An Authority Seeking to Make Its Own Assessment of Its Work with Carers Needs to Decide

IMPLEMENTING THE CARERS STRATEGY IN THE EAST MIDLANDS

A TOOLKIT TO SUPPORT SELF-ASSESSMENT AND COMPENDIUM OF GOOD PRACTICE

FIRST EDITION

NOVEMBER 2009 CONTENTS 1 INTRODUCTION ………………………………………………………………… 3

2 SELF-ASSESSING PROGRESS: CHECKLIST SECTION ………………… 5

2.1 Some introductory/cross-cutting considerations …………………………. 5 2.2 Some Key Questions on Carer Identification …………………………….. 6 2.3 Some Key Questions on Carers and Health ……………………………... 7 2.4 Some Key Questions on Carers and Transformation …………………… 8 2.5 Some Key Questions on Carers and Breaks …………………………….. 9 2.6 Some Key Questions on Carers and Self Assessment …………………. 10 2.7 Some Key Questions About Partnership Working to Support the Carers Strategy ……………………………………………………………… 11

3 CHOOSING A FOCUS WHEN ASSESSING WORK WITH CARERS ……. 12

4. ANALYSIS OF EXISTING PRACTICE IN THE EAST MIDLANDS ……….. 17

4.1 Involving Carers ……………………………………………………………... 17 4.2 Identification, Outreach and Assessment ………………………………… 19 4.2.1 Examples of access and outreach being linked to assessment and to partnership …………………………………………………….. 21 4.2.2 Examples of how information provision supports access and outreach ………………………………………………………………... 24 4.3 Choice and Control …………………………………..……………………… 25 4.3.1 Current Practice Examples ………………………………………….. 26 4.4 Training ………………………………………………………………………. 29 4.5 Approaches to Partnership with Health …………………………………… 30 4.6 Breaks for Carers …………………………………………………………... 32

5. GOOD PRACTICE EXAMPLES Box 1 Northamptonshire County Council – outpost assessment 35 Box 2 Derby City Council – Carers Emergency Card 36 Box 3 Derbyshire County Council - Carers’ Emergency Plan 38 Box 4 Leicestershire County Council - Carers Development Workers 40 Box 5 Derby City Council - Carers’ Discount Card 41 Box 6 Lincolnshire County Council - Carers’ Personal Budgets 42 Box 7 Lincolnshire County Council - Education, Employment, Leisure and 43 Learning Scheme Box 8 Northamptonshire County Council - NHS Support Demonstrator Site 44 Box 9 Nottinghamshire County Council - Demonstrator Site 46 Box 10 Derby City Council - Demonstrator Site 48 Local Authority Websites 49

APPENDIX 1 - National carers strategy…………………………………………………… 50 APPENDIX 2 - Resources on carers and health………………………………………… 51 APPENDIX 3 - Personalisation …………………………………………………………… 52 APPENDIX 4 - Comprehensive carers support model…………………………………. 53 APPENDIX 5 - Commissioning for carers ………………………………………………… 54 APPENDIX 6 - IDEA Beacons scheme…………………………………………………… 55 APPENDIX 7 - Strategic Shift to Prevention……………………………………………… 56 APPENDIX 8 - Outcomes and performance framework ………………………………… 58 APPENDIX 9 - Miscellaneous research ………………………………………………. 61

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 1 INTRODUCTION

1:1 The purpose of this toolkit is to be a resource to local authorities and NHS organisations that will assist them in addressing whether they are fulfilling their responsibilities under the national carers strategy, “Carers at the heart of 21st-century families and communities: a caring system on your side, a life of your own.” (HM Government, June 2008). The toolkit gives examples of good practice as well as outlining the key issues to be addressed.

1:2 The national carers strategy’s aspirations – such as carers experiencing “a system on their side” and having opportunities for a life outside caring - are partly about the carer’s own health and wellbeing. This in itself is significant, as carers constitute about 10% of any given locality or practice population.

1:3 However, the role of the carer is also crucial to the delivery of a range of ‘patient specific’ strategies, whether they relate to dementia, long term care, mental health or learning disabilities, etc. Work with carers also underpins the wider objectives found in Putting People First, High Quality Care For All and World Class Commissioning.

1:4 With a growing population of older people, a sizeable population group with long term conditions, the increased survival rate of children with complex health needs on the one hand, and population mobility, cultural changes and struggles over work/life balance on the other, the maintenance of so-called ‘informal’ care at a level adequate to either the individual’s or the family’s quality of life cannot be taken for granted.

1:5 Therefore the questions for social care and health commissioners and practitioners include:  Do we know who our local carers are and what their needs are?  How can carers be helped to support the people they care for?  How can carers’ own health and social opportunities be supported?  Which other strategies rely particularly on carers, and in what ways? 3

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected]  What evidence do we have about our own performance and what constitutes best practice?

1:6 Tools already exist to consider local carers’ strategies from a comprehensive standpoint, some of which are referenced in the Appendices.

However, local organisations might wish to choose a perspective from which to view their work – for example, considering the contribution that carer support might make to the implementation of another strategy or national service framework, or to the introduction of personalisation changes across the board.

1:7 In addition, the issue of which parts of the carer population are targeted by strategies or by particular schemes appears an important one. This is because new financial stringencies are likely to require greater clarity of eligibility and focus – at the same time as issues about excluded and hard to reach groups demand greater attention.

1:8 These choices of focus should be informed by a preliminary analysis of needs, strengths, weaknesses and policy priorities. This is discussed further on pages 12 to 16.

1:9 The next two sections (which can be used as a stand-alone mini-guide) introduce some key questions and performance review checklists that can provide a quick way in to local self-assessment. However, particularly for those agencies planning ahead for a major review, the discussion on pages 12 to 16 should be considered.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 2 SELF-ASSESSING PROGRESS: CHECKLIST SECTION

2.1 Some introductory/cross-cutting considerations

1. How much weight is given to the local carers strategy, as opposed to the robust inclusion of carers in the Local Area Agreement, the Joint Commissioning Strategy, and specific strategies such as those for dementia, learning disabilities or end of life care? (Or local employment, learning or leisure strategies?) In terms of impact, what is the right balance?

2. How well is the work making use of carer participation – is there a joint understanding of this, and is it resourced in a consistent way?

3. Do initiatives clarify which carers are targeted or prioritised? What aspects of provision are genuinely for ‘all’ carers?

4. To what extent is work with carers based on needs analyses, customer feedback and the development of an evidence base?

5. Have all developments for carers been tested for their equalities impact – against all six dimensions, not just ethnicity?

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 2.2 Some Key Questions on Carer Identification

1. Is there a joint plan for identifying carers, including joint publicity products and initiatives?

2. Do identification plans specify high priority groups of carers?

3. Have all agencies agreed actions at the point of identification, e.g., supply of a carers resource pack (including explanation of carers’ legal rights)?

4. Are GPs and their teams making active use of their carer identification, registration and referral processes?

5. Are secondary health care organisations involved in identification work?

6. Is identification of carers included in relevant staff training?

7. Has identification information from the Census, social care records and GP registrations been used to inform analysis of carers’ needs in the JSNA? Are knowledge gaps being addressed?

8. Do identification plans adequately address the issues of isolated carers and less well reached communities – including partnership work with relevant community groups?

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 2.3 Some Key Questions on Carers and Health

1. Is there joint ownership of local carers’ strategies and plans across health and social care? Are the carer-specific documents and workstreams linked to the NHS Next Stage Review (Darzi)?

