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Report Carers Centre

Intro DataBridge is a short project exploring the use of data within the voluntary sector. We aim to understand more about the use of organisations own data, existing public datasets and potential of using open data. We also aim to contribute to the strategic development of data use within Brighton & Hove and believe there are discussions that are needed on the issue of datasharing within the VCS and with statutory partners. National context is one of increasing expectation of transparency of information about public services, provision of information to drive public choice and to ensure accountability. For the voluntary sector this will have implications both for those who provide public services and for those who wish to engage with local Partnership commissioners and funders. The Carers Centre for Brighton & Hove is a local charity supporting people with a caring responsibility. They have 20 full and part time staff, the majority of whom provide direct support to carers, and a similar number of volunteers. The Carers Centre has 3000 users, around half are self-referred, half referred by the council, other VCS and word of mouth. Summary of discussion Jo Ivens and Tom Smith met with Chris Lau, Centre Manager on 30 June. We asked a series of questions under the broad headings of: Background about organisation, collection and type of data Use of data for internal management purposes Use of data for strategic purposes Use of data for demonstrating need, demand and impact Identification of gaps in data, gaps in how using data What Open Data would be useful, what do you have that would be useful to others Voluntary sector-wide sharing and connecting What networking opportunities would be useful Staff skills The Carers Centre has 20 part time paid workers, all of whom collect data. They believe their staff skills are sound and pay attention to data entry quality and use. Data is collected on the 3,000 users at the needs assessment stage including contact details, initial assessment, referrals on and where to. At the case work

stage, more detailed information is collected on the conditions theyre caring for, age, relationship with cared for, ethnicity, sexuality, postcode. Demonstrating need, demand, impact Carers Centre make some use of their data compared to national datasets to look, for example, at the % of carers in national population (e.g. Census 2001 asked questions on whether people provided unpaid care, and these questions were repeated in the 2011 Census) compared to their data on local users. They also analysed users by neighbourhood (Super Output Area), comparing against demographic and socio-economic data such as deprivation levels. This helps understand need, as opposed to demand. Most of their analysis of need, demand and impact is based on softer intelligence from regular coffee mornings and the quarterly carers forum. Through this and direct support provided, they know that carers tend to focus on services for their cared-for person rather than support for themselves. They undertake some focus group work and follow up over the phone. Annual survey of all users is used to assess impact of the carer support provided. This is based on a postal survey direct to users at the address they are registered with, and also direct survey of users at coffee mornings on a particular date. When targeting promotion to areas through outreach worker and CVSF network, MIND, the Federation of Disabled People or the CAB they don't use much of their own data, but analyse national data by SOA area, focusing on known areas of deprivation. They also use categories of long term illness, e.g. cancer, dementia, disability, HIV and substance misuse, to identify where there are likely to be high numbers of carers. Internal use KPIs captured through database include number of new referrals, number of new cases, number of assessments, number of cases closed, ethnicity, age. Also look at quality of service, how many users feel more confident or more capable of providing care", were able to access broader support services. Project managers report details of case work and issues emerging to Centre Manager. Plus information is shared via weekly staff email, fortnightly team meetings and monthly staff meetings. Quarterly Board report using data of users, statistics, using PQASSO Carers Centre identified that they were not well developed in using data to improve their services, except via feedback / complaints which are acted on. Strategic use The Carers Centre works with council and joint commissioners. There has been an increase in the number of carers, they need a dialogue with the

