Title: Working in partnership with informal carers Authors: Julie Bliss, BSc, MSc, PGDE, RGN, DN Correspondence to: Julie Bliss Florence Nightingale School of Nursing & Midwifery King s College, London James Clerk Maxwell Building 57 Waterloo Road London SE1 8WA Telephone: 0207 848 3211, Fax: 0207 848 3219, email: julie.bliss@kcl.ac.uk 1
Working in partnership with informal carers Abstract More than 5 million informal carers provide support to individuals who wish t remain within their own homes. Research has identified several recurrent themes, such as a limited understanding of the informal carer role; deficits in information sharing and the involvement of both service users and informal carers within decision making in relation to care packages. This paper considers recent policy directives in relation to the experience of informal carers within the primary care setting, placing particular emphasis on the role of the district nurse in working in partnership with informal carers. Key words: Informal carers, partnership, decision making, information sharing, policy It is important to acknowledge that this paper does not focus upon the distinct needs of young carers. Background During the past 15 years, since the introduction of the 1990 NHS & Community Care Act, informal carers have played an increasingly significant role in supporting individuals within their own home. This increased involvement of informal carers has taken place during a time of great change within the provision of health and social care which has seen the role of the health service, in particular district nursing, reduced in relation to providing assistance with hygiene and other activities of daily living. The move community care has been suggested to mean care by the family with 80% of community care across Europe being provided by the family (Walker 1995). 5.2 million people provide informal care in England and Wales with over 1 million providing more than 50 hours of care per week (ONS 2001). Of the carers providing more than 50 hours care per week more than half were aged 55 years and over and experiencing poor health themselves, further detail of the types of help provided by informal carers can be found in figure 1. It is important to remember that informal carers, like patients, are not a 2
homogenous group but have a variety of experiences and needs which need to be considered by district nurses and others involved in providing health and social care. Current policy and legislation The Carers (Recognition and Services) Act 1995 introduced the right for carers to have an assessment of their ability to care undertaken within their own right, as opposed to in conjunction with the assessment of the care recipient. However in a postal questionnaire returned by 3031 (n=5000) members of the Carers National Association (now Carers UK) in 1996/1997, only 38% indicated that their needs had been assessed with a further 6% waiting for an assessment (Henwood 1998). In 1999 the Department of Health published it s Carers Strategy (DoH 1999) which outlined a substantial policy package for carers, this strategy identified three key elements which need to be considered by all organisations involved in caring: information, support and care. Central to the Carers Strategy are the assumptions that individuals have the right to choose to be carers and to be adequately prepared to take on an informal caring role, this does not appear to be reflected in reality. Further carers should receive appropriate support when required and that carers should be enabled to care without resulting in damage to their own health or position within the community. However, experience of primary health care and consideration of current literature would suggest that supporting carers does not always translate into practical help and information for informal carers (Henwood 1998, Brereton and Nolan 2000, Pickard and Glendinning 2002, Ingleton et al 2004). In an attempt to deliver the underpinning principles of the Carers Strategy (DoH 1999) the Carers (Equal Opportunities) Act 2004 builds on the existing legislation. The Act sets out to ensure that all carers know that they are entitled to an assessment of their needs and places a duty on Local Authorities to consider carers outside interests when carrying out an assessment. The carer s assessment is identified as a mechanism whereby carers can access services and support. The policy guidelines for the Act also identify the importance of promoting better joint working between Local Authorities and the health service to ensure support for carers is delivered in a coherent manner. It is important to 3
