A report on carers needs and services

Jan-Mar 2015

Carers in Oxfordshire

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CONTENTS OF THIS REPORT

INTRODUCTION 03 THANK YOUs 04 EXECUTIVE SUMMARY 05

Project aims 05 Support carers value and access 06 Support for carers by Service User group 07

a. Carers of people with learning disabilities 07 b. Carers of people with mental health issues 08 c. Young carers 09

Overall 10 1. INTRODUCTION 11

Who we are and why we are doing this project 11 Summary profile of carers in the region 11

2. NEEDS AND GAPS 13

Methodology 13 Response 13 Results 13 Analyses 14

3. CARERS BREAKS GRANT 23

How the grant is used by GPs 23 How the grand is used by carers 24

CONCLUSION 25

Training 25 Social events 25 Alternative care 26 Information and support 26

APPENDIX 1: Profile of carers in Oxfordshire 27 APPENDIX 2: Service in the region 32

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Introduction

Healthwatch Oxfordshire is an independent organisation, established under the Health and Care Act 2012. Like Healthwatch organisations all over England, it exists to find out about people’s experiences of publicly funded health and social care, and to use that information to bring about improvements to these services in its local area. It gives the people of Oxfordshire a powerful voice in shaping decisions affecting vital services. Healthwatch Oxfordshire sets aside £25,000 a year to fund projects which enable community groups and community based organisations to undertake small scale service evaluation projects with particular groups of services users. The aim of these studies is to gather intelligence about people’s experience of care, particularly from seldom heard groups, and to produce reports which shed light on those users’ experiences of services. Where appropriate, these reports contain recommendations from participants, or from the report authors, about how such services might be improved. They are also a means to celebrate examples of excellent care. The views and opinions expressed in this report are those of the participants in the study, and are reported by Guideposts. Healthwatch Oxfordshire will ensure that local providers and commissioners receive the report, and that they are alerted to the recommendations this group has made, and to the experiences the project participants describe. We will also follow up with those commissioners and providers on a regular basis, over time, in order to see what changes they make as a result. Finally we will report to the report authors, through our website and via the local media on actions taken by providers and commissioners to deliver the report’s recommendations. Where necessary, we will also highlight that no action has been taken, in order to continue to try and improve the efficiency and effectiveness of local services for local people.

Rachel Coney – Chief Executive

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This report could not have happened without the

help and support of carers and community

organisations across Oxfordshire.

Thank you to:

All the carers and practitioners who took the time to speak to us;

Community organisations who facilitated / supported our project:

South and Vale carers centre; Oxfordshire Rethink Mental Illness OxFSN

Healthwatch Oxfordshire for funding the project and providing stakeholder guidance about the local community;

Thank

you

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Executive summary

Carers needs vary widely, impacted by a number of factors: location,

relationships, access to work / education and other services all have an effect

on the impact that a caring role has on an individual. This report presents the

findings of an investigation into the needs of carers in Oxfordshire, carried out

by Guideposts Trust and funded by Healthwatch Oxfordshire. We have

focused particularly upon carers for people with: learning disabilities; people

with mental health issues; and young carers. The purpose of the investigation

was to establish what gaps / needs exist in the county, taking the perspective of

carers views of what is needed. It is not an evaluation of existing services;

Guideposts intention was to explore and gain an understanding of issues, and

provide an evidence base for future work to support carers. It is Healthwatch’s

intention to use this information for discussion with commissioners and other

stakeholders; aiming to create action from the findings.

OUR PROJECT AIMS:

Provide an up-to-date profile of carers in the region (focused particularly on carers of people with mental health issues and learning disabilities; and young carers)

Identify services that are currently available to carers in the region Identify what carers feel are the gaps in the services provided in the county Show how carers use the Carers Grants in the region for a carers break Show how carers describe their needs in short and long term breaks and how they feel

this is being met in Oxfordshire Show how the needs of young carers are currently being met and where they are not.

Evidence their experiences/challenges and needs.

In this Executive Summary, we introduce some key results, and then discuss the overall picture for each of our subgroups – carers of people with a learning disability, carers of people with a mental health issue, and young carers. IN BRIEF: What we did: We designed a survey based on a literature review and a scoping exercise conducted in 2014. We also interviewed carers individually, held focus groups, and interviewed professionals working with multiple carers. IN BRIEF: What we asked: We asked carers to rate how important they thought services were, and whether they could access these services (i.e. they could both find and afford services that they were eligible for). Where services are important but scarce, this constitutes a gap (this research was conducted prior to the implementation of the Care Act, which will provide a legal framework for ensuring that carers eligible needs are assessed / met).

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Support carers value and access

IN BRIEF: What we learned: On this basis, we identified some key gaps:

Among the more highly valued services, holidays are the least well accessed. 61% of carers saw specialist holiday provision as important, but 68% could not access a holiday for the person they cared for, and 56% could not access a holiday for them and the person they cared for.

80% of carers valued social activities for the person cared for (which give carers a break).

Interviews and focus groups showed that while most carers can find something – as shown by our data - all would like there to be much more, and this is a key priority.

Social activities that the carer can also attend are important to 63% of carers.

66% of carers value alternative care out of the house during the day. Interviews and focus groups showed that while many carers can find something, all would like there to be much more, and that this is a key priority. In addition, the Council’s Big Plan for learning disabilities proposes changes in day care, so this access may be reduced in the near future.

Professional care at home is more highly valued than our data at first suggests. 9 out of 10 carers of people with dementia value it in the day, and 5 out of 10 at night – dramatically more than other groups. Because these carers of people with learning disabilities are so overrepresented in our survey, average demand in our sample may be lower than it would be in the population as a whole.

The other highly valued services – information, support groups, emergency support, and help filling out forms – are relatively well accessed. There is one exception: no emergency support is available when the person cared for is under-18.

In addition, mental health carers have less good access to information, as discussed below.

IN BRIEF: What this suggests: Based on what carers told us commissioners/funders could consider:

How the needs identified by carers could be met to support carers well-being and to maintain their caring role:

How holidays could be better provided/supported; How social activities and out of home care can be provided to ensure carers (short)

breaks; How emergency support could be expanded to support people caring for under-18s.

More information could be sought on the impact of reducing day provision for people with learning disabilities.

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Support for carers by Service User group Our project brief included a special focus on carers of people with learning disabilities or a mental health issues, and young carers. In this section we review all the information discussed in this report, to give a picture of the needs of each subgroup.

A. Carers of people with learning disabilities We surveyed 37 carers of people with learning disabilities, held three discussion groups with this group, and had one professional interview. Information and support groups were highly valued, but also well provided. IN BRIEF: What we learned: The following popular services were the key gaps:

91.9% (n=33) saw ‘social events for the person you care for’ as

important

81.8 % (n=30) saw ‘Out of house care, during the day (e.g. day centres)’ as

important

78.4 % (n=29) saw ‘Specialist holiday for you and the person you care for’ as important

60% (n=22) of carers could find care out of the house or a holiday and 80% (n=29) could find social events, but we were repeatedly told that people could not find enough. In addition, concerns were raised about the Big Plan for learning disabilities, which proposes changes to day centre provision. We held three discussion groups with carers of people with learning disabilities. All three groups of carers of people with learning disabilities raised the need for activities for the person cared for, and all raised the importance of social exchange as a key aspect of activities and outings. IN BRIEF: What this suggests: Based on what carers told us commissioners/funders could consider:

What can be done to ensure that people with Learning Disabilities are not at risk of being socially isolated as a result of changes to provision.