2. What joint working is there around identification, registration and referral, in line with QOF indicator Management 9?

3. Is there a move towards joint commissioning of carers’ services?

4. Has work been undertaken to define carer pathways across both primary and secondary health care, e.g., in respect of hospital discharge, appointment and transport flexibilities?

5. Are there joint initiatives ensuring coverage of carers’ issues in local priority action areas, e.g., dementia, long term conditions, end of life care?

6. Does joint staff training about the agenda for carers take place?

7. Are carers provided with training that covers health and social care issues?

8. Is there a joint approach to carer involvement/participation?

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 2.4 Some Key Questions on Carers and Transformation

1. How well are carers served by initiatives on universal information, advice and advocacy?

2. How is carers’ independence promoted, e.g., through provision of breaks and the ‘life of your own’ agenda?

3. Is there a structured approach to early intervention with carers, e.g., through outreach programmes for particular groups, simplified access systems?

4. Have person centred planning approaches been explicitly applied to work with carers?

5. Have carers been involved in the design of self directed support processes, including self assessment and personal budgets?

6. Is there a clear and consistent approach to understanding carers’ needs across assessments and personal budgets for service users, and assessments and personal budgets for carers?

7. Do local strategies identify ways in which carers are supported to be active citizens, both economically and socially?

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 2.5 Some Key Questions on Carers and Breaks

1. Have the Primary Care Trust and council agreed a joint breaks plan?

2. Does that plan take account of the need to develop more flexible and person-centred options, and provide carers and service users with more choice and control?

3. Do plans provide for a widened range of breaks, in terms of the type and duration of break, including breaks required at short notice or in emergencies?

4. Can it be shown that carers’ views, including regular customer feedback, have influenced the development of breaks plans and services?

5. Are breaks plans integrated sufficiently with priority strategies, such as the local dementia strategy, and with personalisation developments?

6. Are breaks services achieving adequate reach and take-up across the diversity of local communities?

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 2.6 Some Key Questions on Carers and Self Assessment

1. Have self-assessment arrangements been planned or implemented?

2. Are self-assessment developments integrated with wider initiatives in relation to simplification of systems/reduced bureaucracy, clearer eligibility, accessible contact points, etc?

3. Does the development of self-assessment take sufficient account of the needs of diverse communities, carers with literacy difficulties or sensory impairments, and carers without access to the internet?

4. Have self-assessment processes been piloted and changed in line with feedback where necessary?

5. If initiatives are being developed in partnership with the voluntary sector, are roles and relationships clear to all partners? Are carers clear about who is responsible for what?

6. Are carers still made aware of their legal right to request a full assessment of their needs?

7. Has the relationship between the assessment of the carer and that of the service user been specified, e.g., in relation to personal budgets, breaks services?

8. Are self-assessment developments supported by staff training and internal and external communications?

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 2.7 Some Key Questions About Partnership Working to Support the Carers Strategy

1. Is a joint carers strategy in place?

2. If so, does it take the form of, or is it complemented by, a joint commissioning plan for carers?

3. Are carers’ needs covered fully in the Joint Strategic Needs Assessment?

4. Does local partnership working support and make full use of carer participation? Are organisations relevant to the six equalities strands involved adequately?

5. Does the local approach to partnership recognise and use the particular expertise of the voluntary sector, as highlighted in the national carers strategy? Are there plans to expand the role of the voluntary sector?

6. To what extend is ‘wider’ partnership developing, e.g., with the employment or leisure sectors?

7. Are issues relevant to carers integrated into multi-agency workstreams such as workforce development and market development?

8. Does staff training related to carers take place on an inter-agency basis and address joint working issues?

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 3 CHOOSING A FOCUS WHEN ASSESSING WORK WITH CARERS

3:1 The conventional means of using checklists was to construct them around a local carers strategy, following the chapter headings of the document, e.g. identification, involvement, information, assessment, support services, equalities issues.

3:2 As the understanding of the breadth of the carers agenda has developed, this kind of list has been added to (e.g. training and employment issues): there is a risk that a self-assessment becomes a lengthy exercise, even with the help of tools such as the IDeA Beacons toolkit (still useful if a little out- dated) and the PRTC Carers Comprehensive Carers Support model.

3:3 Managing the size of the task might lead to a shallow box-ticking approach. This reinforces the argument for ‘angling’ the assessment in some way – even if it is decided eventually that a comperhensive approach is needed, perhaps because it is a long time since the strategy was reviewed. However, the capacity to undertake a review must also be part of the equation.

3:4 Differently-focussed approaches can be derived from the Outcomes and Performance Framework (CSCI/CQC) and the recently published Commissioning For Carers document. The publication “Supporting Carers: an action guide for GPs and their teams” provides an example of an NHS- specific tool. (These are all referenced in the Appendices.)

3:5 A transformation emphasis might mean structuring around concepts such as universal services, early intervention, choice and control and social capital. Another type of locally sensitive framework might focus on issues of equality of access, e.g., in a situation where there was concern that few carers had been identified, or where particular communities were not accessing support.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 3:6 Therefore, in choosing between a comprehensive or more selective approach, or between differently focussed frameworks, it would be advisable to undertake an initial strengths and challenges analysis. For example, an agency that is confident of its record on carer involvement might not wish to structure its assessment of progress around a participation theme, if it was aware that there were more pressing deficits in front-line delivery or in clarity of eligibility and priority.

3:7 Initial questions might include the following:  What carer feedback and performance information have we got that enables us to evidence our strengths and weaknesses?  Do we think our self-assessment needs to focus more deeply on a particular dimension, e.g., carer participation, personalisation, front-line delivery, equalities aspects, commissioning, partnership working?

3:8 Arguably, the strongest influences on choosing a more focussed approach are ‘fit with policy priorities’ and ‘resources and eligibility’. In some circumstances these might override a preference for focussing on known weak areas.

3:9 ‘Fit with policy priorities’ poses the question “are there crucial local priorities (e.g., specific elements of NHS post-Darzi workstreams, the transformation agenda), that mean we should focus primarily on the related aspects of work with carers?”

3:10 ‘Resources and eligibility’ asks, “are there likely to be pressures on resources and changes to eligibility that mean we should look particularly at how resources for carers are used and how well they are targeted?”

3:11 This might involve narrowing down further to certain areas of service where issues of decommissioning/recommissioning are raised. An example might be a respite care service that may be no longer fit for purpose.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Figure 1 A theoretical and diagrammatic representation is given below.

The setting for assessing progress with taking forward work with carers consists firstly of the local needs of carers and how they are expressed and prioritised in dialogue with local agencies, and secondly of four policy- related contexts for the agencies: the transformation of adult social care agenda, the Next Stage Review for the NHS (Higher Quality Care For All), the national carers strategy itself, and such local and national policies (e.g., in relation to eligibility) that will emerge in the new financial situation.

Transformation Next Stage Review context context

Carer context

New financial situation

Delivery context

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 3:12 The transformation context consists of such aspects as:  maximising access to universal services including information and advice  promoting independence  early intervention  personalisation of services, including person centred planning, self directed support and advocacy  partnerships with health and with community/user-led organisations  sustainable and cost-effective systems.

3:13 The Next Stage Review (High Quality Care For All) agenda includes:  improving access to care  improving patient experience  making services more effective  enabling staff to push forward quality  integrating care.

3:14 These ‘Darzi’ themes are complemented by practice-based commissioning concepts including understanding health needs, service review and service delivery option analysis. Similarly, there are clear links with World Class Commissioning competencies, such as public engagement and work with community partners.

