Dr Nan Greenwood (St George’s University of London & Kingston University) Dr Anne Arber (University of Surrey) ESRC Carers seminar series: Carers in the.

Dr Nan Greenwood (St George’s University of London & Kingston University)

Dr Anne Arber (University of Surrey)

ESRC Carers seminar series: Carers in the 21st Century: developing the evidence base York, February 2013

Overview and aims

• General practice teams and carers• Video clip of a carer• Carers at the end of life• Discussion groups – more details

later• Feedback and conclusions

Why general practice?• ‘GPs and their teams are usually the first

place that carers have contact with the National Health Service. They are uniquely placed to recognise that someone is, or is about to become, a carer.’ (RCGP & PRTC)

• Over 80% of carers see their GP in any one year

• Carers make up approximately 1 in 10 patients on any GP practice list

The Quality and Outcomes Framework (QOF) and carers

The QOF includes an indicator which relates to identifying carers

This is worth 3 QOF pointsMost practices (98%) in England

and Wales in 2009 received these points but less than 1% of practice lists are identified as carers

Government funding

• As part of its Carers’ Strategy between 2011 and 2015 £400 million has been allocated to PCTs in England to improve support for carers

• Councils also receive a Carers’ Grant within their General Local Government Allowance Grant

• Some authorities use this to work with GP practices to reach and support carers

• Money is not ring-fenced• NHS trusts can set their own priorities for

spending it

ResearchThere is little recent research

UK postal survey with GPs and general practice teams:• GPs thought they had a key, proactive role• Lacked time, resources and training (Simon & Kendrick

2001)

Australian research investigating GPs’ perceptions:• GPs were aware of carers’ increased emotional needs

but offered ‘practical’ services (e.g. referring & directing carers to services for practical assistance)

• GPs preferred to refer carers to community services but some did offer counselling - ‘informal sharing’ or ‘coffee cup counselling’ (Bulsara & Flynn 2006)

A survey with GPsPostal survey with 78 GPsGeneral practice should proactively identify carersBut supporting carers can be difficultBarriers include time, resources and lack of knowledgeThey lack training and half lack confidence working with carersThere are too few services for carers to which practices can

referA quarter thought carers would like emotional support About one in five mentioned referral and information/adviceServices offered specially for carers were limited (Greenwood et

al 2010)

Conclusion: little has changed since 2001

Video of Shara - a former carer and now carer mentor

Variability in supportIn the National Voices Survey (n=22,292) the

support for carers in the last 3 months of life was surveyed:

20% report getting support but would have liked more support

15% report not getting enough support despite trying

15% would like support but didn’t ask(DH 2012)

End of life care strategy (DH 2008)

Identifies the importance of the preferred place of care and place of death (DH 2008).

By 2035 49.5% of all deaths in the UK will be in the over 85 age group. (In 2010 over 85 age group deaths equated to 36% of all deaths).

Place of death51% died in hospital21% at home22% in care homes6% in hospiceNational Voices Survey (DH 2012)

Challenges for general practiceDifficult to distinguish between carers at the

end of life and carers in generalDifficult to define when someone is nearing

the end of life as some illness is unpredictable especially non-malignant disease (Kings Fund 2011)

Lack of onward referrals and access to services/support

End of life care offered late

General practice and care planning

Gold Standards Framework - developed in primary care to identify patients likely to die within 12 months

Advance care planning – discussions take place in primary care with the patient and the family/carer and these discussions documented in the patient records

Second fiddle status

Family care givers were crucial to enabling patients to die at home.

However, carers seem to be negated to ‘second fiddle’ in the many areas including general practice, social services, and the research agenda at the end of life (Lowson et al 2012)

6 strongest predictors of home deathFamily agreementExtended family supportLiving with primary caregiversPatient expresses preferenceLow functional statusUse and intensity of home care(Bailey et al 2012, Grande et al 2004)

Research agenda?

What other information do we need to have regarding general practice and support for carers at the end of life?

What are the key research questions for carers at the end of life? Please prioritise them.

Five key ways for GPs and primary care teams to support carers (PRTC &RCGP p7)

1. Just listen!2. Think of depression3. Ask about finances4. Signpost to services5. Plan for emergencies