What is already available? Out of house care: The Camden Society provides 3 services for people with learning disabilities – Woodlands, the Poplars and the Haven – and Guideposts provides 1, GLADS. Oxfordshire County Council (OCC) provides 16 centres for those with learning disabilities. Combined with their Health and Wellbeing Centres (below) this is the bulk of available provision for this group, and the results of the Big Plan consultation are therefore crucial. OCC provide also provide seven Health and Wellbeing Centres. These are generalist day centres.

Social activities The majority of social activities for the person cared for to attend alone are for children and young people - we identified 15 providers of a youth club or similar; often these were for people with any form of disability. There are three clubs for older people with learning disabilities, and no holiday provision. Enrych and Crossroads both offer flexible services that might enable the person cared for to take part in a mainstream social activity.

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Other The table below shows service provision across the county for carers of people with learning disabilities.

Support groups

Out of home day care

Out of home day care at residential homes

Respite care

Oxfordshire 5 26 7 3

Cherwell 1 7 1 1

Oxford 2 4 1 1

South Oxfordshire 0 7 2 1

Vale of White Horse 1 4 3

West Oxfordshire 1 4 0

B. Carers of people with a mental illness Only 13 carers of people with a mental illness answered our survey. We supplemented this information with a discussion group and interviews with carers, and two interviews with professionals. In discussion, carers in this group discussed the need for help to cope with challenging behaviour and to understand the condition of the person that they cared for, preferably on a personalised basis. IN BRIEF: What this suggests: Based on what carers told us commissioners/funders could consider:

What can be done to better support carers of people with mental health issues and challenging behavior of particular interest is training and strategies for providing support.

IN BRIEF: What we learned: The following popular services were the key gaps:

This group rated information as very important, and are currently less able to find it than other

groups, with 40% (n=6) unable to access the information that they need.

84.6% (n=11)said that social events for the person cared for were important.

Carers in this group also rated social activities for the person cared for as very important. Here, a particular concern that came up in discussion was that the person cared for was often physically and mentally very able, and uncomfortable in traditional ‘care’ settings. Finally, carers in this group were unanimous that emergency support was important, and found it harder to access than other carers. From discussion groups and interviews, we suggest that this may be because for this group ‘emergency support’ means help when the person they care for is in crisis, rather than help if they are unable to care.

This group rated emergency support as very important, and are currently less able to find it than other groups, with 40% (n=6) unable to access the support

they need.

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Both our expert informants highlighted the importance of respite. Overnight care out of the house was not rated highly on our survey, but this could have been due to the difference in wording. The need for respite was also raised in discussion groups, and there was concern over whether the person cared for would want to go. IN BRIEF: What this suggests: Based on what carers told us commissioners/funders could consider:

What can be done to better support the specific needs of people who are caring for people with a mental health issue and how this can ensure personalized support the person they are caring for to fulfill their particular needs.

What is already available? Rethink is the main provider of information and training courses for this group. Restore and Mind are the main commissioned providers of activities/support that incorporates a social element. Respite care is very limited: we only found Amber House (specialist) and the Cherwood House Care Centre (generalist) publically advertised. Other services:

Support groups

Out of home day support

Out of home day support at residential homes

Oxfordshire 12 16 5

Cherwell 3 3 2

Oxford 4 5 1

South Oxfordshire 3 3 1

Vale of White Horse 1 3 1

West Oxfordshire 1 2 0

C. Young carers Only 6 young carers responded to our survey. This is proportionate to our sample size compared to the whole population, but we should be cautious using this data to generalise. To supplement this, we held a discussion group and spoke with a key professional working with young carers. A good number of services were seen as important by four or five of our six respondents: Professional care provided at home, daytime; Professional care provided at home, at night; Out of house care, daytime (e.g. day centre); Out of house care, overnight; Social events for the person you care for; social events for you and the person you care for; specialist holiday for the person you care for; specialist holiday for you and the person you care for; Information; Training for care tasks; Help to continue employment or education; and support groups. IN BRIEF: What we learned: For this reason, we stress that the concerns of young carers have a great deal of overlap with those of adult carers.

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Our discussion group and professional interview highlighted some areas specific to young carers: Breaks and socialising

The group that we spoke to unanimously endorsed the activities they enjoyed through their young carers group. They emphasised the social aspect.

Both our discussion group and the professional stated that short breaks were better than long trips as this was easier to fit in with care

The professional expressed concern that group meetings were not regular enough, and that there were not enough groups: more paid staff are needed for this to happen. This particularly affects the far South West, East and South East of the county.

Trips could also be better advertised, and a centralised website was suggested. Young carers that we spoke to had heard about available services through their schools.

Current opportunities for young carers to take a break with other young carers are shown below. 11 of these are Spurgeons (current provider of commissioned young carers services in Oxfordshire). The other three are the Didcot early intervention hub, the Abingdon early intervention hub, and South and Vale Carers Centre. Some schools host young carers groups.

Groups

Oxfordshire 14

Cherwell 4

Oxford 3

South Oxfordshire 2

Vale of White Horse 3

West Oxfordshire 2

Support in school This was felt to be poor by young carers we spoke too. Issues included breaches of

confidentiality, lack of anyone to turn to, feeling hassled rather than helped, and being pulled out of lessons for discussions.

Spurgeons are working with schools to help them meet standards. A list of schools with a carers award for their work is given below:

Banbury Academy Bartholomew School Cheney School Didcot Girls School Faringdon Community College The Henry Box School Lord Williams’s School Fitzharrys School

IN BRIEF: What this suggests: Based on what carers told us commissioners/funders could consider:

What can be done to provide more regular social support to young carers and how more funding can be provided to broaden the reach of these groups.

Overall Our discussions with carers suggest a number of areas where there are gaps in provision, both across all groups and for specific groups of carers. This report goes on to provide more detailed analysis of our discussions and in conclusion we draw these themes in to some key discussion points that could be used to raise these issues with commissioners.

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1. Introduction

Who we are and why we are doing this project. Guideposts Trust is a charity that provides care, support, information, advice and guidance in the community. As an organisation our ambition is to support people to fulfil their aims and aspirations, and offer opportunities for people to make informed decisions about how they achieve this.

In Oxfordshire Guideposts Trust and partners are already providing support to carers in a variety of ways across the county. To ensure that we offer quality support in the way that carers need and wish it to be, Guideposts have completed a project funded by Oxfordshire Healthwatch.

This project provides a current profile of carers in Oxfordshire and aims to explore their needs and experiences in their caring role (with a focus on carers of people with mental health and learning disabilities; and young carers).

To complete the project Guideposts conducted a survey based on a literature review and a scoping exercise which was distributed across the region. Guideposts also interviewed carers individually, held focus groups and interviewed professionals working with multiple carers.

Summary profile of carers in the region A detailed analysis of the profile of carers in Oxfordshire is available in Appendix 1 including young carers and the ‘cared for’ analysis.

According to the most recent Census (2011), 60,295 people are providing unpaid care in Oxfordshire1. Only 11,039 of these are registered as a carer with their GP.2 The census allows us to disaggregate Oxfordshire carers by a number of categories.

A. Demographic characteristics

1 Office for National Statistics, 2011 2 The OCCG Oxfordshire Carers Strategy 2013-16 Annual Report (Sept 2014)

Time spent caring (hrs per week)

19 or less: 72%

20 – 49: 10%

50+ : 18%

Gender

Female: 58%

Male: 42%

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It is possible to distinguish young carers within the 2011 census data as it is disaggregated by age. The youngest group is 0 – 24 years. This group make up 5 – 6% of carers in most districts, rising to 9% in Oxford. See Appendix 1 for further analysis.

