Capturing the diversity of carer needs? The carer assessment process

1. Capturing the diversity of carer needs? The carer assessment process D. Seddon, C. Robinson, Y. Tommis& B. Woods Bangor University

2. Carer research at Bangor • 11 studies exploring: • Carer legislation. • Carers Strategies. • Postal surveys of carers across England & Wales spanning 5 year period (n=2,000 carers). • In-depth interviews with: • Carers (n=640) & those they care for (n=104). • Strategic & operational staff (n=578). • Carer focus groups (n=30).

3. Assessing carer need – policy context • Legislation recognises the importance of assessments that are: • Sensitive to the needs of carers. • Aware of carers’ ability & willingness to continue caring. • Legislation: • Carers (Recognition & Services) Act 1995 • Carers & Disabled Children Act 2000 • Carers Equal Opportunities Act 2004 • Carers (Equality) Act 2010 • Carers Measure Wales 2010

4. Carer assessment process • Conduct of carer assessments as part of the mainstream work of practitioners is variable. • Separate carer assessments are not an established feature of practice: One of the problems we’ve had in [local authority] is the option to assess people, either in their own right, or as a joint assessment alongside the service user & it’s always more convenient for the practitioner to do it as a joint thing. Carers Officer

5. Carer assessment process • Reluctance to complete separate carer assessments as they: • Raise carer expectations. • Identify needs which services are unable to address. Many social workers are involved with carers but they often shy off from doing assessments because assessments throw up a need that they can’t fulfil. Independent Sector Representative • Time constraints: Separate assessments are low on the list of care managers’ priorities. Care Manager

6. Carer assessment process • Carers confirm this: [….] the person who visited me kept apologising for the fact they may not be able to help even though she thought I should get support. • Challenges faced by carers are complex, but the solutions are often simple: • Contact person. • Signposting to information. • Basic equipment. • Short break.

7. Whose role, whose responsibility? • Responsibility for completing carer assessments is controversial. • Different approaches across Local Authorities. • Carer Officers: • Helpful in promoting uptake of carer assessments. • In-depth understanding of carer issues & local services. …. local authorities should have designated Carers Officers, whereas with the social work job, it’s a small part of a much bigger job and sometimes when you’re doing a lot of crisis intervention work, it can be sidestepped. Care manager • BUT - there are capacity issues.

8. Eligibility criteria • To qualify for an assessment, carers must provide a substantial amount of care on a regular basis. • Regular & substantial are not defined in legislation. • Practitioners equate regular & substantial care with the provision of practical & personal support. • Practitioners fail to take into account the complexity & diversity of the caring role, or to capture the effects of caring on carers’ everyday lives.

9. Eligibility criteria • Practitioners describe a reactive approach: Things would have to be pretty drastic. The carer would have to be providing a high level of care, night & day, & I’m afraid to say they’d have to be on their hands & knees. Care Manager We’re only meeting the situation when it’s absolutely dire [….] the carer is literally on the verge of a breakdown or they’re ringing the department saying ‘I’m going to leave my mum at your doorstep’. Care Manager

10. Carer experiences • Carer experiences of assessment are variable. • For some, it is a positive opportunity to: • Have their caring role formally recognised. • Access services. Professional & supportive, I now have the help I need. The social worker found excellent carers for us and was very kind and helpful.

11. Carer experiences • As well as services, carer assessment can give rise to less tangible outcomes – e.g. informed decision-making. • Carers appreciate being able to: • Talk privately about their caring role. • Raise personal issues that may be difficult to discuss in the presence of the person they support. I wouldn’t say anything detrimental in front of […]. Having a carer assessment in front of the cared-for is a waste of time.

12. Carer experiences • Others see it as a test: I didn’t really understand why I was having one. I wasn’t sure whether they felt I was incapable. I wasn’t sure whether they were assessing my abilities or what it was all about. To find out if I was capable of looking after her, doing it wrong or right. • A test that does not take into account the nature & dynamics of caring relationships.

13. Carer experiences • Practitioners confirm some carers view the assessment with suspicion: …they see it as policing their ability to care. ..… people don’t really understand what they are or what they get out of it. And also they will have heard negative stuff about it. Someone else may say well I had one and nothing happened, didn’t get anything from it.

14. Carer experiences • Process of assessment not always made clear: ….people aren’t sure what type of assessment they’ve had or whether they’ve had an assessment at all.

15. Parameters of assessment • Practice Guidance says carer assessments should focus on carer-defined outcomes, paying attention to: • Nature & extent of caring activities. • Coping strategies. • Other commitments – e.g. employment. • Relationships. • Carer willingness & ability to continue caring should notbe assumed. • But do they?

16. Parameters of assessment • Limited attention paid to willingnessto continue caring: …. in the present economic climate, well probably always, we don’t really want them to choose. The only choice we want them to make is that they carry on doing it. Local Authority Manager • Purpose of assessment is to encourage continued caring: I was emphatically not asked about my willingness to continue caring….this was taken as read and expected. Carer • Carers as resources to be maintained in their caring role.

17. Parameters of assessment • Carers highlight limited opportunities to discuss issues that are important to them: • Paid employment. • Education & training. • Social & leisure activities. • Carer assessments do not recognise: • Varied & multiple roles that carers occupy. • Individuality of carer need. • Focus on practical needs - limited recognition of social & emotional needs.

18. Recording unmet need • Minimal recording of unmet need: It seems to go into a black hole. And I think social workers then think well what’s the point of recording the unmet need, if nothing is going to come as a result of that you know? Care manager

19. Reviewing carer need • Staff - few carer assessments lead to active care management. • Carers: • not confident that changes in their circumstances prompt a review of their needs. • question if practitioners can help them manage change & uncertainty. I have not spoken to the social worker for over a year. I know who she is, but it was left that I should contact her.

20. Bridging the gap between policy & practice • Address the ambivalence of practitioners. • Appoint dedicated carer assessment officers to promote the conduct of carer assessments as a key component of mainstream practice. • Achieve greater consistency in establishing carer eligibility for assessment.

21. Bridging the gap between policy & practice • Framework of good practice to underpin assessment: • Carer generated & outcome focused. • Does not make assumptions about carer willingness and ability to care. • Acknowledges: • Diversity of caring relationships. • Individuality of carer need.