consider that the support and involvement of carers and the care recipient is a recurrent theme within current health care policy and legislation and should provide the underpinning to all district nursing care provision. The National Service Framework for Older People (DoH 2001) identified the importance of providing information and involving the service user and their carer in the decision making process regarding care. This is reiterated in the 2005/2006 2007/2008 Health & Social Care Standards and Planning Framework (DoH 2004) which identifies four key domains; health and well being of the population, patient/ user experience, long term conditions and access to services. Within these national targets the standards include providing health care in partnership with patients, their carers and relatives, respecting their diverse needs, preferences and choices, and in partnership with other organisations (especially social care organisations) whose services impact on patient well-being (DoH 2004 p31). Experiences of informal carers In a postal survey of members of the Carers National Association (CAN) Henwood (1998) identified that carers felt that health care professionals did not always help them to understand the condition/illness of the dependent person. Equally they felt that health care professionals did not help them to access available help and perhaps more fundamentally to understand what it actually means to be a carer. This is of concern, particularly taking into consideration that the participants were members of the CNA and therefore more likely to be aware of information resources and available services. The lack of satisfaction in relation to information appeared to be related to medication and treatment regimes, both areas in which the district nurse should be able to act as an information resource and advocate for carers. Further detail of the dissatisfaction in relation to information can be found in Figure 2. Warner and Wexler (1998) in a survey conducted for The Princess Royal Trust for Carers also identified concerns regarding information sharing. They received a response rate of 4
just less than 30% (1,985, n=7,000), whilst this is a low response rate it perhaps reflects the time demands of informal carers within the course of a normal week. 94% of respondents reported that they were involved in providing medical care and yet only 33% reported having received any training of guidance regarding this. This apparent lack of lack of training and guidance may reflect the fact that in some instances carers do not remember the training that took place. However it is unlikely that this would account for the remaining 67%, this suggests that partnership between health care professionals and carers was not yet in place at the time of the survey. It would be optimistic to consider that in more recent times this lack of partnership between health care professionals and informal carers had been addressed. In interviews with respondents (n=7) who had been involved in caring for a spouse post CVA for between 2 4 years similar issues were raised (Brereton & Nolan 2000). Respondents reported that they found information from book and by observing staff, expressing the view that they were going it alone. Further that they felt inadequate in relation to the caring role and sought information to overcome their perceived weakness in the role of informal carer. The feeling of incompetence in relation to informal caring was further compounded by the lack of recognition that they had expert knowledge regarding their spouse. Similarly, interviews with 14 carers (n=58) aged 75 years plus identified a desire for their role to be recognised by health professionals and the need for reassurance that they were doing the right thing (McGary & Arthur 2001). Dependants often had complex needs that were daunting, carers felt this wasn t always recognised and that they were overlooked during consultations. The value of expert knowledge had previously been acknowledged by Nolan et al (1996) who identified the informal carer as possessing knowledge including the cared for persons normal behaviour, biographical knowledge of the past and present as well as the likes and dislikes of their dependent. District nurses and informal carers The importance of partnership between the district nurse, dependent and informal care has been identified throughout the policy and legislation of the current government. In 5
addition the importance of recognising patients and carers as individuals who should be involved in the team where delivering care is also a key tenant of the Code of Professional Conduct (NMC 2004). Despite this, research suggests that district nurses continue to face challenges in relation to working with informal carers. Identification of informal carers is the first step to insuring that they receive appropriate support and partnership is used to develop packages of care. District nurses need to be aware that when visiting a patient in their own home anyone, including grandchildren and neighbours, may take be providing informal care. Equally a visit to provide short-term care such as the removal of sutures may also provide an opportunity to identify informal carers that previously have not accessed support from health and social care but may well benefit from input. Benzin et al (2004) conducted a focus group with five district nurses in Sweden on three separate occasions over a period of four months. Although this was small sample and the research was