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Getting it right for carers

supporting someone at end of life

Core research team Susan Swan Research Nurse, Marie Curie Hospice, Glasgow Dr Emma Carduff Research Lead, Marie Curie Hospice, Glasgow Richard Meade Head of Policy & Public Affairs, Scotland, Marie Curie Steering Group Peter Hastie (Macmillan Cancer Support) Tim Warren (Scottish Government) Peggy Winford (Scottish Government) Kiran Haksar (Scottish Government)

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SUMMARY

The Carers (Scotland) Act (2016) places a duty on local authorities to prepare an Adult Carer

Support Plan (ACSP) and a Young Carer Statement (YCS) for anyone they identify as a carer,

or for any carer who requests one. The Carers Act requires Scottish Ministers to set

timescales for preparing ACSPs and YCSs for carers of those in their final six months of life.

The aim of this research was to provide evidence on the supportive needs of carers

supporting someone at the end of life to inform recommendations regarding the optimal

timescales for the creation of ACSPs under the Carers (Scotland) Act (2016).

The study triangulated data from a literature review, secondary analysis and two primary

focus groups with bereaved carers of people with malignant and non-malignant diagnoses in

Central Scotland. Identified themes included barriers to and triggers for identification, and

support needs including physical support, psychological support, respite, information and

communication, co-ordination and competing demands. End of life and speed of decline

were also highlighted as key transitions in the caring journey.

The findings highlight the complex nature of identifying carers. There were many missed

opportunities, for example a change in health status of the carer or cared-for person or their

interaction with services. Overall, psychological support was valued, sometimes more than

support with the physical aspects of caring, and this extended into bereavement. Peer

support and basic compassion from health and social professionals were also highlighted as

key to feeling well supported. Respite was essential, so carers could have time away from

the caring role. The vital role of primary care health professionals and social workers was

widely discussed by the participants, particularly with regard to co-ordination of care and

the provision of information. The decline towards end of life was often faster than carers

expected which necessitated a responsive service to meet their needs contemporaneously.

Assessing need doesn’t necessarily open a Pandora’s box as often knowing how and what

can be accessed is sufficient. However, timely intervention is crucial to ensure carers feel

supported and crises are avoided. Our ambition is that carers of people with terminal illness

are identified early in the illness trajectory of the patient, ideally at diagnosis, so carer needs

are assessed and met before end of life. In so doing, we anticipate that the number of carers

requiring an ACSP to be fast tracked should be small, although the level of need may be

great. Wide dissemination of the definitions and responsibilities of health and social care

professionals is key to meeting the ambition of the Carers (Scotland) Act (2016).

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Contents

SUMMARY ............................................................................................................................................... ii

1. Introduction .................................................................................................................................... 1

2. Aim .................................................................................................................................................. 2

2.1 Objectives................................................................................................................................ 2

3. Methods ......................................................................................................................................... 3

4. Results ............................................................................................................................................. 4

4.1 Participants ............................................................................................................................. 4

4.2 Collective findings ................................................................................................................... 6

4.2.1 Identification ................................................................................................................... 6

4.2.1.1 Triggers to identification ......................................................................................... 6

4.2.1.2 Barriers to identification ......................................................................................... 7

4.2.2 Support needs ........................................................................................................................ 9

4.2.2.1 Physical needs ........................................................................................................ 10

4.2.2.2 Psychological support ............................................................................................ 11

4.2.2.3 Importance of respite care .................................................................................... 15

4.2.3.4 Co-ordination ......................................................................................................... 16

4.2.2.5 Information and communication ........................................................................... 19

4.2.2.6 Competing demands .............................................................................................. 22

4.2.3 Speed of decline ............................................................................................................... 23

4.2.4 End of life care ................................................................................................................. 24

4.3 Additional findings ............................................................................................................ 25

4.3.1 Rural carers ...................................................................................................................... 25

4.3.2 Carers of children requiring palliative care ...................................................................... 26

4.3.3 Young carers ..................................................................................................................... 26

5. Strengths and Limitations ............................................................................................................. 27

6. Implications ................................................................................................................................... 28

6.1 Key implications .................................................................................................................... 28

6.1.1 Speed of access ............................................................................................................. 28

6.1.2 Identification ................................................................................................................. 28

6.1.3 Education and raising awareness ........................................................................................ 29

6.1.4 The importance of primary care professionals .................................................................... 29

6.2 Additional implications ......................................................................................................... 29

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6.2.1 Post carer support ................................................................................................................ 29

6.2.2 Carers of those not in the home environment ..................................................................... 30

6.2.3 Further research ................................................................................................................... 30

7. Impact ........................................................................................................................................... 31

8. Conclusion ..................................................................................................................................... 32

9. References .................................................................................................................................... 33

Appendix 1 Conceptual map of the findings ......................................................................................... 38

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1. Introduction

The Carers (Scotland) Act (2016) places a duty on local authorities to prepare an Adult Carer

Support Plan (ACSP) and a Young Carer Statement (YCS) for anyone they identify as a carer,

or for any carer who request