3:15 The ‘new financial situation’ element in the diagram is still taking shape, but it is worth considering whether it would change the way work with carers has been focussed in the last few years. For example, might the ‘opportunity’ emphasis fall back, with a greater weight being put on risk and safeguarding? Might carer involvement carry a more explicit aspect of contributing to prioritising/rationing decisions?

3:16 The DH/CSIP/DWP publication Strategic Shift To Prevention (see page 53) argues that although different levels of prevention can be identified, it is important to ensure some level of intervention across the whole spectrum of

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] need. Combining this ‘layered’ idea with the coming new financial realities implies the need for a very clear understanding of which services are for all carers and which are for particular groups, especially high risk groups.

3:17 In summary, the key features of an approach to self-assessment might be:  an initial appraisal of strengths and weaknesses, taking account of the adequacy of the evidence base and of the views of carers  a choice between comprehensive and focussed approaches, having regard to questions such as policy fit and future resources  a selective use of off-the-shelf models and frameworks (see Appendices).

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 4. ANALYSIS OF EXISTING PRACTICE IN THE EAST MIDLANDS

This chapter uses examples of current good practice woven into a discussion of issues relating to the work that local authorities and their partners are involved in.

Additional details on selected examples, together with contact details, are given in the subsequent chapter.

4.1 Involving Carers

The field of work with carers is replete with policy documents such as the national carers strategy that can claim to be based on extensive consultation. Nevertheless, there remains a strong case for local models of involvement even if there is a certain degree of consistency and repetition in carers’ views. This is all part of making services responsive to need, alongside understanding the individual family’s and carer’s circumstances.

Types of involvement range from informing and asking (consultation) through different levels of participation towards models that confer a degree of ‘carer control’.

It will be interesting to see how the ways of working collectively with carers match up to the degrees of choice and control being encouraged at the individual level. There is likely to be a move towards making involvement more structured and productive in the context of processes such as the Joint Strategic Needs Assessment.

There is a range of approaches within the East Midlands, albeit with some common elements. The three examples picked out below have been chosen to illustrate some distinct features.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Lincolnshire County Council takes a strong partnership approach with a minimum 50% carer representation on groups; group make-up develops organically rather than adopting a pre-determined strategy group membership structure.

The sub-group structure that has emerged gives carers choice over times and locations and the level of involvement: e.g., carers can contribute without having to attend meetings, home visits are sometimes made to remote rural carers.

The Lincolnshire structure includes the Carers Partnership, Carers Information Group, Carers Training Partnership, Carers Employment Group, and Palliative Care Carers Strategy Group. There are potential complications arising from the size of meetings and coordination between groups – a Carers Partnership Officer is employed to support the process.

In Nottingham City Council, an advert was placed in the Nottingham Arrow, which is delivered to each city household. One purpose of the advert was to advertise the availability of services to carers who were currently not in touch with services, and to establish from carers how easy was it for them to access information.

The initiative was used to support consultation and involvement as follows. Carers who responded to the advert in the Nottingham Arrow were sent a questionnaire, and later a selected group received a home visit for a more detailed questionnaire.

From the survey 122 new carers were identified who were not currently in receipt of services. The whole respondent group was contacted to ask if they would like to be on a database for future contact.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Leicester City Council has a different model in that there is a basic reliance on carers who sign up for involvement in consultation (and receipt of a newsletter) at the time of assessment. (This is covered by a standard question on the assessment form, subsequently recorded on Carefirst.)

The advantage of this system is that it uses an explicit and recorded opt-in approach, with carers being given the choice of withdrawing each time a newsletter comes out.

Although many carers might be more interested in receiving the newsletter than taking part in surveys or events, questionnaires sent out using this list get good response rates. There are over 600 carers on this list. Leicester has also used radio, press and community television to contact other carers, though these methods have often met with limited responses.

4.2 Identification, Outreach and Assessment

The identification of carers, giving them information and assessing their needs has long appeared the most fundamental set of building blocks in carer support. Without these functions, there are no known carers to assess, and without assessment there is no needs-based foundation to providing services.

The new importance lain upon prevention and early intervention suggest that ‘outreach’ might be considered alongside alongside identification and assessment.

But the fact that both legal obligation and performance indicators centre on assessment can reinforce a focus on this part of the carers agenda. Such drivers might indeed result in a further narrowing of approach, e.g., if it is decided to concentrate on assessing a higher proportion of known carers, rather than finding new carers to assess.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Therefore the ‘obviousness’ of the identification and assessment agenda masks some choices. In practice, it seems that there might be some lack of clarity (and possibly some inconsistency) about how broad or narrow is the target group.

On the one hand:  It is generally accepted that there are large numbers of ‘hidden’ carers  It is acknowledged that agencies need to do more to identify carers  There is a recognition that agencies might, inadvertently or otherwise, end up working with a fairly static group of carers while other people pass into and out of caring with no supportive contact  It is common practice to distribute information products that aim to help carers identify themselves as carers and that inform them of their right to request an assessment of their needs.

On the other:  The concept of ‘hidden’ carers obscures considerable differences between carers who might be at risk of exclusion because of ethnicity, or who care for people with relatively little-known conditions, or who are excluded by issues of place or related social issues (rurality or urban deprivation)  Efforts to identify more carers might be driven by ‘volume’ (e.g. the argument that primary health care is fundamental purely by virtue of the large number of people who use it) than by a sense of which carers have a priority need to be identified  There are few examples of attempts to target those carers whose career as a carer might be of relatively short duration  The distribution of information is not always very planned or targeted, and is rarely evaluated for effectiveness.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] And there is one crucial point underlying these factors:  We are not always clear about which carers we are working with and which carers we want to inform and identify and assess.

One reason why this last point is important is that it relates to different models of prevention. The spectrum of prevention includes providing preventative advice to groups of people with low levels of need, but also taking specific preventative actions to prevent further deterioration in people with already high needs (see “Making The Strategic Shift To Prevention” in the Appendices).

The decisions about focus and priority will become more significant for two reasons:  National policy increasingly constructs carers as a ‘citizenship’ or ‘equalities’ issue, which can create a mismatch in expectations with actual practice, which is often highly selective in supporting narrow groups of carers (even if this is not necessarily planned)  Financial stringency will inevitably sharpen questions of eligibility and priority.

Fortunately, practice developments appear to be creating new ‘mixes’ of approaches to identification, outreach and assessment, which also bring in new ways of partnership working and new systems.

4.2.1 Examples of access and outreach being linked to assessment and to partnership

In Northamptonshire, staff undertaking assessments are outposted to Northamptonshire Carers, creating a more accessible route into services, and one which reflects local carers’ expressed preference for voluntary sector contact (see box 1).

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] This model has been introduced incrementally after a successful experience in adult mental health services. It does not yet apply across all teams, but will expand into primary health care as part of the Northamptonshire health demonstrator site (see box 9).

The demonstrator site will also explore the use of databases to better identify carers and their needs, promote information to ‘hidden’ carers and target young adult carers.

Derby City Council is another authority using the voluntary sector to provide a different route into the system. Derbyshire Carers Association has a new Emergency Planning and Information Service. This will undertake assessments and reviews for those carers who are not in current contact with social services; such assessments will be validated by council staff.

As the name suggests, this new approach will focus on the emergency card scheme and contingency plan for carers (see box 2). Once again, local consultation responses have provided the rationale for a voluntary sector approach.