Age (yrs)

0 -24: 6%

25 – 49: 32%

50 – 64: 38%

65+ : 24%

Ethnicity

White British: 89.6%

Asian/Asian British: 3%

Other white: 3%

White Irish: 0.7%

Black/African/Caribbean/Black British: 0.03%

Other ethnic group: 0.03%

Mixed/multiple ethnic group: 0.1%

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2. Needs and gaps Questions: What do carers feel are the gaps in the services provided in the county? What do carers need in long and short term breaks? How is this being met?

Methodology We sent a survey to carers through over 50 organisations, including carers’ groups, service user organisations, churches, schools and GP surgeries. The survey can be found in Appendix 1. We held six discussion groups, some before the survey, which helped us to refine the questions, and some after. We also held 11 interviews with carers, and 4 expert informant interviews with professionals working with carers in our special interest groups. Finally, we included open questions in our survey. All these forms of qualitative data allowed us to better interpret and expand on our quantitative results. It was necessary to use mostly closed questions to encourage survey responses, although optional open questions were included. This required drafting a list of possible services for carers to respond to. It was important that we listed services that were drawn from carer’s own views, and not from a policy agenda or at random. We therefore conducted a literature review of participatory literature that directly asked carers about their needs. There were 3 key documents from Oxford and 7 nationally, as listed in Box 3A. These questions were then refined through information from a pilot survey and early discussion groups.

Response 83 surveys were returned. Key demographic data is shown below. Some respondents skipped questions so %s do not add up to 100. Age groups are roughly proportionately represented. South and West Oxfordshire are slightly overrepresented. ‘Heavy duty’ carers, caring 50 hours or more per week, are hugely overrepresented. Carers of people with learning disabilities are also very overrepresented, and many are parent carers.

Results Table 1 and 2 summarise the responses to two multi-part questions:

1. Below are some possible services that could be provided for carers (some already are, some are not). How important are these for you? [Very, quite, not very, not at all]

2. Do you currently use any of the following? [Yes, No: I don’t want this, No: I can’t find this, No: I’m not eligible for this, No: it’s too expensive]

3A: Literature Oxfordshire Carers’ Strategy 2013 – 16 (2013)

Joint Oxfordshire Carers Strategy (2008)

Gatehouse, Godden, Haffenden and Sanders – Democratic Services (2006). ‘Who Cares? Scrutiny Review of Support for Adult Carers’.

Carers UK (2012) Sandwich Caring

Carers UK (2012) In Sickness and Health

Princess Royal Trust for Carers (2011) My Care: The challenges facing young carers of parents with a severe mental illness

PRTfC (2007) Supported to Care? Carers’ Views of Services

PRTfC (2009) Win-win: A new consensus on care and support

Yeandle/CIRCLE (2007) Diversity in Caring: towards equality for carers Eager et al (2007) Effective Caring: a synthesis of the international evidence on carer needs and interventions

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Table 1 on ppp xxx shows the percentage of carers that said each service was very or quite important. (The ranking is very similar if we only count ‘very important’.) Table 2 on pp xxx shows the percentage of carers that wanted a service, but could not access it. To calculate this, we discounted respondents who said ‘No, I don’t want this’, then found what percentage of the remaining respondents had answered ‘No’. Both tables also show the same figures for subgroups, grouped by the condition of the person cared for. Some carers fall in more than one category, and some into none. Note that where subgroups are small, the results should be treated cautiously.

Analysis This allows us to say which services are valued and which are poorly accessed. Where a service is both valued and poorly accessed, there is a gap in service provision. These figures require careful scrutiny alongside qualitative data. In this chapter, we consider each group of services in turn – “Alternative care”, “Breaks”, and “Information and support.” A brief overview of the main gaps is given below:

Among the highly valued services, holidays are the least well accessed. This includes both holidays for carers with the person cared for, and holidays for the person cared for alone (which is necessary for carers to take a break).

Social activities for the person cared for (which give carers a break) are a very highly valued service. Most carers can find this. However, interviews and focus groups showed that while most carers can find something, all would like there to be much more, and that this is a key priority. Social activities that the carer can also attend is a slightly lower, but still high, priority.

Similarly, alternative care out of the house during the day is less well accessed than our data suggests as carers would like more availability. In addition, the Council’s Big Plan for learning disabilities proposes changes in day care, so this access may be reduced in the near future. This is a highly valued service.

Professional care at home does not appear to be highly valued on average. However, it is very highly valued by carers of people with dementia, and the high numbers of carers of people with learning disabilities in our survey disguises this in the overall figures. There is some difficulty in accessing daytime care and severe difficulty accessing night-time care.

Emergency care, highly valued, is not available when the person cared for is under 18. Discussions showed that the adult emergency care is well known and appreciated. Carers of people with learning disabilities For this group, social events for the person you care for, care out of the house during the day and specialist holidays for the person you care for were even more important than for other groups, and take clear priority. Carers of people with a mental illness This group find information more important, and harder to find, than any other group. They also highly value social events for the person cared for. This group struggled the

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most to find emergency support, and in discussion it was clear that this meant support during a crisis for the person cared for. Although out of house care overnight was not rated highly, it was seen as important in discussion groups and by professionals: this could be a difference in wording. Young carers The six young carers who responded saw nearly all services as important, highlighting their overlap with the concerns of adult carers. Specialist concerns were short social break provision with other young carers, and treatment in schools.

We will now look at each set of services in more detail. A more detailed analysis of our three key subgroups is available in the executive summary above.

Table 1 Responses: Below are some possible services that could be provided for carers (some already are, some are not). How important are these for you? [Very, quite, not very, not at all]

Services are ranked by value from high to low.

Service % that said very or quite important

Physical disability (41)

Learning disability (36)

Mental illness (13)

Dementia (10)

Information 85.5% 90.2% 86.5% 92.3% 90%

Social events for the person cared for

79.5% 78.0% 91.9% 84.6% 70%

Emergency care 77.1% 75.6% 70.3% 100.0% 90%

Support groups 68.7% 70.7% 78.4% 61.5% 80%

Out of house care during the day

66.3% 58.5% 81.1% 76.9% 80%

Help filling out forms 63.9% 68.30% 73.0% 69.2% 70%

Social events for the carer & the person cared for

62.7% 63.4% 70.3% 61.5% 60%

Specialist holiday for the carer & the person cared for

61.4% 68.3% 67.6% 69.2% 40%

Specialist holiday for the person cared for

61.4% 56.1% 78.4% 53.8% 50%

Help with continuing education/employment

56.3% 51.2% 64.9% 61.5% 30%

Counselling 55.4% 56.1% 56.8% 69.2% 70%

`Training for care tasks 54.2% 58.50% 54.1% 69.2% 70%

In home day care 50.3% 46.3% 43.2% 69.2% 90%

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Out of house care at night 38.6% 31.7% 48.6% 30.8% 40%

In home night care 32.5 % 24.4% 35.1% 23.1% 50%

Table 2: Responses: Do you currently use any of the following? [Yes, No: I don’t want this, No: I can’t find this, No: I’m not eligible for this, No: it’s too expensive]

Services are ranked from the least available to the most available.