conducted in Sweden the findings do appear to have resonance with district nursing within the United Kingdom. The district nurses in the study considered informal carers to be both a resource and a burden. This was articulated by consideration of the investment of time required to involve informal carers in the care planning and delivery, however this was considered to be timesaving in the long run. This appears to be at odds with the notion of informal carers being entitled to an individual assessment and to participate as partners in decision-making regarding packages of care. However, the district nurses involved in the study felt that if when families were involved in care provision patients experienced a deeper sense of well being. In order to achieve family involvement establishing good communication from the beginning was considered to be important (Benzin et al 2004). If good communication were established early within the care trajectory it would decrease the feeling by carers that they are lacking information regarding the illness pathway, treatment and medication. Pickard and Glendinning (2002) reported that one informal carer felt that the district nurse took over the home when she visited and made the carer feel as if she were a visitor in her own home. In the same study one district 6
nurse reported that she did not always offer respite care citing one lady who she felt was coping well. In effect this unwitting gatekeeping reduces the possibility of informal carers receiving a service which meets not only the needs of the cared for person but also the carer. Partnership between informal carers and district nurses A review of the literature concerned with the satisfaction of informal carers in relation to health and social care has identified involvement in decision-making and the sharing of information were causes of dissatisfaction. It is important to revisit partnership, a central tenant of current health and social care policy, and consider its impact on dependants and informal carers. Salvage (1992) suggested that partnership focuses upon improving knowledge and skills through sharing of information, maximising independence, respecting and giving choice and focusing upon individual needs. Henderson (2003) conducted interviews and participant observation in 4 hospitals in Western Australia, this study identified the importance of partnership and the positive impact it has upon patients and carers. Since patients and carers are experts in their own lives they are in a position to make an invaluable contribution to decision making in relation to care, in Henderson s (2003) study this was found to reduce vulnerability within the hospital setting. True partnership may reduce the feeling expressed that carers felt that the district nurse took over the home (Pickard and Glendinning 2002). District nurses work across several complex boundaries; that of the primary secondary care interface within health, alongside the boundaries between health and social care (Goodman et al 2003) and are well placed to co-ordinate care (Bliss 2000). It is important that district nurses maximise this opportunity to involve informal carers within the decision making regarding care. Previously this has not always been the case with family carers not being explicitly involved in the decision making process and planning around care giving. Rather the activities already performed carers were often used as the foundation for care plans when DN became involved (Pickard & Glendinning 2002), this is at odds with the notion that carers should be able to make a choice to be carers and 7
receive appropriate support when needed (DoH 1999). One example of the need to involve informal carers in decision-making processes is medication management. Smith et al (2003) conducted home interviews with 184 (n=287) carers regarding medication management, some carers reported adjusting doses of medication in order to meet their own commitments. This would suggest that carer burden and competing demands could be used to inform consequent changes to drug therapy e.g. timing and frequency of dose, sensitivity to the relationship between carer and recipient of care. Carers also reported concerns regarding interpreting information e.g. about side effects; district nurses can provide individualised information, which allows carers to be involved in decision making. For practice to reflect policy and legislation and meet the needs of informal carers district nurses need to be proactive when working with informal carers and establish local policies and protocols for working in partnership with informal carers. The key points identified by The Princess Royal Trust for Carers (2005) for general practitioners provide a useful checklist for district nurses, see figure 3. The World Health Organisation (2002) has identified primary health care as the best channel to provide support for informal carers offering further support to district nurses wishing to develop partnership working with informal carers. References Benzin E., Johansson B. & Saveman B. (2004): Families in home care - a resource or a burden? District nurses' beliefs. Journal of Clinical Nursing 13, 867-875. Bliss J. (2000): Palliative Care in the Community. British Journal of Community Nursing 5, 390-395. Brereton L. & Nolan M. (2000): 'You do know he's had a stroke, don't you?' Preparation for family care-giving - the neglected dimension. Journal of Clinical Nursing 9, 498-506. 8
