Supporting carers of people at the end of life: the role of the general practice team 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 Over 80% of carers have seen their GP in any year but carers often neglect their own needs Carers probably know more about the person they care for than anyone else

The Quality and Outcomes Framework (QOF) and carers The QOF includes an indicator which relates to identifying carers This is worth 3 QOF points Most practices (98%) in England and Wales in 2009 received these points but less than 1% of practice lists are identified as carers QOF annual voluntary incentive reward programme. Max 1000 points Not much incentive!! Try and avoid carer use words like looking after’ or ‘helping’ a friend or relative

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 An additional £400 million to Primary Care Trusts and commissioning consortia subsequently

Research There 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) Research is limited Bulsara and Flynn (2006) specifically asked about carers’ needs e.g. Very few had a carers’ register, offered carers flu vaccines or had leaflets specifically for carers

A survey with GPs Conclusion: little has changed since 2001 Postal survey with 78 GPs General practice should proactively identify carers But supporting carers can be difficult Barriers include time, resources and lack of knowledge They lack training and half lack confidence working with carers There are too few services for carers to which practices can refer A quarter thought carers would like emotional support About one in five mentioned referral and information/advice Services offered specially for carers were limited (Greenwood et al 2010) Conclusion: little has changed since 2001 Postal/email questionnaires from across England. Given the proposed greater commissioning powers there is more that can be done 78 out of 95 GP responded Questions were mostly agree disagree type questions with a few open-response questions <1 in 10 had a carers’ register, offered carers flu vaccines or had leaflets specifically for carers

Video of Shara - a former carer and now carer mentor

Variability in support In 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). End of life care strategy – care plan for the carer which is reviewed. Carer assessment – social services also discuss the contingency plan – if too0 ill to care that emergency services called in. Offering choice about where to receive EOL care is important feature of national strategy. 31% deaths at home in 1974, 18% in 2003. 18-22% of health costs associated with EOL care (Fassbender et al 2009) Canadian study but UK likely to be similar. Until 4 weeks before death both those that die in inpatient care and those that die at home spend a small amount of time in in-patient care (Grande et al 2003). The quality of care provided by family caregivers is a major factor in the final year of life, irrespective of where people die. Families lay caregivers playing an increasing important role in the provision of home health care as a result of the transfer of responsibility for tasks decisions to family care givers and managing patient in the community (Bailey 2012)

Place of death 51% died in hospital 21% at home 22% in care homes 6% in hospice National Voices Survey (DH 2012)

Challenges for general practice Difficult to distinguish between carers at the end of life and carers in general Difficult 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 death Family agreement Extended family support Living with primary caregivers Patient expresses preference Low functional status Use 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 depression 3. Ask about finances 4. Signpost to services 5. Plan for emergencies Supporting carers: an action guide for general practitioners and their teams