% of carers that wanted the service, and could not access it

Physical disability (41)

Learning disability (36)

Mental illness (13)

Dementia (10)

In home night care 83% 90% 90% 70% 86%

Counselling 68% 70% 90% 60% 25%

Holiday for the person cared for

68% 90% 60% 60% 100%

Out of house care at night 64% 60% 60% 60% 100%

Help to continue with education/employment

63% 60% 70% 60% 50%

Holiday for carer and the person cared for

62% 80% 70% 40% 57%

In home day care 61% 50% 60% 70% 37%

Emergency support 61% 70% 80% 40% 37%

Training 56% 50% 60% 60% 50%

Out of house care during the day

42% 40% 40% 40% 33%

Social events for the carer and the person cared for

36% 40.0% 30% 20% 43%

Help filling out forms 36% 40% 30% 20% 0%

Support groups 33% 40% 20% 40% 0%

Information 27% 30% 20% 40% 0%

Social events for the person cared for

27% 40% 20% 30% 25%

Analysis (1): Alternative care

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There were five services in this category:

A. Professional care provided at home, daytime B. Professional care provided at home, at night C. Out of house care, daytime (e.g. day centre) D. Out of house care, over night E. Emergency support

Four of these are effectively a form of ‘carers’ break’; in discussion groups, it was clear that carers needed alternative care or activities for the person they cared to have an effective break. The fifth, emergency support, gives carers peace of mind.

The quantitative data

Professional care at home during the day was one of the least valued services (50.3%), and at night was the least valued service (32.5%). However, this obscures an important difference. Of the 10 carers of people with dementia in our survey, 9 valued professional care at home during the day, and 5 valued it at night. The underrepresentation of this group in our survey means we are likely to be significantly underestimating the value of this service, as dementia carers are in fact a relatively large group. Night care was the least accessible service of all, which day care was moderate, with 61% unable to access it.

Out of house care during the day was moderately highly valued on average (66.3%), and highly valued by carers for people with learning disabilities (81.1%) and with dementia (80%). It appears to be moderately well accessed, with only 42% of carers unable to use a service. However, there are two important caveats to this. First, in interviews and focus groups we repeatedly heard that there was not enough availability. Therefore, while 58% of carers that want this service can find some provision, it is clear to us that most cannot find enough, and that this is a key priority. Second, the council’s Big Plan for learning disabilities proposes cuts to day centres. Therefore, this availability figure is likely to change for the worse in the near future. Our data strongly suggests that day care services should be seen as a crucial part of carers’ services, and that dividing the two is artificial from the viewpoint of carers.

Out of house care at night is one of the hardest services to access. It is also one of the least valued.

Emergency support is very highly valued (77.1%), especially by carers of people with a mental illness or dementia. Our data seems to suggest that access is relatively poor. However, this is due to the high number of parent carers of minors that responded to our survey. The county’s emergency scheme, administered by Carers’ Oxfordshire, does not cover under-18s. We found that it is well known and appreciated by carers who care for an adult.

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The qualitative data Below is a summary of points raised on the theme of alternative care in focus groups and interviews:

Analysis (2): Activities and breaks There section continues the theme of breaks for carers. The following four services were suggested:

1. Social events for the person you care for 2. Social events for you and the person you care for 3. Specialist holiday for the person you care for 4. Specialist holiday for the person you and the person you care for

Our pilot survey found that carers highly valued a holiday for themselves alone, too. However, in discussion it became clear that the constraint was finding alternative care, so carers needed overnight care (above) or a holiday for the person they cared for in order to take a break themselves. The idea of a ‘service’ to provide them with a holiday, other than alternative care, was confusing. For this reason, our survey asked about activities and holidays for the person cared for. The term ‘social events’ was used because in early discussions we found that this term was more relevant than ‘activity’ or ‘outing’.

Alternative care

Day centre services were seen as desirable, but often full.

Some saw day services as overly generalist and for all ages; one person praised their day service and one suggested competitive private provision.

2 groups raised in-home care, which for them meant either a few hours cover so that they could go out, or somebody checking in on the cared for at some point while they were away.

Interviewees that valued this service stressed that it was crucial to their own social life

Sometimes there had been trouble finding a carer even where funding was available. One interviewee stressed that when it comes to hands-on help, carers find themselves alone. Another pointed out that a foster assessment is required for somebody to stay overnight, preventing them hiring people they trusted

Interviewees had varied requirements from in-home care. Some needed the companionship for the person cared for, others the reassurance or assistance of somebody with relevant medical knowledge

Some respondents had difficulty finding respite care that the person they cared for would be comfortable with, which was a key concern. Lack of respite was raised by the two professionals and the carer group concerned with mental illness.

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The quantitative data

Social events for the person you care for were the second most highly valued service (79.5%), and particularly highly valued by carers of people with a learning disability (91.9%) or a mental illness (84.6%). They appear to also be the best accessed service. However, as with day care out of the house (above), in interviews and focus groups we repeatedly heard that there was not enough availability. This was also overwhelmingly the most popular response to our open survey question about services people would like to see. Therefore, while 73% of carers that want this service can find some provision, it is clear to us that most cannot find enough, and that this is a key priority.

Social events for you and the person you care for were moderately highly valued (62.7%), highest among carers of people with learning disabilities (70.3%). It is moderately well accessed, with 64% of carers able to find it. Again, qualitative data indicates that there is still demand for more activities in this category.

Specialist holidays, with the carer or without the carer, are both quite highly valued (important for over 60%) and scarce (not available to over 60%). All subgroups prefer a holiday for the carer with the person cared for, apart from carers of people with learning disabilities, who preferred a holiday for the person cared for alone. Responses to our open question showed that even where carers are able to pay for specialist holidays, the provision is not available.

The qualitative data: Breaks – alternative care, holidays, and activities Below is a summary of points raised on the themes above in focus groups and interviews. Social events

All three groups of carers of people with learning disabilities raised the need for activities for the person cared for.

All three groups of carers for people with learning disabilities raised the important of social exchange as a key aspect of activities and outings.

Two discussion groups raised a need for activities that could be used by carer and cared for, citing the need for things to be ‘fun’ and ‘stimulating’. Weekends would be particularly appreciated. The Yellow Submarines café model was praised.

Some interviewees raised difficulties finding a service that matched the cognitive capabilities of the person they cared for, where the person had no learning difficulties and they were concerned about finding something sufficiently stimulating. They preferred enabling at non-specialist activities.

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Analysis (3): Information and support Our survey asked about six support services:

A. Info about carers rights/services B. Help to complete forms (e.g. for benefits and personal budgets) C. Training for care tasks D. Help to continue your education or employment E. Support groups F. Counselling

The quantitative data

Information about carers rights and services was highly valued, seen as important by 85.5% of carers; and is the best accessed service, found by 73% of carers. At the end of our survey, we asked carers where they found information (they could choose more than one). 43% said ‘Online’, 33% said ‘Carers’ Oxfordshire’, 29% said ‘Other’, 27% said ‘Carer support groups’, 19% said ‘social services’, and 10% said ‘My GP’.

Help to complete forms is seen as moderately important, but is also fairly well accessed. Qualitative data suggests that some carers wouldn’t know what to ask, or didn’t know what they were entitled to until they were told, so it is possible that carers underestimate how much added value may be possible here.

Ideas included: o A buddy system o Music, drama and recreation groups o Schools inviting day centre users to see shows. o A facebook-style platform that could be used to informally arrange social

activities o A specialist scouts group o activities for older young people o A specialist playground

o Groups with more purposeful activities Holidays

Two discussion groups raised holidays for the person cared for. Mental health carers felt there was a gap here for them, including for basic overnight respite options. There were difficulties discussed about whether the person cared for would want to go.

While one respondent raised the need for more activities just for the carers, others emphasised that it is worrying to take a holiday away from the person cared for, or saw holidays as a family activity and did not relate to the idea that they might want a ‘service’ to go away alone.

Interviewees stressed how important it was that the person they cared for was given acceptable alternative care, or an enjoyable activity, if they were to enjoy a break properly.

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Training for care tasks is seen as important by relatively few carers (54.2%), but is more popular among carers of people with a mental illness (69.2%) and dementia (70%), who are underrepresented in our survey. It is moderately well accessed: 44% of carers that wanted training could find it.

