How Well Are We Delivering for Carers? A Report on the Baseline Findings Timothy B. Kelly, PhD Glasgow Caledonian University School of Health and Social Care

Complexity The Aims and Objectives of the Projects are Ambitious Across Systems Not a Simple Linear Process

Evaluative Roadmap Questionnaires to Document Carers’ Experiences of Hospitalisation & Post- Hospitalisation Data Collected by Carers Centre During Process of Working with Carers Interviews and Focus Groups with Key Stakeholders and Project Workers Data Collected about Training and other Activities Provided to Partners

Experience of Carers - Questionnaire Questionnaire sent to 2500 carers on Carer Centres’ databases Questionnaire Focused on Hospitalisation & Post Hospitalisation Experience 137 returned with recent hospitalisation

Experience of Carers – Questionnaire: Demographics

85% women 96% white 28% caring for husband 20% caring for disabled child 25% caring for parent or in-law

Experience of Carers - Questionnaire: Demographics Heavy duty carers Caring for 8.6 years on average 64% provide care more than 50 hours per week Expected Conditions Represented in People Being Cared For: Dementia (16%)Heart Disease (15%), Stroke (12%), Lung Disease, Neurological Disease, Cancer & Mental Illness (10% each), others (10%)

Experience of Carers – Questionnaire On many measures carers’ report variable experiences, i.e. responses spread evenly across “very poor” to “excellent”

Experience of Carers – Questionnaire: Support Received from Hospital and Social Work Staff

Experience of Carers – Questionnaire: Percentage Consulted During Admission

Experience of Carers – Questionnaire: Feel Supported as a Carer

Experience of Carers – Questionnaire On many measures carers report variable experiences, i.e. responses spread evenly across “very poor” to “excellent” On some measures carers report experiences more heavily weighted towards the negative

Experience of Carers – Questionnaire: “Negative” Experiences 66% of respondents not asked if they were a carer during hospitalisation Only 9% offered practical training in relation to the care required for the condition of the cared for person during hospitalisation Only 15% of carers indicated receiving training post-discharge Only 14% were informed of their right to a Carer’s Assessment

Experience of Carers – Questionnaire: “Negative” Experiences

Experience of Carers – Questionnaire: Partnership Working Only 29% felt their expertise was fully or mostly recognised by service providers Only 27% felt care professionals understood their needs as carers Only 21% felt that health, social work and carers organisations worked together

Carers Centre Data on “Moffat” Carers Information collected on carers being served as part of Moffat Project Data on 107 carers though not all centres data included Like “pre-Moffat” carers, they are Mostly middle-aged or older carers Heavy and long-term carers Have experienced negative health impacts

Carers Centre Data on “Moffat” Carers Unlike Pre-Moffat Carers, these carers have: Mostly been informed of the right to a carers assessment (70%) Mostly been identified as carers during hospitalisation (88%) More likely to be involved in the discharge process (though at 30% the figure is still low)

Baseline Interviews and Focus Groups Project Managers (7) Key NHS and Social Care Managers (10) Moffat Project workers in each of the pilot sites.

Key Messages from Baseline Interviews and Focus Groups Shared understanding of the vision for the project by stakeholders at all levels Recognition of being in early days Initial process strongly supported at a strategic level Implementation strengthened at operational level, in the main, through provision of facilities and key contacts

Key Messages from Baseline Interviews and Focus Groups Project workers are only beginning to establish themselves at the frontline of service delivery Concerns expressed about best way to fit into existing provision which is by necessity patient led without having a detrimental impact Project fits within wider policy context project objectives were problematic and should be more realistic and measurable

In Summary There are no surprises in the baseline questionnaires. The needs of many carers are not being met. The carers being served by the project appear to be having a different experience though still early and we don’t know what impact that will have Systems work is in very early days but there is strategic and operational support