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EAST SUSSEX CARERS’ FORUM REPORT 10.03.11

The third East Sussex Carers Forum was held on Thursday 10th March 2011 from 10.30 am until 2.30 pm at the Uckfield Civic Centre, and was attended by 63 carers. Carers and Care for the Carers staff participated in two sessions; the first focused on objectives for carers’ services (what carers would like to see achieved and what the services would look like) whilst the second considered issues raised by the East Sussex County Council Prospectus for Services. Introduction and Update The forum began with The Panel introducing themselves: Roger Strange-Burlong (Chair, Carers’ Forum); Liz Fenton (Chief Executive, Care for the Carers); Barry Atkins (Head of Strategic Commissioning at Adult Social Care, ESCC and Chair of the Carers’ Partnership Board); Debbie Charman, (Strategic Commissioning Manager for Carers, Adult Social Care, ESCC). Roger provided some feedback on respite-related issues following the last forum, confirming that the report from that meeting had been circulated to key decision makers and to everybody involved with the forum. Roger also stated that the last forum highlighted the need for better support for parent carers of children - who seemed to fall into a policy gap between Adult Services and Children’s’ Services. The Prospectus for Services that will be commissioned from the voluntary sector now includes dedicated funds for supporting parent carers. Consultation Process Barry Atkins gave a short presentation titled ‘Funding for Carer Services in East Sussex’ (attached at Appendix 1) saying that there was a need to save £37million across the council over the next 3 to 4 years. The key spending plans of the Local Joint Strategy for Carer Services for 2011/12 include respite breaks, wellbeing and, respect and involvement. £872,500 was available to support the voluntary sector in providing services to carers1

Reply from Barry A: Barry confirmed he would follow this up saying there is greater demand than resources, so an individual’s grant may be reduced. There is no guarantee each year’s grant will be the

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First Session of Table Discussions Following the presentation carers were involved in the first round of table discussions. Facilitators sat at each table and provided feedback from these discussions to the Forum. Facilitators also collected carers ‘post it’ comments and themed them on the ‘graffiti tables’ for future reference. The first table discussion focused on ‘What carers would like to see achieved and what the services would look like.’ The key issues that arose were: ‘How secure is funding for carers? How long will it remain secure?’ Response from Barry A: felt unable to give any guarantees on funding beyond the coming year due to the uncertainty of local authority funding generally. Carers grant is provided by central Government, but is not ring-fenced, meaning that it could be used for any Social Care objectives. Funding for 2011 – 12 was confirmed as the same level as 2010 -11. The Carers’ Grant has been cut by 50%. Why is this, if Government so committed to carers? Debbie C: This question relates to the Carers Personal Budget – an amount of money that the local authority makes available to individual carers in response to need – as determined by the Carers Assessment. Although the average level of individual grants may not be as high as previous years, the overall amount made available has been maintained. Debbie apologised if this had not been made clear by Social Care staff – steps are being taken to ensure they understand the situation. One carer questioned why her allowance had been halved this year when her circumstances had not changed. Another carer felt Debbie was ‘giving them a load of flannel’. Reply from Debbie C: this was not the case and it was certainly not her intention. Debbie offered to speak with the carers concerned after the meeting.

1 Please note that this figure is now confirmed

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same and unfortunately in some cases there will be reductions. There should not be an expectation of a yearly sum. Liz F: commented that carers are receiving differing responses from Adult Social Care and the message is not getting through. It is essential that carers are given priority consideration and the correct information. ‘Carers can buy respite services if they have been given a grant but at the moment carers need to use agencies from the providers list. Carers could buy that service from direct payments which is cheaper? This option is currently not available – why?’ Response from Debbie Charman (Adult Social Care, ESCC): whilst home based respite is available it is acknowledged that some issues can become complicated such as employment. ESCC is developing a system whereby the cared for can have a ‘PA’. ‘Appropriate respite for people with severe learning disabilities seems dependent on where you live in the county. There is little consistent social work involvement so it can be difficult to build relationship/partnership in respite care’. Response from Barry A: expressed his concern that a key objective is not being fulfilled and stated that he was unaware of inconsistencies in services across the county, but this will be looked into. Respite delivery is a challenge and it will be peoples’ experiences, and observations that will help shape future services. There is a shift from understanding respite being simply residential care to understanding that respite may be short or long term, in the home or outside the home. If it is not working we need to identify why it is not. Through individual budgets, ESCC is trying to return to taking a holistic view of needs, the role of carers and the caring situation, with the flexibility to create personalized ways of meeting needs.

