believed, misunderstood. We will not be shunned
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FEEDBACK ABOUT CARE FOR THE CARERS • • • • •
Just because I don’t shout and scream doesn’t mean I don’t need help – good to have CftC to help me be listened to. No one at Adult Social Care could advise me. CftC were brilliant. Self funder. A local carers’ centre that carers can go to for advice/contact with other carers. Critical to have people like CftC to support and signpost – could not get sensible answers or help from Adult Social Care. CftC were the only ones who could support me consistently through the maze of information. More of the same.
Involvement & Representation: Information & Advice: Groups & Events:
Individual Support:
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