Partnership about dealing with demand and use their figures to demonstrate changes. Carers centre would like GP info on carers although they believe that GPs dont routinely ask about an individual's caring responsibilities. GPs do refer patients to Carers Centre, but dont share routinely the number of carers. There is a strategic need to engage with GP commissioning and Carers Centre would like to be able to demonstrate the money saved by carers for hospitals, for example in preventing readmission. Gaps The level of need of carers is unclear in the Joint Strategic Needs Assessment 2011. It is challenging to know the full number of carers as it relies on selfidentification and estimates do not include those not asking for help. Carers are very important to the council as they prevent people bombarding council services with need. The Carer's Centre would like to be able to quantify savings to public services. Information on young carers was seen as a gap in knowledge, with a concern that there could be significant unidentified need across the city for this group. Open Data There was a great deal of information that Carers Centre felt would be useful although they were not sure of the specific datasets that would provide this information: What data on number of carers in mental health services, counselling, preventative level stage. (although mental health services assessment of what is a carer is different to social care). Numbers of carers recorded by GP, PCT, Hospitals, community nurses, VCS, Council including detail on housing, social care. Carers in supported accommodation/ extra care housing Those caring but not living with cared for person How carers support reduces readmissions hospital discharge/readmission e.g. Bristol work. Connexions data on Young People with a caring responsibility Schools info on Young People with a caring responsibility BME, LGBT, Gypsy/traveller groups there is very limited information about caring in these groups Government figures for Carers Allowance (a DWP benefit, with data currently published at LA level) number applied, number successful. Council funding for prevention rather than acute / complex needs at Tier 1 (to prevent getting to Tier 3) Childrens Trust shift from intensive to tier 1 or 2 groups including carers Mental health and Drug & Alcohol Teams general info on families, they know about caring responsibility but do they record it?

Sharing & networking The Carers Centre is involved in the network of CVSF, MIND, the Fed, the CAB, Patch, Amaze, and the Alzheimers Society locally. No current datasharing, but theyd be interested in sharing information on equalities data; carers needs and if they have similar issues; users and underrepresented groups. They felt that a network group on data could provide a single voice when dealing with the Partnership, to advocate and to get data from Partnership, but that a loose network with infrequent meetings is no use, it need leadership. Observations The Carers Centre collect lots of data from their users and members, much of which is qualitative feedback that is used to improve services. There is limited use of their own data to demonstrate need/demand/impact and limited use of external data. However, they do look at SOAs and known areas of deprivation. Policy and research input is mostly from external organisations such as CVSF or national Carers organisations. Recommendations from OCSI The benefit to the families and the city from the Carers Centre support is enormous and it would be good to make this clear to commissioners/ funders, e.g. in the Annual Report. The centre supports a large number of carers 800 in 2009/10 (from the 2010 Annual Report 1) with more than half of these providing more than 50 hours per week (based on the 2009 User Survey). A very rough finger-in-the-wind calculation suggests that the centre supports carers providing perhaps 1.8 million unpaid hours per year 2. This equates to 940 full-time carers (based on 37.5 hours/ week) or 11 million per year (based on current 5.93 minimum wage). A more robust calculation could use more accurate data on average hours of unpaid care provided (available directly from the survey data), and take into account other benefits provided by carers. Resources, data sources Finding data that is published by national government: The Data for neighbourhoods and regeneration (www.data4nr.net) service is run by OCSI on behalf of the Department for Communities and Local Government. This signposts all government datasets that are published at Local Authority to neighbourhood level for all areas across England, covering themes such as the economy and employment, health, education & skills, crime, and so on. The datasets are searchable by
1 2

http://www.thecarerscentre.org/about-us/carer-centre-reports/ Based on 807 users (p3 2010 Annual Report), of which 23% provide 1-19 hours per week (average for this group assumed to be 10 hours), 22% 20-49 hours (average for this group assumed to be 35 hours), 56% 50 or more hours (average for this group assumed to be 60 hours) (p4, Carers Survey 2009).

theme; keyword; geographical level; whether trend data is available; and whether equalities data is available. A video briefing for how to use Data4nr is being developed as a DataBridge output. Additional datasets that may be available locally: Local partners such as BHCC also hold an enormous amount of data on local issues that is not published nationally. A briefing note on datasets that are held locally is being developed as a DataBridge output. Carers datasets: Carers Allowance data published at Local Authority level by DWP - www.data4nr.net/search-results/554/. The Data4nr search (www.data4nr.net/search/ ) also identifies other carers datasets, including neighbourhood level from Census 2001, and Local Authority level indicators on carers receiving support services. Jo Ivens & Tom Smith Aug 201

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