Derbyshire County Council also uses the contingency plan as a means of drawing carers into contact with services. Derbyshire promotes use of its emergency card scheme through a widely distributed “Caring for Carers” newsletter.

The newsletter includes a 4-page section at the back for completion by the carer: record of carer details, contingency plan, nominated emergency contacts, and a section asking about the caring role and its impacts. Finally, there is a question asking if the carer requires a full assessment of his/her needs. (see box 3).

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Completion of the form at the back of the newsletter triggers issue of the emergency card. The record of the carer and the card issue can also be completed via telephone contact or on-line completion.

Derbyshire also plans to offer an information prescription via contacts with Call Derbyshire or via primary health care. Based on training of call centre staff/receptionists, this will enable tailored information to be provided, with a prompt question about the possible need for a full assessment being included – and also a “do you want someone to call you back?” option to cover the possibility that a carer might not respond immediately to the offer of an assessment.

Combined with the self-completion aspect of the emergency card paperwork via the newsletter, the information prescription represents a staged move through levels of contact and assessment. This links to policy aims of improved access, early intervention and simpler systems.

A different partnership approach to outreach is represented by the Carers Development Workers employed by Leicestershire County Council. These workers are sited in the voluntary sector (Councils of Voluntary Service) with an outreach and coordination role.

The original brief was to encourage carer identification and support carers’ groups. The focus moved towards a greater emphasis on individual identification but also included the idea of the ‘hub of local partnerships and initiatives’, working across social care, health and the voluntary sector (see box 4).

The project extended to all seven districts of the county in 2003 after being piloted in three districts in 2001. There have been significant variations from district to district. On one hand this has allowed useful experimentation in developing particular types of work (e.g. Hinckley is well known for

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] partnership working with primary health care); on the other, it has raised some issues about consistency and control.

The development workers have also been central to bringing forward the county’s ‘prescription pad’ – this evidences that the carer has been registered by her/his GP and forms the basis of a referral to the carers development workers for the supply of information and advice as appropriate.

4.2.2 Examples of how information provision supports access and outreach

The provision of information is an important building block in providing access to services and reaching out to new carers. As was noted above, this area of work is not always the most explicitly targeted or planned, but there are some interesting examples of a more structured approach in the East Midlands.

In Nottinghamshire, a project was commissioned from Carers UK to analyse information products and consult with carers about information needs. The project identified that carers were getting similar information several times and that information resources contained much duplication.

As a result, a new basic information pack has been made available via different routes (this can be tailored to the individual) that will be delivered through a multi-agency dissemination and signposting strategy. The pack is complemented by a widely distributed newsletter and a welfare rights publication.

Nottingham City Council is another council using consultation results and carer involvement to produce an information pack.

Lincolnshire County Council, in keeping with its carer-led approach, developed an information pack through its Carers Information Group. The

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] pack includes a GP referral form and carers team leaflet. It has had a print run of 5000 copies, with yearly updates planned, and a web version forthcoming.

The County Council’s media and communications team helped the Information Group to structure a media campaign with explicit aims, outcomes and monitoring, including a year planner of media activity. Monitoring includes checking source of telephone requests (known or unknown carer) and referral rates.

Derbyshire’s use of a widely distributed newsletter has already been mentioned in relation to the emergency card scheme; it also serves a wider information and outreach purpose, and other councils use newsletters in a similar way.

Derby City Council is opening another angle on outreach by planning the introduction of a Carers’ Discount Scheme (see box 5), which would share features with the scheme for council staff.

As well as having its intrinsic economic benefits, the card would act as a means of linking carers to the service system. It is hoped to link the scheme with GPs’ registers of carers, subject to agreement with the PCT and GPs.

4.3 Choice and Control

A presentation by Martin Routledge of the Department of Health (London, April 2009) viewed choice and control in the context of the wider personalisation agenda (universal services, social capital and early intervention).

He argued that the distinct features of the choice agenda were:  the expert partners role

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected]  carers having greater choice and control to manage their own support  flexible services available to meet the needs of all family members  effective advocacy and support planning for carers.

Nevertheless, it is difficult to avoid a concentration on personal budgets as the lead aspect of choice and control.

Personal budgets are very important because of the great opportunities they offer but also because there is an element of risk that has to be considered.

Personal budgets may:  Relieve the carer by enabling more appropriate provision for the person using services  Identify the needs of the carer more effectively  Result in more support being provided for the carer’s own needs.

On the other hand, personal budgets might:  Fail to identify carers’ needs through too narrow a focus on the service user  Impose ‘care coordination’ burdens on carers  Introduce greater anxieties about the quality of care delivered by a more diverse range of providers.

The research on the individual budgets pilots indicated that the balance for carers fell firmly on the positive side, but with variations related to different user groups and to what the carer was ‘taking on’.

For example, carers were not necessarily spending less time caring as a result of personal budgets for the person cared for, but had greater choice about the type of help they provided as opposed to the type provided by formal services.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Carers of older people in the research sample felt more ‘recognised’ by the new process, whereas carers of people with learning disabilities (perhaps more involved in previous assessments) did not feel this.

A more specific issue for carers is that a number of Carers Grant projects have changed into Carers’ Personal Budgets schemes, while remaining restricted to very low levels of resources and having an unclear relationship to the total package of support provided to the family via community care services. Some examples from the East Midlands follow.

4.3.1 Current Practice Examples

The approach taken by Rutland County Council is that a personal budget for a carer may result from a carers’ assessment or from a community care assessment.

A need is identified, an appropriate service is priced from a standard price list, and then the carer is free to use the payment for that priced service or something different that meets the need (the need and response is identified in a support plan). The price list includes an ‘access allowance’ which might support transport for training or shopping, although this has been little used to date.

In Lincolnshire (whose scheme has been a major influence on the Northamptonshire approach), allocations are based on a Resource Allocation System (RAS), developed in collaboration with carers (see box 6). The resource allocator refers to the outcome domains of ‘my health, a life of my own, feeling valued and respected, confident in the future, being in control’. These domains are rated in terms of minimal impact, some impact, a lot of impact, serious impact.

The resulting ‘score’ and consequent financial allocation has been subject to adjustment, one reason for this being that the first version resulted in the

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] lowest allocations being too low. The adjusted scheme still goes up to only £275 as a maximum (the Northamptonshire version has a much higher limit).

The domain ratings are contained in a carer assessment form that can be completed as a self- assessment or supported by a professional. In addition to questions about the four domains, it covers the type of support already received, the hours of caring per week, and a prompt about benefits checks. In the case of each domain, there is free text space (“current situation” and “what do I feel will help me”) as well as the rating table.

Carers are notified of the level allocated; then they have to complete a support plan showing the outcomes and how they will be achieved.

Personal budgets in Lincolnshire are used for breaks with or without the person being cared for (including holidays and days out), holistic treatments and leisure/hobby activities and equipment.

The Northamptonshire version uses similar paperwork, but is based around bands of £250, £500 and £750. Lower level payments of £250 may be accessed via a self-assessment (this level accounts for about 60% of cases).

The scheme is described as being orientated to “quality of life not carer breakdown”, thus perhaps reducing any risk of the scheme being viewed mistakenly as the entire means of supporting the carer.

Leicester City Council’s Carers’ Personal Budgets scheme also uses bands that relate to four domains, but because there are only two bands (£300/£150), it could be argued that the result is little different to categorising the assessment as critical or substantial respectively (carers’ assessments in Leicester are always categorised by the FACS-like four Carers Needs Framework bands).