Help to continue your education or employment is moderately highly valued and moderately poorly accessed, with 63% of carers saying they could not get this help.

Support groups are highly valued, seen as important by almost 70% of carers; they are also one of the best accessed services.

Counselling is not very highly valued, seen as important by 55% of carers. On the other hand, it is the second hardest service to access, with 68% of carers unable to use it; so for those carers that do value it, this is an important gap.

The qualitative data Below is a summary of points raised on the themes above in focus groups and interviews.

Information and help with forms

Several interviewees also received information through a group (often national) specific to the condition of the person they cared for

Those who had been helped to fill in forms saw it as crucial to them securing assistance.

Many carers stated in interview that they did not know what to ask for; or that they had not previously known what to ask.

Accountability and chain of command were seen as confusing, it would be helpful to have a single individual who could provide information for the case of the person you care for

Online information was used by some, but others found it confusing and would prefer to talk to someone

The problem of jargon was raised

Support groups

Sharing information about what you could apply for was a crucial function of support groups. Members repeatedly expressed that this had been transformative.

Some members also expressed appreciation for meeting people in the ‘same boat’

Training

Help with challenging behaviours needed

Difficulties are often unique: two interviewees expressed difficulties getting the specific advice they needed in generalist training sessions, and one suggested in-home training.

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Difficulties using services We also asked carers whether they had been prevented from using a service for any of the reasons below. The table shows the numbers that said yes.

(a) I could not arrange the transport. 11

(b) The timing was inconvenient 17

(c) The service was not suitable for the condition of the person I care for. 15

(d) The service was not suitable for the age or tastes of the person I care for. 17

(e) I did not have necessary internet access. 1

(f) The application process was too complex. 6

Inconvenient timing is perhaps inevitable. The high number of people stating that the service was not suitable for the tastes or condition of the person cared for matches our qualitative data: many respondents expressed frustration when the person they cared for was mentally very able. Discussion groups highlighted that transport concerns disproportionately impact carers who do not drive. Of the four survey respondents who commented on transport in our open questions, two could not drive.

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3. Carers’ break grant Question: How is the carers’ break grant used? Methodology: Secondary quantitative data from GP carers break

How the grant is used by GPs Since April 2014, GPs have had the authority to prescribe a ‘carers’ break’, a £600 grant to be spent on arranging a respite break. At the time of writing this report, this is under revision. However, the use of the grant provides useful information on the sorts of breaks that carers want. We analysed data available from OCC on GP Breaks applications from 4th April to 12th August. By 12th August, 790 applications had been made, of which GPs accepted 89% (703) and rejected 11% (87). Of these, 549 had been approved and sent to the direct payments team by the local authority. The value of these 549 approved applications was £421,800. It is possible to see a demographic break down of the 549 approved applications, but not of total applicants. This provides information on the carer’s district and the condition of the person they care for. Overwhelmingly grants are used by carers of older people or people with physical disabilities. There are also differences in distribution between districts.

Older person 52% Physical disability 20% Learning disability 9% Mental health 9% Not recorded 10%

Cherwell 27% (193) Oxford 25% (175) South 14% (99) Vale 20% (142) West 13% (93)

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How the grant is used by carers The minutes of consultations by OCCG raise some interesting themes about use. One major division noted in these minutes is between carers looking for a break alone and those who want to go away with the person cared for. For the former group respite is a concern, and the minutes note that there are limited options in Oxfordshire. On the other hand, it is noted that it needs to be possible for those who want to go away together to do so. Specialist providers of breaks and alternative care are therefore still key concerns. 12 of our survey respondents had been given a carers’ break, although 2 had not yet spent it. Of the 10 that had done so, 3 used it for regular short activities; 5 used it to go on holiday, one using a specialist holiday provider so that they could go with the person they cared for; and 2 spent it to visit their family. This highlights how valuable it is to have a grant rather than a service. Only one carer used a ‘service’ per se, and most responses were highly personal and could not have been provided.

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3. Conclusion Carers are a diverse group, and responding to their needs is best managed through highly personalised support. This project has, in discussion with carers identified some consistent themes that are reported here. Overall, information services and social events for the cared for were identified in our research as the most valued service by carers to support them in their caring role and they were also the most accessible service is the region. A detailed analysis of our research has highlighted a number of key gaps that carers in the region have highlighted in meeting their needs and requirements in their caring role. These could be used as discussion points for future work between commissioners of services and Healthwatch or other local stakeholders. Guideposts and partners will continue to pursue funding and donor contributions to provide other services which provide needed support to carers.

What this project tells us Drawing together the analysis across all groups and specific needs we have formulated the following discussion points aligned to what we learned and what it suggests: Training

MENTAL HEALTH: Training for carers was identified in our research as a key priority among carers of people with a mental health issue. Specifically training that would support carers of people with challenging behaviour and the need for specialist advice due to the nature of every situation being unique; home-training was suggested to support this need.

Our project suggests: Commissioners/funders could consider how the training needs of people caring for individuals with mental health needs can be better met.

DISCUSSION POINT: Potential commissioning of a Third Sector organisation to provide specialist Mental Health caring training – focusing specifically strategies for managing challenging behaviour.

Social events (e.g. outings or activities)

PEOPLE WITH LEARNING DISABILITIES: Social events have been identified as a valuable and important opportunity for social exchange as a key aspect; this was raised in our research by carers of people with learning disabilities. Our research highlighted that carers find it difficult to find appropriate activities or stimulating activities that matched the cognitive capabilities of the cared for. There are also concerns about what will happen when the new strategy for providing day support is implemented.

Our project suggests: Commissioners/funders could consider that despite there being services available in the region this is a key priority for more stimulating and fun activities for both carer and cared for which can be also available at the weekend; AND; More information is needed about the impact of reducing day provision on increasing social isolation.

DISCUSSION POINT: Consultation with people with Learning Disabilities and the people who support them about the impacts of reducing day provision. Potential sources of funding to widen services that support the carer and the person they care for

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to maintain social activities that contribute to their own and their caring relationship’ well-being.

YOUNG CARERS: Social events and activities have also been identified as a valuable form of support for young carers. Our discussions with professionals supporting young carers in this way indicates that there is not as regular / broad a provision as young carers across the county could benefit from.

Our project suggests: Commissioners/funders could consider how the needs of Young Carers for social support opportunities can be better met;

DISCUSSION POINT: Potential funding for more regular / broader social opportunities for Young Carers to access social support.

Alternative Care

ALL CARERS: Carers have raised the importance of in-home care for either respite from their caring role, a companionship for the person cared for or the support from a professional with relevant medical knowledge. However carers and professionals in our research found it difficult to either find respite care or find appropriate care which was a key concern.

Our project suggests: Commissioners/funders could consider how can carers best be supported to get the meaningful breaks from caring that they really need.

DISCUSSION POINT: Potential development of a more coordinated/wider reaching carers (short) breaks service.

MENTAL HEALTH: Carers of people with mental health issues have particular difficulties in accessing any form of respite provision, as the person they care for may have particular needs for support or be unable to access ‘traditional’ support options due to their condition.

Our project suggests: Commissioners/funders could consider how the specific needs of people caring for people with a mental health issues and the individuals they care for can better be met;

DISCUSSION POINT: Potential sourcing of better, more tailored, support for carers of people with a metal health issue and the individual they care for.

Information and Support

A gap within information and support services that has been identified in our research relates to the difficulty of access to information regarding help for carers to continue their education or employment. Carers expressed in our research that this would be a highly valued service.

Our project suggests: Commissioners/funders could consider how to better meet the information/advice needs of carers across the county;

DISCUSSION POINT: Provision of a cohesive carers information service across the county to ensure carers can access the information that they need.