‘Flexible respite for when carers are hospitalised for low level procedures that can be planned – could be day surgery – CRESS not applicable in these cases if ‘planned’ and not emergency’

‘Carers felt that there should be more continuity of care between Adult Social Care, Mental Health and access to CRESS’. Response from Debbie C: agreed that there was some uncertainty amongst some Mental Health staff as to the funding issues regarding CRESS and agreed that the involvement of carers must be recognised by the Adult Social Care and Mental Health teams. ‘Carers are not being consulted regarding new developments. Why are carers not always treated as equal partners and there needs to be improvements in the system and communication?’ Response from Barry Atkins: apologised if this is not currently happening. Carers should highlight incidences of this either through the complaints process or individuals. Liz Fenton (Chief Executive, Care for the Carers): confirmed the commitment within Care for the Carers (CftC) to ensure carers’ voices are heard. Carer awareness is an element in the Prospectus and as such it is important that CftC maintains a representational function. ‘There needs to be an equal partnership with GPs and other health professionals – not just Adult Social Care’. Response from Liz F: CftC has been running a special carers service (funded by the Department of Health) working with East Sussex GPs and General Hospitals. The project aims to help health services be more aware of carers, their needs and referring them for support and information. CftC will be reporting their findings in the next few months and although this is a major priority there is concern about whether continuation funding will be available when the DH money runs out in April.

‘When are Adult Social Care personnel going to start treating carers as equal partners? This is especially relevant to middle management & senior management’.

‘Carers find it difficult to find answers and access information. Crossroads is disappearing, jobs disappearing for people with mental health problems and respite is reduced. It feels fragile and complicated’.

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Response from Barry A: agreed that this was a lot of change in the system. There is a long standing programme between Adult Social Care and ESCC to co-ordinate information in one place. The Joint Access and Information Project tries to improve the information and access to services. Liz F: confirmed it was a balancing act to gather all the necessary information and in one place. We need to be aware that it is crucial that all information is held in one place for carers to access – ideally a Carers Centre for all carers in East Sussex. ‘What guarantees are there in manpower and funding for the support and care for the people we care for, when we die?’ Response from Barry A: there are no guarantees in the way society cares for people but the provision of care will change. More of the same is not an option as need will eventually outstrip resources. We must make better use of the money we have and make the Prospectus good value.

Second Session of Table Discussions In the second round of table discussions carers were asked to consider the following questions:

1. How can we reach carers earlier? 2. What kind of information, advice and support do carers need? 3. How can we meet the needs of parent carers? 4. What is the best way of making carers’ services available outside of office hours?

The Panel was not available to comment. The facilitators provided feed back on the issues raised. How can we reach carers earlier? Suggestions included:

• We need to raise awareness of CftC services through NHS and Adult Social Care. • A Carers Centre – bringing together a range of services for all carers across the County must be

maintained • The message should be publicised in local papers, post offices (TVs with repeated loop of

advertising), A&E Departments at both DGH & Conquest Hospitals, explore any other communities, GP surgeries, dentist surgeries, etc.

• Young Carers contacts in schools to publicise information to identify parent carers, grandparent carers etc.

• Education area offers wider field to access families in schools. • Reiterated importance of getting message out there of services available from CftC in schools,

pharmacies, podiatry clinics, dentists, doctors, etc.

‘in some cases you need to be desperate to get acknowledgement that you are a carer’

What kind of information, advice and support do carers need? ‘Carers need to know what they can expect and have the information about their rights, so that they

feel confident to ask or insist that they are involved. One primary organisation to anchor carer support would be good – information often inconsistent, irrelevant or not timely when randomly

distributed by lots of people – sometimes too much information can be confusing and unhelpful’.

‘Not everything is about Social Services for carers – local expert organisation who understands wider issues for carers e. g. finances, housing, work issues, etc’

What is the best way of making carers’ services available outside of office hours?

• Out of hours services should be offered as required – but evenings and weekends are not necessarily convenient for carers, even if they work. It is possible that out of hours services may take resources away from day time services, which are more valuable to the majority of carers.

Summary of Key Themes The key issues that came out of the table discussions and the ‘Graffiti Tables’ were:

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• Services for carers should include advocacy, befriending and counseling thereby promoting a sense of wellbeing.

• Concern about means testing for carers and a need to understand more about the eligibility criteria

• Carers needing to be treated as equal to the professionals • The need for a carers centre as a ‘one stop shop’ for information and support • Respite should offer more choice, flexibility and planning:

Close and Next Steps An announcement was made to the effect that Liz Fenton has been appointed the new Chief Executive of the Princess Royal Trust for Carers and would be leaving CftC at the end of April. Marie Casey (Deputy Chief Executive) would be taking over as CftC Acting Chief Executive on 1st May. Liz also asked for any carers who were interested in forming a group to assist her in developing our future funding bid to let her know and give her their contact details. Roger Strange-Burlong felt it there had been useful and helpful discussions and reminded everyone to write their views on the fluorescent post-it notes for the graffiti tables, if they had not already done so that as much feedback as possible could be obtained from the forum. ‘If we say nothing, then nothing will be done’. Roger Strange-Burlong confirmed that all the information collected would be included in a report. A copy of the report will be sent to all attending carers, key decision makers in NHS community and local government and other relevant voluntary services. The report will also be included in the next edition of Careline. Roger thanked everybody for attending.

The next public meeting of the Carers Forum will take place on Thursday 9th June at Ashburnham Place.

Please contact Care for the carers on 01323 738 390 if you are a carer and would like to attend.