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Leicester’s scheme requires a separate personal budgets application form (though not a support plan), but because there are only two bands and there is no complexity around ‘scoring’, the process is viewed as relatively cost- effective. The process costs are nonetheless considered an issue and are kept under review.

One deliberate variation on the domains concept in Leicester is the use of house and garden care as a domain. This was included on the basis of consultation evidence about older people’s preference for practical help; it was thought that a scheme without this aspect might discriminate by age.

4.4 Training

Training for carers is an area that has expanded gradually over recent years with national developments such as Looking After Me and Carers Into Education – it now seems to be really taking off, and not just because of Caring With Confidence (the expert carers programme). The range of approaches is illustrated by the examples below.

Northamptonshire County Council runs a Needs and Aspirations project. 400 carers accessed this scheme in its first six months. Needs and Aspirations describes itself as “a directory offering a wide range of free training and leisure opportunities for carers” – Nene Valley Community Action acts as a booking agent. There is an intention to create new opportunities, taking account of the fact that Northamptonshire does not have a Caring With Confidence provider.

Nottinghamshire County Council emphasises a widely publicised offer of the Looking After Me course. This is succeeding in bringing in many carers who are not accessing services – another approach to outreach. Not all of these carers choose to take up an assessment subsequently, but they tend to get a more positive view of the agencies from undertaking the course, as

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] well as accessing information and looking at their own health and well-being. An imaginative touch is making available free copies of The Selfish Pig’s Guide To Caring.

Lincolnshire County Council has recently developed the Education, Employment, Leisure and Learning Scheme (EELLS) (see box 7). This arose from listening to carers who felt that their caring role contributed to them being denied access to education, employment and training. The scheme has been designed to achieve outcomes of carers being in control, having a life of their own, participating in the community and maintaining economic well-being.

EELLS is being established through a coordinator post placed in the Carer Support Service (carers centre). That role will be responsible for analysing carers’ needs and preferences in relation to each area of activity and to work with providers to identify or develop responses to carers’ collective and individual needs. This might involve group membership purchase schemes, development of day breaks and provision of replacement care services. EELLS is likely to be one area in which personal budgets will be used.

Leicester City Council funds CLASP The Carers Centre to provide a number of courses, some of which overlap with the Caring With Confidence approach. Other voluntary organisations especially in the mental health field offer courses based around coping with caring and understanding the health and care systems. There is a plan to expand the range of training towards wider skills-based and ‘return to work’ training but this has not yet been resourced.

Rutland County Council has a pattern somewhat similar to Leicester, using a range of providers: CLASP, but also LAMP (mental health), the Alzheimer’s Society, the British Heart Foundation and Rutland Home Improvements are amongst those offering sessions.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] 4.5 Approaches to Partnership with Health

At the level of the individual patient and carer, the involvement of health professionals with the carer may seem an obvious positive factor, but until recently there was a view that the NHS was not required to plan for any work with carers, other than around the option to have a system for identifying and referring carers (Quality Outcome Framework indicator Management 9).

The national carers strategy included some points designed to change this:  ‘NHS support for carers’ demonstrator sites piloting ways in which primary care trusts (PCTs) can better support carers in GP surgeries, hospitals and other settings  The breaks funding associated with Joint Breaks Plans  The piloting of annual health checks for carers  The idea that the NHS might provide replacement care when carers attend hospital appointments and screening sessions  Work with the Royal College of GPs to develop a training programme for GPs to help them better to understand carers’ needs.

The Princess Royal Trust for Carers and the Royal College of General Practitioners have produced “Supporting Carers: an action guide for general practitioners and their teams”. This gives a good practical basis for local discussions about taking forward more work in PCTs.

“Supporting Carers” suggests that GPs/primary care teams should aiming to ensure that:  carers are recognised, acknowledged and treated as partners  carers are able to maintain good health  sustainable caring is supported, thus reducing the need for secondary and residential care  carers are made aware of (or referred to) local statutory and voluntary sector support services. 31

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] It goes on to show how carers’ health is affected by their caring role and gives examples of projects that have contributed to the identification and support of carers in primary care.

Nevertheless, there is an acknowledgement that the evidence base is still limited. It should be expected that inter-agency discussions will continue to include a degree of scepticism about the preventative effect of investing in carer support. Consequently, there will be a need to carefully link the carers agenda to particular NHS strategies and targets.

Derbyshire County PCT has created a Carers Commissioning Manager post reflecting carers as a World Class Commissioning issue. On the health side, there has been a track record of work on ‘employee carers’ and on involvement for carers of people with mental health problems.

Carers Week also exemplifies the partnership working between social care and health in Derbyshire, with 14 information events in hospital locations during the 2009 week, over and above events or stalls in health centres, council offices, libraries, sports centres and supermarkets.

Northamptonshire is an NHS Support demonstrator site (see box 8). This will include appointment of a Joint Carers Commissioner, recruitment of GP- based Carers Assessment/ Support Workers, an information campaign, a peer support project and a social enterprise development.

4.6 Breaks For Carers

The national carers strategy emphasised the importance of breaks as a “life of your own” issue, an emphasis that was backed by the national consultation results.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] The national strategy allocated money to PCTs “who will be required to work with their local authority partners to publish joint plans – as part of the Joint Strategic needs assessment process– for the provision of breaks. These plans will be published following a local consultation with relevant parties, including the third sector and carers themselves. Setting out a strategy for improving quality and choice, the plans will take account of both the new money and the existing money provided to local authorities for planned breaks through the Carers Grant.”

The national strategy went on to say that breaks services should cater for a wide range of individual needs, “from holidays with the people they support through to sitting or befriending services or access to local leisure services”. It added that more knowledge was needed about quality, cost- effectiveness and innovation in breaks services and therefore there would be a demonstrator sites programme. A final point from the national document was a reference to making more use of the expertise of the third sector.

The East Midlands has two breaks demonstrator sites. Nottinghamshire County Council’s pilot aims to evaluate existing breaks services, test new initiatives across diverse communities and increase awareness of how personal budgets can be used for breaks.

There will be multiple strands to the pilot, including services for travelling communities and other seldom reached groups, dementia services, young adult carers and carers living in rural areas (see Box 9).

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Derby City Council identified a pressing need to improve access to, and the diversity of, breaks for carers. The site will work with health to expand the range of breaks, and will also establish an information prescription service offering information about breaks and other support. A particular feature will be the creation of a direct access ‘choose and book’ facility including an on-line option. There will be links made with the local dementia strategy. For a fuller list of objectives, see Box 10.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Box 1 Northamptonshire County Outposted assessment Council worker model

Carers Assessment and Support Workers employed by Northamptonshire Carers Association are based in a variety of voluntary sector locations (Age Concern, Alzheimer’s Society, Ability Northants etc.) and carry out assessments which are validated by social work qualified staff (signed off by County Council officer for Carers’ Personal Budgets). This approach follows on from a slightly different project funded by the mental health trust (Northamptonshire Carers Association staff in Community Mental Health Teams, carrying out assessments for carers of people on Care Programme Approach). The voluntary sector-based model is proving successful in terms of:  better knowledge of carers’ services and thus more effective signposting  improved quality of carers assessments  better performance on NI 135  more continuity for carers (workers keep cases for up to 6 months; carers will have the same member of staff on re-referral). The prevention agenda and the issues of quality and quantity of assessments mean that the possibility is under consideration of all carers assessments being provided through this type of arrangement .