Although counselling was not the highest valued service in our research, 55% of carers still saw this as important however it was the second hardest service carers found to access. For carers who do value this service this is an important gap.

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Appendix 1: Profile of Carers in Oxfordshire

Question: What is the profile of carers and ‘cared for’ in the region? Methodology: Secondary quantitative data. The census was our primary source A detailed analysis of the profile of carers in Oxfordshire is available in Appendix 1 including young carers and the ‘cared for’ analysis. According to the most recent Census (2011), 60,295 people are providing unpaid care in Oxfordshire3. Only 11,039 of these are registered as a carer with their GP.4 The census allows us to disaggregate Oxfordshire carers by a number of categories.

A. Demographic characteristics

3 Office for National Statistics, 2011 4 The OCCG Oxfordshire Carers Strategy 2013-16 Annual Report (Sept 2014)

Time spent caring (hrs per week)

19 or less: 72%

20 – 49: 10%

50+ : 18%

Gender

Female: 58%

Male: 42%

Age (yrs)

0 -24: 6%

25 – 49: 32%

50 – 64: 38%

65+ : 24%

Ethnicity

White British: 89.6%

Asian/Asian British: 3%

Other white: 3%

White Irish: 0.7%

Black/African/Caribbean/Black British: 0.03%

Other ethnic group: 0.03%

Mixed/multiple ethnic group: 0.1%

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B. District and ward variation

These demographic breakdowns do not vary significantly between the administrative districts of Oxfordshire (Cherwell, Oxford, South Oxfordshire, Vale of White Horse and West Oxfordshire), which is the most local level described by the census data. The overall distribution of carers between districts is relatively even, and for each district is about 10% of the population, although lower in Oxford:

One key variation to be aware of is socioeconomic status. This is key to a full carer profile because income is a key concern for carers: 65% of carers experience fuel poverty, 52% cut back on food, 74% have difficulty paying bills, and 55% are in debt as a result of their caring.5 Services often come with charges. Income will therefore affect what services a carer can access, and at what cost to their basic needs. It is not possible to see socioeconomic data for carers, but a picture of the variation across the Oxfordshire population more broadly is informative. The 2011 census does not include income data. A proxy for ‘deprivation’ is given which can be used to paint a picture of the county’s socioeconomic variation. Four ‘dimensions of deprivation’ are used, and households are grouped according to the number of dimensions on which they are deprived, from 0 – 5; these are described in Box 1A. Table 1A shows the percentage of households in each group in the five Oxfordshire districts: 5Figures from the Royal College of General Practitioners (2013), ‘Commissioning For Carers’. Cited in: Adhana, Linda; Oxfordshire Clinical Commissioning Group (2013) ‘Oxfordshire Carers Strategy 2013-2016. Annual Report September 2014’.

Number of carers per district

(% of district population)

Cherwell 13,354 (9.5%)

Central and city 11,725 (8.4%)

South Oxfordshire 13,256 (10%)

Vale of White Horse 12,438 (10.5%)

West Oxfordshire 10,358 (10%)

Box 1A. Dimensions of deprivation

“The dimensions of deprivation are indicators based on the four selected household characteristics - Employment (any member of a household not a full-time student is either unemployed or long-term sick); Education (no person in the household has at least level 2 education, and no person aged 16-18 is a full-time student); Health and disability (any person in the household has general health 'bad or very bad' or has a long term health problem.); and Housing (Household's accommodation is either overcrowded, with an occupancy rating -1 or less, or is in a shared dwelling, or has no central heating).”

- Office of National Statistics

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Table 1A. Deprivation by district

No. dimensions of deprivation

Cherwell Oxford South Vale West

Percentage of households

0 Least deprived 49.8 48.3 55 54.1 53.8

1 31.7 31.6 30 30.6 30.8

2 15.1 15.1 13 12.7 13.1

3 3.1 4.4 2 2.4 2.2

4 Most deprived 0.3 0.5 0 0.3 0.2

The districts can be ranked in the same order whether you focus on the proportion of households that are most deprived or least deprived. This ranking is shown in Box 1B. However, variation is far greater within districts than between districts. The degree of variation is shown by Table 1B below. A useful illustration is the Vale of White Horse, where the wards with the most and least households that are not at all deprived are Abingdon Peachcroft and Abingdon Caldecott respectively. This highlights the disparity between close neighbours.

Table 1B. Variation in deprivation by district

No. dimensions of deprivation

Cherwell Oxford South Vale West

Percentage of households

0 (least deprived) Min 30.4 26.2 42.3 40.2 43.3

Max 64 64.2 66.1 63.4 64.9

4 (most deprived) Min 0 0 0 0 0

Max 0.9 1.3 0.6 0.6 0.5

This picture is complicated by the fact that key benefits including carers allowance are means tested. ONS data is available on uptake of this allowance by district. This only counts those who are not in a ‘higher statistical group’, such that if other benefit claims are greater, the claimant will not be counted. These figures are shown in table 1c.

Table 1C. People claiming carers allowance as primary benefit, by district

Cherwell Oxford South Vale West TOTAL

No. claimants 730 690 540 560 460 2980

Box 1B. Regional variation

Least

South Oxfordshire

deprived Vale of White Horse

West Oxfordshire Most Cherwell

deprived Oxford

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C. Young carers

It is possible to distinguish young carers within the 2011 census data as it is disaggregated by age. The youngest group is 0 – 24 years. This group make up 5 – 6% of carers in most districts, rising to 9% in Oxford. National data for carers under-18 describes the age distribution as follows: five to seven year olds, 6%; eight to nine year olds, 7%; ten to fourteen year olds, 41%; fifteen years old, 15%; sixteen to seventeen year olds, 33%.6 In Oxfordshire, young carers typically care for less hours than the population of carers as a whole:

D. Carers by condition of person cared for

It is not possible to distinguish carers by the condition of the person that they care for on the census. To estimate the population size of carers for particular conditions, we have to look elsewhere.

The 2013 Learning Difficulties Profile gives numbers of people with learning disabilities in Oxfordshire per 1,000, and from this we can reach a total number (using the census estimate of the population). The numbers of people in Oxfordshire in the most relevant categories are shown in table 1E.

6 The Children’s Society (2013). Hidden from View: The experiences of young carers in England.

Time spent caring (hrs per week) by young carers

19 or less: 80%

20 – 49: 12%

50+ : 9%

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Unfortunately, these categories are too broad to be sure who could be said to require care (and who might need residential care), so we do not extrapolate a figure from this, but the numbers are indicative. It is helpful to compare this with dementia to give a sense of scale. The Alzheimer Society reports that the number of dementia diagnoses was 8468 in Oxfordshire in 2013. Elsewhere, the Alzheimer’s Society estimate that in the UK, 2/3 of dementia patients live at home. This gives a sense of the relative scale of carers of people with learning disabilities as a group. The data is not available to make this type of calculation for carers of people with a mental health diagnosis.

Table 1E. Learning disability diagnoses in Oxfordshire

Category No.

Adults with LD (known to GP)

561

Children with severe LD (known to schools)

515

Children with multiple and profound LD (known to schools)

153

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Appendix 2 Services in the region Question: What services are available for carers in Oxfordshire? Methodology: Online desk research. Some further information subsequently gained from interviews.