Carers (Equal Opportunities) Act (2004) Chapter 15. The Stationery Office. London. Carers (Recognition and Services) Act (1995) Chapter 12. HMSO. London. Department of Health (1999) Caring about Carers A National Strategy for Carers. Department of Health. London. Department of Health (2001) National Service Framework for Older People. Department of Health. London. Department of Health (2004) Health and Social care Standards and Planning Framework 2005/06-2007/08. Department of Health. London. Goodman C., Ross F., Mackenzie A. & Vernon S. (2003): A portrait of district nursing: its contribution to primary health care. Journal of Interprofessional Care 17, 97-108. Henderson S. (2003): Power imbalance between nurses and patients: a potential inhibitor of partnership. Journal of Clinical Nursing 12, 501-508. Henwood M. (1998) Invisible and Ignored? Carers National Association. London. Ingelton C., Morgan J., Hughes P., Noble B., Evans A. & Clark D. (2004): Carer satisfaction with end-of-life care in Powys, wales: a cross-sectional survey. Health & Social Care in the Community 21, 43-52. McGary J. & Arthur A. (2001): Informal caring in late life: a qualitative study of the experiences of older carers. Journal of Advanced Nursing 33, 182-189. Nolan M., Grant G. & Keady J. (1996): The Carers Act: realsiing the potential. Bristish Journal of Community Health Nursing 1, 317-321. Nursing & Midwifery Council (2004) The NMC Code of Professional Conduct: Standards for conduct, performance and ethics. MNC. London. Office of National Statistics (2005) 2000/2001 General Household Survey. Office of National Statistics. available at www.statistics.gov.uk (accessed 16.04.2005). Pickard S. & Glendinning C. (2002): Comparing and contrasting the role of family carers and nurses in the domestic health care of frail older people. Health & Social Care in the Community 10, 144-150. Salvage J. (1992): The theory and practice of new nursing. Nursing Times 86, 42-45. Smith F., Francis S., Gray N., Denham M. & Graffy J. (2003): A mulit-centre survey among informal carers who manage medication for older care recipients: 9
problems experienced and development of services. Health & Social Care in the Community 11, 138-145. The Princess Royal Trust for Carers (2005) The Princess Royal Trust for Carers urges GPs to make small changes to help carers (press release). The Princess Royal Trust for Carers, available at www.carers.org/news (accessed 16.04.2005). Walker A. (1995) Integrating the family in the mixed economy of care. In The Future of Family care for Older People (I. Allen & E. Perkins, eds). HMSO, London, pp. 201-220. Warner L. & Wexler S. (1998) Eight Hours a Day and Taken for Granted? The Princess Royal Trust for Carers. London. World Health Organisation (2002) Ageing and Health. World Health Organisation. Geneva. 10
Figure 1. Types of help given to main person cared for by sex of carer 1, 2000/01 Great Britain Percentage of carers Males Females All carers Other practical help 71 72 71 Giving medicines 19 24 22 Personal care 22 30 26 Physical help 36 35 35 Paperwork or financial 37 41 39 matters Keeping company 50 58 55 Taking out 52 51 52 Keeping an eye on person cared for 56 63 60 Source: General Household Survey, Office for National Statistics 11
Figure 2. Carers were not satisfied with information about: Health of the person cared for 17% Treatment 15% Prescribed medication 13% Purpose of medication 15% Possible side effects 31% Avoiding combinations of medication 30% Changes in medication or treatment 20% Henwood 1998 12
Figure 3 Check list The Princess Royal Trust 2005 1. Remember that anyone can be a carer, male female, young or old 2. Put a carers notice board in your reception area, with up to date carers support information 3. Remember some carers need to organise people to sit with the person they care for. Therefore please ensure carers are given flexibility over booking appointments and try to see them promptly 4. Work alongside carers centres and social services departments to build a directory of services that ensure that the carer has all the support they need. 5. Keep key staff in the practice up to date with the carers and cared for condition, so that they can make informed judgements when dealing with the carer. 13
Key points District nurses need to be proactive in developing local policies and procedures for partnership with informal carers. The district nurse is well placed to co-ordinate appropriate services once the need has been identified. Communication is central to developing effective partnership Informal carers and their dependants should be involved in all levels of decision making Useful links can be found at www.carers.gov.uk 14