Contact: Maureen Jerram, Northamptonshire County Council, County Hall PO Box 177, Northampton, NN1 1AY Telephone: 01604 237602 [email protected]

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Box 2 Derby City Council Carers’ Emergency Card

(Edited extracts from service description document for Derbyshire Carers Association)

Overview of the Service The service will provide carers with an emergency planning, information, and signposting service that will form an integral part of the Council’s emergency scheme for unpaid carers.

The service will provide unpaid carers with an emergency card and a contingency plan, which will provide a mechanism at the time of a carer’s crisis to ensure that the cared for person can remain in their own home.

A carer’s crisis situation will include the carer’s emergency admission to hospital or other health needs which preclude them from continuing to provide care; a family emergency such as a close relative taking ill and requiring help/attention; a real risk to the carer’s employment on a particular occasion; and a short notice family crisis.

Service principles

1. The service will be provided on an open access basis to all unpaid carers living in Derby.

2. The service will be sensitive to the needs and choices both of the carer and the cared for person.

3. Initial targeting will focus on those unpaid carers, who are not currently in contact with the statutory services.

4. The service will be promoted across all communities living in Derby and particular efforts will be made to contact ‘hard to reach’ carers, who often remain hidden to statutory services……..

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Service outputs  Carers Emergency Cards provided. Minimum target – 1,000 cards

 Service promoted widely across the city including promotion of the Emergency Card, its use and recognition amongst emergency services such as A&E, police and ambulance services.

 Completed face to face carer assessments. The service will aim to complete 200 such assessments by the end of year one. This target will be re-evaluated each year and will draw on lessons from the scheme’s operation. The intention is to increase the number of completed face to face carer assessments each year.

 Completed telephone reviews. . Minimum target – six monthly telephone review of every carer who has been assessed by Derbyshire Carers Association and who is caring for a person not in receipt of community care services. List of carers to be reviewed will be provided by Adult Social Services…….

Service outcomes

Carers feel listened to and supported in making contingency plans that can be utilised in the event of an unpredictable crisis.

Carers will have felt supported to successfully deal with significant life changes, make positive life choices and plan for the future.

Greater awareness amongst carers about their right to assessment and services available for carer support.

Contact: Marilyn Hambly, Strategic Commissioning Manager for Carers Services, Derby City Council, Corporate and Adult Services E-mail: [email protected] Telephone: 01332 255527

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Box 3 Derbyshire County Council Carers’ Emergency Plan

The County’s newsletter includes sections at the back: Record of Carer Details, Nominated Emergency Contacts, Contingency Plan.

Below are the main questions in the latter two sections.

 Does the cared-for person require some kind of supervision 24 hours a day? If no, please provide the times when you carry out essential caring duties or are required to support the cared-for person, and a summary of what you do in each case. (There follows a grid, days of the week down one axis, morning afternoon,evening, night down the other.)  Please provide the details of up to three people who need to know if you are unable to undertake your ordinary caring role and may be able to provide support to the cared for person in an emergency.  What kind of things do you do to support the cared-for person?  What support is available for you in your caring role (financial, breaks, help from others (paid or unpaid?). Are there other carers involved? Do you already have any contingency plans in place in case you are unable to provide your regular support for any reason?  What do you feel are the positive aspects of your role as a carer? What would maintain those positive aspects should you be unable to provide care for any reason? For example, regular updates on the situation of the person you care for, if you are not able to be with them.  Do you feel your caring role affects your other commitments (work, education, family etc) or leisure time? Please tell us how.  Please also tell us if there are things you would like to be doing but your caring role means you are unable to at present.  Please tell us if you feel there are any ways your physical, mental or emotional health is affected by your caring role.  If you feel an assessment of your needs as a carer would be appropriate, please tick the box. 38

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Contact: Claire Raw Project Manager (Carers/Commissioning), Adult Social Services, Derbyshire County Council, Room F14 Adult Social Services, County Hall, Matlock, Derbyshire, DE4 3AG Telephone 01629 532202 [email protected]

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Box 4 Leicestershire County Council Carers Development Workers

The specification for the Blaby district worker describes the overall aims as follows:  To be a local resource for carers for advice, information, support and sign-posting  To identify opportunities for and barriers to development of local support for Carers  To facilitate local Carers Forums to raise awareness of local carers issues and enable dialogue amongst carers and between carers and local Providers and decision makers  To support the development and where necessary, the maintenance of local Carers Groups  To support carer involvement in policy and planning activities and, enable consultation between local carers and the Leicestershire County Council

The specification also states that information promotion, identification of carers and direct work with individual carers (including administering Carers Grant applications) is part of the role.

Contact: Pat Fraser, Planning and Development Officer, Adult Social Care County Hall, Glenfield, Leicester LE3 8RL 0116 30 57415 [email protected]

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Box 5 Derby City Council Carers’ Discount Card (operational December 2009) Derby City Council is currently commissioning a Carers Discount Scheme.

The core package will include:

Bespoke member brochures, for example a six-page A5 full colour brochure with pop out membership card. A branded web site Unlimited access to the Lifestyle website (the website offers a wide range of discounts from shops and suppliers, as provided for staff discount schemes) Unlimited use of all Lifestyle benefits Access to ‘Lifestyle Extras’ scheme [offering up to 30% discount on online purchases] Access to green and ethical benefits Seasonal promotions The latest offers facility Monthly competition – is your card a winner? Summary of spend for key areas including vouchers, cinema, bowling, travel together with the most popular offers searched.

The proposal has been market tested with carers groups and representatives of local organisations. Full support has been given, particularly from carers, many of whom have expressed a keen interest in the potential for using the Carers Discount Scheme to help with the cost of holidays and short breaks.

Contact: Marilyn Hambly, Strategic Commissioning Manager for Carers Services, Derby City Council, Corporate and Adult Services E-mail: [email protected] Telephone: 01332 255527

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Box 6 Lincolnshire County Council Carers’ Personal Budgets

The Carers’ Personal Budget scheme centres on an outcome-based assessment and support plan, underpinned by a Resource allocation System, all developed jointly with carers.

The carers assessment tool can be completed online with a resource allocation calculator built in. This is then sent to the applicant as a completed pdf file.

Carers use their allocation, paid through a direct payment for the outcomes that have the greatest impact on their life.

Examples of the usage of personal budgets in Lincolnshire include breaks with or without the person being cared for (including holidays and days out), holistic treatments and leisure/hobby activities and equipment.

Contact: Sarah Oliver, Carers Commissioning Manager, Lincolnshire County Council, Orchard House, Lincoln LN1 1BA 01522 554214 [email protected] Webpages\; http://www.lincolnshire.gov.uk/section.asp?catid=8969&docid=51759 http://www.lincolnshire.gov.uk/section.asp?catid=22188

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Box 7 Lincolnshire County Education, Employment, Leisure Council and Learning Scheme (EELLS) (project start date January 2010)

This project is based on the appointment of a dedicated EELLS coordinator who will be part of the Lincolnshire Carers and Lincolnshire Young Carers Partnerships (including the Carers Training Partnership and the Carers Employment Group). Tasks include:  To develop and promote a Lincolnshire Carers EELLS scheme, working with carers to understand what is important to them in relation to accessing education, employment, leisure and learning.  Work with local and national providers to source a range of leisure, education, training and employment options for carers to access.  Provide for the specific needs of carers in relation to their leisure, education, training and employment needs as per individual carers assessments.  Negotiate and co-ordinate with providers day breaks and pamper days for carers.  Investigate the purchase of group memberships for leisure activities that carers could benefit from.