A. Statutory assistance Carers are entitled to a range of benefits, listed in Box 2A, at time of writing. The new Care Act will lead to significant changes. The council has a duty to carry out a carers’ assessment if requested to do so by someone over 16 (minors may be able to access one through a Children Act assessment). This will assess the level of risk posed to the caring role if no help is provided. Local councils will have their own eligibility criteria for support based on this risk – the only obligatory level of risk for council involvement is ‘critical’. Oxfordshire uses an ‘eligibility grid’, but does not publically detail the levels of risk at which people will become eligible for different services.7 According to Carers UK, after an assessment, charges for services are worked out according to carers’ assets. They are entitled to a protected amount to live on, and beyond this councils can choose to charge for services.8 Oxfordshire County Council state that they will not charge for

7https://www.oxfordshire.gov.uk/cms/sites/default/files/folders/documents/socialandhealthcare/adultsocialcare/livingathome/facspolicy.pdf 8 http://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment

2A. Carer Benefits

Carers’ allowance (CA) of £61.35 per week Requirements: look after someone in receipt of a qualifying disability benefit for 35 hours or more a week, and do not earn more than £102 per week (after deductions), receive a State Retirement Pension or attend full-time education.

Where State Retirement Pension is less than the CA the carer might be entitled to an ‘underlying entitlement’ payment

Carers can protect their entitlements to state benefits based on National Insurance contributions, such as State Retirement Pension, through Carer’s credits.

Requirements: caring for somebody in receipt of a qualifying disability allowance for over 20 hours per week.

A carer premium of £34.20 can be added to certain other benefits, or a carer addition of the same amount can be added to pension credits. Under universal credit there is similarly a ‘carer element’

Carers also need to be aware of the possible benefits to the person they care for: notably Personal Independence Payment (PIP), Disability Living Allowance (DLA), and Attendance Allowance.

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services directly to a carer, but may charge for services to the person cared for.9 Carers always have the right to ask for a direct payment instead of service provision. Carer Grants of £300 are available for anything that supports the carer in their role, and there is an additional £300 available at the discretion of a care manager for those in receipt of eligible services. Applications are made through Carers Oxfordshire. GP Carer Breaks Grants of £600 are available for a break, prescribed at GP discretion. Carers cannot apply for both within 12 months. They must be over 18 and care for over 20 hours a week.

B. Information

Carers Oxfordshire provides the main online information. This includes information on specialist carer services, and information that is not carer-specific but is of use to carers. They signpost to specialist and non-specialist organisations of interest to carers. For further information you can call, and help is offered for completing self-assessments. South and Vale Carers Centre is another major source of information for carers in these two regions. They also offer home visits when carers need help with filling out forms. Other organisations offer information for caring for particular conditions. This includes ADHD Oxfordshire, Alzheimer’s Society Oxfordshire, and the Oxfordshire Family Support Network, and Rethink Mental Illness. The topics covered are often similar to those above, though less comprehensive, alongside practical advice that is condition-specific.

C. Support groups

Table 2A shows the number of support groups in each district, and also the number specialising in the subgroups of particular interest to this report.10 The vast majority of support groups are monthly or bi-monthly. The stated purpose is generally social: some groups highlight that information will be available, and some invite guest speakers. West Oxfordshire is significantly under catered for, while Cherwell has the most groups. They have the smallest and largest numbers of carers in the county respectively, but the difference in support group provision is not proportionate. Provision is particularly unevenly spread within district in the Vale of White Horse and West Oxfordshire. 2/3 of Vale support groups are in Abingdon, and 2/3 of West Oxfordshire support groups are in Witney.

2A. Support groups in Oxfordshire

Total groups

Learning disabilities

Mental health Young carers

Oxfordshire 117 5 12 14

Cherwell 37 1 3 4

Oxford 26 2 4 3

South Oxfordshire 22 0 3 2 9 https://www.oxfordshire.gov.uk/cms/content/carers-assessment 10 These are drawn from a compilation of online listings, and edited during research as we found some information to be out of date. It should be noted that some listings may be out of date unknown to us, and that support group provision is constantly shifting.

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Vale of White Horse 21 1 1 3

West Oxfordshire 10 1 1 2

Alzheimer’s Society Oxfordshire are the key provider of dementia support groups. The figures above include memory cafes, which are for the cared for as well.

Rethink Mental Health Oxfordshire are the key provider of carers for those with a mental health diagnosis

Oxford Family Support Network are the key provider of support groups for carers of those with learning disabilities (4 of the 5 specialist groups available)

Spurgeons Oxfordshire are the key provider of support groups for young carers

D. Emergency care assistance An Emergency Carers Support Service is provided by Carers Oxfordshire, and is free to carers. You must register before the emergency occurs. When called, a responder will visit to assess the situation, which may take up to an hour. Care is then put in place for 48 hours, with the possibility of 72 hours if necessary, and a promise to make provisions if care is needed for longer. No equivalent is available where the person cared for is under 18.

E. Alternative care Alternative care could be provided by a home care service, or a day centre or similar out-of-house service for the person being cared for. Care away from home: daytime In all, we identified 91 services providing day care for more than three hours at least once a week in Oxfordshire. The distribution of these between the districts is shown in table 2B. A large proportion are for ‘elderly people’ and cannot handle specialist needs: the table shows how many services may be explicitly accessed by the subgroups of particular interest in this report. 48 of these 91 groups are open three days a week or more, and the bulk of this group - 38 - are open five days a week or more. 78 open for five hours more on their working days; this drops to 13 that stay open for 8 hours or more (all of which are either Oxfordshire County Council Services, or mental health specialist services). In addition to these day services, some nursing homes offer a day service alongside their residents. These are shown in table 2C. Where a home can only accept older clients it is not shown as accessible to those with a mental health diagnosis or learning disabilities, even if it is able to take older clients with these conditions.

2B. Out-of-home day care Total which can be used by people with…

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Total A mental health diagnosis

Learning disabilities

Oxfordshire

Cherwell 19 3 7

Oxford 21 5 4

South Oxfordshire 23 3 7

Vale of White Horse 14 3 4

West Oxfordshire 14 2 4

2C. Out-of-home day care at residential homes

Total which can be used by people with…

Total A mental health diagnosis

Learning disabilities

Oxfordshire

Cherwell 9 2 1

Oxford 4 1 1

South Oxfordshire 13 1 2

Vale of White Horse 5 1 3

West Oxfordshire 10 0 0

There are some key providers to be aware of:

50% of dementia care services (and the majority of dementia only care services) are provided by Age UK. Daybreak and Alzheimer’s Society also work in this area.

The Camden Society provides 3 services for people with learning disabilities – Woodlands, the Poplars and the Haven

Oxfordshire County Council (OCC) provides 16 centres for those with learning disabilities. Combined with their Health and Wellbeing Centres (below) this is the bulk of available provision for this group.

OCC provide seven Health and Wellbeing Centres. These are generalist day centres.

Specialist mental health support is provided by Restore (with a focus on education and employment) and Mind (with a focus on Wellbeing & Recovery).

Care away from home: overnight

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We identified 98 care homes offering respite care in Oxfordshire (dependent on availability). 33 are not-for-profit; the organisations involved in this are listed in box 2B. However, the overwhelming majority can only accept clients over a certain age limit. When these are discounted, there are only four that can accept people with either a mental illness or a learning disability. Amberhouse in Didcot provides exclusively for people with a mental health diagnosis: it has six rooms. Brook House Residential Care Home, also in Didcot, provides for people with physical disability, learning disability or a mental health diagnosis, and has four rooms. Woodview in South Oxfordshire has 5 spaces for people with learning disabilities. Finally, Cherwood House Care Centre in Bicester welcomes all ‘vulnerable people’ and does not appear to have an age restriction. In addition, out of house care can be provided by the Shared Lives Scheme. This provides a network of people willing to provide care in their own homes. There are approximately 100 shared lives carers in Oxfordshire.11 Care in home Domiciliary care services may assist a carer with their tasks or replace their caring so that they can enjoy a respite break. For carers able to pay for such services privately there is a wide range of options: we identified 56 private care providers in Oxfordshire.12 There are nine home care agencies sub-contracted by the local authority and three by the NHS13. As this is considered a service for the person being cared for, there may be a means-assessed charge. Not-for-profit care agencies are listed in Box 2B. In general information about possible care packages is vague as they are assessed and designed individually.