Contact: Sarah Oliver, Carers Commissioning Manager, Lincolnshire County Council, Orchard House, Lincoln LN1 1BA 01522 554214 [email protected]

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Box 8 Northamptonshire County NHS Support Demonstrator Site Council

Objectives (selected) Joint planning/commissioning  Identified Carers Health Lead within the PCT, working with Nene Commissioning, GPs and Provider Services  Joint Carer Commissioner - co-ordinate developments and develop health individual budgets for carers  Carer Assessment SWs/Carer Development SWs - stimulate engagement and partnership working

Professional awareness and development  CASWs - map, develop and implement carer pathway; roll out single assessment process into primary care and deal with pressure points; identify information sharing issues and implement protocols currently being developed; run (with carers) healthcare professionals’ carer awareness training and identify issues. Priorities – long-term conditions, primary care, access to physical health services for people with mental health problems, BME communities  Audit health/social care information systems for carer related data, e.g. QOF registers; explore ways to record and flag up carers’ information  Run publicity campaigns to identify ‘hidden’ carers + staff who are also carers for target initiatives  Work with the County Council to identify and support carers who are at risk of abusing or being abused

Information strategy  Promote Caring Northants website for information/support for carers and professionals; project updates; information on shared practice  Update Carers Directory and Carers Information Pack 44

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected]  Create carers database, and information and advice line

Healthier carers  Primary care mental health Wellbeing Teams to target carers and accept direct referrals from CASWs/CDSWs/CDWs.  Link this project directly with patients and carers already identified in Pro Active Care to provide support and assistance for independent living  Recruit current/former carers as trained, accredited peer support  Promote social enterprise opportunity for former carers to deliver practical support, particularly crisis and ‘respite’ support, including emergency ‘respite at home’ service

Contact: Maureen Jerram, Northamptonshire County Council, County Hall PO Box 177, Northampton, NN1 1AY Telephone: 01604 237680 [email protected]

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Box 9 Nottinghamshire County Breaks Demonstrator Site Council (project operational from November 2009)

Partnership between:

o local carers and carers’ groups o Nottinghamshire County Council o NHS Nottinghamshire County and Bassetlaw Primary Care Trust o 3rd sector colleagues o the University of Nottingham

Aim: to develop more personalised carers’ breaks services through engaging with carers to shape breaks’ services. This will involve evaluating existing services and exploration / testing of new initiatives:

o Joint & Separate Breaks for Carers Regular respite support for both carers and cared for people through the use of befrienders

o Community Champions a. Carers in Asian Communities - volunteers acting as advocates and mentors to Asian carers b. Travelling Communities - Health Trainer identifies carers on Traveller site and signposts to existing services or works with them to design a break service

o New Dementia Initiatives a. Tailored joint / separate breaks within rural communities b. Testing services which enable people to remain at home during emergency situations, alongside community mental health team c. ‘Side by Side’ service matches person with dementia with a volunteer befriender 46

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] o Extended Breaks’ Services For carers of people with mental health needs e.g. joint holiday opportunities

Contact: Penny Spice, Service Manager for Carers, Adult Social Care and Health, Nottinghamshire County Council, County Hall, West Bridgford, Nottingham NG2 7QP Telephone 0115 9772034 Email [email protected]

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Box 10 Derby City Council Breaks Demonstrator Site (operational January 2010)

Objectives  To establish a carers breaks ‘choose and book’ reservation system, including a website option. The system will be available for direct access by carers, and for access by GP’s and other health professionals, and by voluntary sector organisations supporting carers.  To widen the range of carers breaks options in conjunction with NHS Derby City and to improve access arrangements. New services will aim to reduce stress amongst carers and improve health. If required, help will be provided to enable joint attendance by the carer and the cared for person. Examples of new services include individual carers breaks budgets, ‘stress buster’ events, free access to the Council’s ‘Passport to Leisure’, and a free ‘Valuing our Carers’ discount scheme that will enable up to 8,400 carers to obtain discount from a range of retailers when purchasing travel, holidays, sports and leisure activities.  To establish a new Carers Information Prescription Service that will operate from GP practices and health centres. The service will provide information about carers breaks and other support services to carers, particularly hard to reach carers and those not normally in touch with key support services. The service will include a new ‘barefoot’ information service to be offered by trained local carers and ex carers working as volunteers.  To establish a community enterprise that will enable carers and ex- carers [with training and support] to undertake surveys of the carers accessing the breaks project, so that carers’ experiences and views can help measure project outcomes. Contact: Marilyn Hambly, Strategic Commissioning Manager for Carers Services, Derby City Council, Corporate and Adult Services E-mail: [email protected] Telephone: 01332 255527

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] LOCAL AUTHORITY WEBSITES – CARERS PAGES

DERBYSHIRE COUNTY COUNCIL http://www.derbyshire.gov.uk/Social_health/carers/

DERBY CITY COUNCIL http://www.derby.gov.uk/HealthSocialCare/SocialServices/GeneralSupportCare/Ca rerSupport/

NOTTINGHAMSHIRE COUNTY COUNCIL http://www.nottinghamshire.gov.uk/home/social_care/carers.htm

NOTTINGHAM CITY COUNCIL http://www.nottinghamcity.gov.uk/index.aspx?articleid=3213

LEICESTERSHIRE COUNTY COUNCIL http://www.leics.gov.uk/carers

LEICESTER CITY COUNCIL http://www.leicester.gov.uk/your-council-services/social-care-health/carers/

RUTLAND COUNTY COUNCIL http://www.rutland.gov.uk/pp/gold/viewGold.asp?IDType=Page&ID=17757

NORTHAMPTONSHIRE COUNTY COUNCIL http://www.northamptonshire.gov.uk/en/councilservices/asc/services/carers/Pages/ default.aspx

LINCOLNSHIRE COUNTY COUNCIL http://www.lincolnshire.gov.uk/section.asp?sectiontype=listmixed&catid=8969

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] APPENDIX 1

Carers at the heart of 21st-century families and communities “ A caring system on your side. A life of your own.” (HM Government, June 2008) (The national carers strategy)

The vision: by 2018  carers will be respected as expert care partners and will have access to the integrated and personalised services they need to support them in their caring role;  carers will be able to have a life of their own alongside their caring role;  carers will be supported so that they are not forced into financial hardship by their caring role;  carers will be supported to stay mentally and physically well and treated with dignity;  children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive, to enjoy positive childhoods and to achieve against all the Every Child Matters outcomes.