11 http://www.carersoxfordshire.org.uk/cms/content/time-out-or-short-break 12 http://www.homecare.co.uk/homecare/listings.cfm/searchcounty/Oxfordshire 13 See 8.

2B. Not-for-profit home care

agencies

Orders of St John Care Trust – 15

Greensquare – 4

Anchor - 2

Elizabeth Finn Care – 2

Sanctuary Group – 2

Methodist Homes - 1

Friends of the elderly - 1

Pilgrims Havens - 1

St Luke's Oxford – 1

Four care homes are self-contained registered charities.

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Befriending schemes may be able to offer some light relief from volunteers willing to take on small tasks. In Oxfordshire these schemes are provided by OxBEL, and the Royal Voluntary Service’s Good Neighbour Scheme. Between full domiciliary care and befriending schemes lies Guideposts’ own Help at Home scheme which offers respite care, practical assistance, personal care, companionship and housekeeping for people who need the support to stay on at home.

F. Days out, holidays and activities Days out and holidays for the carer Days out for carers in Oxfordshire are provided by Spurgeons (for young carers). South and Vale Carers Centre (free for young carers, £15 - £20 plus any entrance fees for adult carers), and Didcot and Abingdon early intervention hubs (for young carers). A shifting array of student groups from Oxford University have also run days out and residentials for young carers. Holidays are facilitated by a number of national organisations, for example, the Carers Support Centre (Enterprises) provides British holiday homes for carers and their friends and Saga has limited grants for carers.

2B. Not-for-profit home care agencies

Response DCA: homecare for people with a learning disability or mental ill-health. They charge, and will arrange a financial assessment to check whether you are entitled to support from the council or benefits agency. Response DCA has 5 carers. Nicholson House: homecare for older and vulnerable people in the Abingdon area, including for specialist needs, disabilities and sensory impairments. Style Acre: support for home living ranging from 24 hour care, to a few hours per week. Supports 70 users. The Viking House domiciliary care service (Barnados): for under-18s with complex health needs already receiving support at Viking House. There is no direct charge: the cost is covered by the NHS. Real life options: home support for people with learning disabilities, complex support needs or autism. Hft: supported living for people with learning disabilities, from a few hours a week to 24 hour care. Crossroads Care: packages range from assistance with daily activities through to complex care, including those with specific medical issues or disabilities OSJ Isis Care: aims to enable independent living and Care Plans will be personalised for each client. Chiltern Centre for Disabled Children have an outreach homecare service. Support can take a variety of forms. 25 carers.

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Days out and holidays together Crossroads state that they can assist with family days out, holidays and weekends away. Holidays for carer AND cared for are also provided nationally, for example by Vitalise, but again these come at a cost (starting from £230 for Vitalise). Activities and holidays for the person cared for In our empirical research, we found that many carers want activities for the person that they care for, which would allow them to take a break while doing something positive for their loved one. The following services provide holidays for children with support needs: Yellow Submarine, Barnados, Dimensions and the Parasol Project. We did not find a local provider of holidays for the person cared for (18 and over) to attend alone. The majority of social activities for the person cared for to attend alone are for children and young people. Here, providers are: Phab, Austism family support, Barnados, Guideposts, Parasol Project, Let’s Play Project, Core Assets, North Abingdon Children’s Centre, Dimensions, the Ice Centre, Go for It, KEEN, the Forum, the Music Club, Oxford Ambassadors Club, Courtenders and WOAPA-Too. The majority of these provide after school clubs, holiday clubs or youth clubs. Exceptions are the Music Club, and WOAPA which offers a performing arts group. Social activities for the person cared for as they get older are provided by Downs Syndrome Oxford, the fourteen club, the Chiltern Centre for Disabled Children (sic – ‘breakaway group’ is for age 18 – 30), and the Yellow Submarine Monday Nights Club. Downs syndrome Oxford of course provide for people with Down Syndrome, while all the others focus on learning disabilities. In addition, there are six sports groups and a dance group. Two of the sports – Oxford Swans Swimming Club and Oxford Sailability – may also be attended by the carer. Enrych and Crossroads both offer flexible services that might enable the person cared for to take part in a mainstream social activity.

G. Training The following courses are available to help carers with their training role:

Free first aid (Carers Oxfordshire)

Free moving and handling training(Carers Oxfordshire)

Health care and moving and handling training from the ‘Shared Care Protocol’, (handled via GPs)

SPECAL course on looking after people with Dementia (Contented Dementia Trust)

In October 2014, Home Instead Senior Care delivered free workshops on dementia to family carers

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Carers Education & Training Programme (CETP) provides information and skills for looking after people with a mental health diagnosis (Rethink)

A five-session course ‘Confidence 2 Care’, which covers practical info, emotional coping strategies and available resources. A course on health care tasks including moving and handing (Carers Oxfordshire)

We identified just one form of support for carers to continue with careers or education: Headway provides back to work support for carers of people suffering a brain injury.

H. Grants South and Vale Carers Centre administers a grants scheme on behalf of Oxford County Council for young carers. Outside statutory support (see section A), this is the only direct financial assistance we identified.

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Appendix 3 Survey questions 1. About your care

Which of these best describes the condition of the person that you care for? Tick all that apply. Physical illness or disability. Mental illness. Dementia. Elderly. Learning disability. Other. How much time a week do you spend with the person you care for? 1 – 9 hours. 10 – 19 hours. 20 – 29 hours. 30 – 39 housr. 40 – 49 hours. 50 hours +. Does anyone else provide care for the person you care for? If yes, who? 2. What matters to you?

Below are some possible services that could be provided for carers (some already are, some are not). How important are these for you? Very important, quite important, not very important, not at all important

Professional care provided at home, daytime;

Professional care provided at home, at night

Out of house care, daytime (e.g. day centre)

Out of house care, over night

Emergency support

Social events for the person you care for

Social events for you and the person you care for

Specialist holiday for the person you care for

Specialist holiday for you and the person you care for

Information about carers rights/services

Help to complete forms (e.g. for benefits and personal budgets)

Training for care tasks

Help to continue your education or employment

Support groups

Counselling 3. What do you use? Do you currently use any of the following? Yes, No I don’t want this, No I can’t find this, No I’m not eligible for this, No it’s too expensive (Same services as above) 4. Getting it right for you Sometimes the services that we have discussed are available but carers do not use them. Have you ever been prevented from using a service for any of the following reasons? If yes, what was the service?

I could not arrange the transport

The timing was inconvenient

The service was not suitable for the condition of the person I care for

The service was not suitable for the age of the person I care for

I did not have necessary internet access

The application process was too complex

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Please tell us if you have any comments about the services you have used, or tried to use. Are there any other services that you would like to see? 5. Taking a break Do you feel you can take the breaks from caring that you need? Yes, Some but not all, No Is anyone you know able to help you take a break? If yes, who? Have you been prescribed a carers break by a GP? If yes, how did you use the grant? 6. Finally… Where are you based? Cherwell, Oxford, South Oxfordshire, Vale of White Horse, West Oxfordshire, Other Where did you get this survey? How old are you? 0 – 24, 25 – 49, 50 – 64, 65+ Where do you find information about carers’ rights and services? Tick all that apply Online, my GP, Social services, Carer support groups, Carers’ Oxfordshire, Other