Weblink: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyA ndGuidance/DH_085345

Resources on carers and health

The current leading item for primary health care is the Princess Royal Trust for Carers and the Royal College of General Practitioners document “Supporting Carers: an action guide for general practitioners and their teams”. This is particularly useful for the evidence base and good practice examples. It includes a self- assessment checklist for practices. http://www.carers.org/professionals/health/articles/carers-in-practice- rcgp,1792,PR.html

Royal College of Psychiatrists

The RCPsych’s Partners In Care campaign from 2005-2006 produced a number of short leaflet-style resources, including checklists for users, carers and staff – and a guide to the confidentiality issue. http://www.rcpsych.ac.uk/campaigns/previouscampaigns/partnersincare.aspx

Social Care Reform: Personalisation

The Department of Health has a website covering most of the main documents relevant to this topic: http://www.dh.gov.uk/en/SocialCare/Socialcarereform/Personalisation/index.htm

It includes:  Introduction to Personalisation  Revised guidance on eligibility criteria (consultation)  Putting People First personalisation toolkit  Common Assessment Framework for adults  Transforming Adult Social Care circulars  Individual Budgets evaluation reports (including the specific one on carers

The Princess Royal Trust for Carers has published “Putting People First Without Putting Carers Second – making personalisation a reality for carers”, available at: http://static.carers.org/files/putting-people-first-09-individual-pages-4069.pdf

Comprehensive Carer Support model (Princess Royal Trust for Carers, 2008)

Brokerage Housing Emotional support support & Access to counselling work/ training Advocacy Identify & include Access to Access to benefits health & Mentally Not well being & physically financially services well; treated disadvantaged Peer and with dignity community support Caring support & Recognised Carer Enjoying a Breaks training & supported life outside as expert caring Information care partner Children thriving, Emergency support protected from Carers inappropriate Changes & shaping caring roles policy & transitions services Whole family support Activities Education & clubs & 1:1 support

Commissioning for Carers (2009)

(A joint production by ADASS, Afiya Trust, Carers UK, IDeA, The NHS Confederation, Local Government Association, Crossraods Care and the Princess Royal Trust for Carers)

This document cross-references to:  World Class Commissioning  The outcomes framework  The comprehensive carer support model.

It encourages commissioners to do the following.  Plan for carers within all area needs assessment and commissioning strategy work.  Promote choice and control for carers.  Develop a care pathway for carer support.  Consider the supply side issues (market development).

There is a full list of outcomes framework descriptors for carers (more comprehensive than in these toolkit appendices) and a list of policy drivers including a range of health issues, including continuing health care and hospital discharge.

The document is available at: http://www.idea.gov.uk/idk/core/page.do?pageId=13255730

IDEA Beacons scheme – supporting carers

The website includes a self-assessment tool relating to progress with local carers strategies: http://beacons.idea.gov.uk/idk/core/page.do?pageId=7947097

The supporting carers self-assessment tool helps local authorities identify areas the Beacon councils think need to be covered by an effective multi-agency strategy to support carers. Although it has been argued that the new outcomes framework for social care makes the Beacons tool out of date, it can still be a useful guide, when taken in conjunction with the outcomes framework and the PRTC comprehensive carer support model.

Strategic Shift To Prevention – assessing the strengths and challenges (a Putting People First – Transforming Adult Social Care publication) (DH/CSIP/DWP, 2008)

This document is a self-assessment tool designed for authorities to support a systematic approach to prevention and early intervention. It could also be applied as an analytical tool for carers strategies. Two aspects of the introductory section of toolkit are of interest, the framework of categories of prevention, and the list of domains to be assessed. These are reproduced below.

“The term prevention can mean many different things to different people. It is therefore important to have a clear framework. The following framework is helpful as it has a broad focus. It identifies three categories: o Primary prevention / promoting wellbeing: this is aimed at people who have no particular social care needs or symptoms of illness.  The focus is therefore on maintaining, independence, good health and promoting wellbeing. Interventions include combatting ageism, providing universal access to good quality information, supporting safer neighbourhoods, promoting health and active lifestyles, delivering practical services etc. o Secondary prevention/early intervention: this aims to identify people at risk to halt or slow down any deterioration, and actively seek to improve their situation.  Interventions include screening and case finding to identify individuals at risk of specific health conditions or events (such as strokes, or falls) or those who have existing low level social care needs;

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] o Tertiary prevention: this is aimed at minimising disability or deterioration from established health conditions or complex social care needs.  The focus here is on maximising people’s functioning and independence through interventions such as rehabilitation / enablement services and joint case management of people with complex needs.

The key message is that interventions are required across the whole spectrum of need.”

The nine domains.

1. Vision

2. Leadership

3. Whole Systems Working

4. Involvement

5. Service Design

6. Service Delivery

7. Commissioning

8. Sustainability

9. Monitoring and Quality

The document is available at: http://www.dhcarenetworks.org.uk/Prevention/

Outcomes and performance framework (Commission for Social Care Inspection, 2008) http://www.cqc.org.uk/_db/_documents/8032-CSCI-PerAss-Outcomes-2.pdf

The outcomes framework has been very influential in encouraging councils to view their work with carers in relation to the seven outcome domains.

Examples in relation to carers are given below. Outcome 1 Improved Health and Wellbeing

“People in the council area have good physical and mental health. Healthier and safer lifestyles help lower their risk of illness, accidents and long-term conditions. Fewer people need care or treatment in hospitals and care homes. People who have long-term needs and their carers are supported to live as independently as they choose, and have well-timed, well-coordinated treatment and support.”

Example of outcomes for carers: “carers are treated with respect, and their health and wellbeing needs are addressed in care plans”.

Outcome 2 – Improved Quality of Life

“People who use services and their carers enjoy the best possible quality of life. Support is given at an early stage, and helps people stay independent. Families are supported so that children do not have to take on inappropriate caring roles. Carers are able to balance caring with a life of their own. People feel safe when they are supported at home, in caring homes and in the neighbourhood. They are able to have a social life and to use leisure, learning and other local services.”

Examples of outcomes for carers: “carers are treated as expert partners and their quality of life is supported equally to those they care for”.

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] Outcome 3 – Making A Positive Contribution

“People who use services and carers are supported to take part in community life. They contribute their views on services and this helps to shape improvements. Voluntary organisations are thriving and accessible. Organisations for people who use services and carers are well supported.”

No carer-specific outcome descriptions.

Outcome 4 – Increased Choice and Control

“People who use services and their carers are supported in exercising control of personal support. People can choose from a wide range of local support.”

Examples of outcome for carers: “ carers are supported to balance care with a life of their own”.

Outcome 5 – Freedom from Discrimination and Harassment

“People who use services and their carers have fair access to services. Their entitlements to health and care services are upheld. They are free from discrimination or harassment in their living environments and neighbourhoods.”

No carer-specific outcome descriptions.

Outcome 6 – Economic wellbeing

“People who use services and their carers have income to meet living and support costs. They are supported in finding or maintaining employment.”

Example of outcomes for carers: “the level and flexibility of carers’ services enable many to maintain or seek employment where they choose to do so”, “carers’ needs for income and employment are recognised in planning support. They are offered

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected] skilled advice to help reduce financial advice to help reduce financial hardship caused by their caring role”.

Outcome 7 – Maintaining Personal Dignity and Respect

“People who use services and their carers are safeguarded from all forms of abuse. Personal care maintains their human rights, preserving dignity and respect, helps them to be comfortable in their environment, and supports family and social life.”

Examples of outcome for carers: “ carers are provided with training opportunities to promote their skills and knowledge”, “families and carers have support that is based on partnership”.

Miscellaneous research reports

“Local authorities’ use of the Carers Grant” Department of Health 2009. This is the report of a study undertaken by the University of Leeds that aimed to get a better understanding of how local authorities in England spent their Carers' Grant allocations between 2005 and 2007 and how it enabled them to improve support for carers in their area. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyA ndGuidance/DH_103807

“Review of respite and short breaks for carers of people with dementia” Social Policy Research Unit (York University) for the Department of Health 2004 http://php.york.ac.uk/inst/spru/research/summs/respitedementia.php

“Family carers on the margins: experiences of assessment in mental health” University of Sheffield for the NHS Service Delivery Organisation 2008 http://www.sdo.nihr.ac.uk/files/project/53-final-report.pdf

Author: Paul Mansfield, Carers Project Manager, East Midlands Joint Improvement Partnership [email protected]