Supporting carers to cope
Carers are a huge source of support. With an ageing population and more people asking to die at home or in community settings, care is increasingly provided by families and friends.
Carers often suffer ill-health caused by their caring role. All carers need services that recognise them as individuals and support their changing needs. These needs should be assessed alongside the needs of the patient.
About a quarter of all people who die are living in a registered care or nursing home. They may have a partner but most of their care will come from unqualified staff. Typically most homes take seriously the idea that they are a person's home and will want to support them throughout their last year or so (most residents are frail on admission and die within 18 months of moving into institutional care).
However, you should not assume that staff are any more likely than lay carers to feel confident about managing the crises and exacerbations which may occur towards the end of life. For all carers, whether family, friend or professional, it is essential that a person's plan and preferences are shared with those who will be providing the bulk of care if it is to be realistic and sustainable (subject to the patient's consent). The carer (lay or professional) may need advice or training from you or other members of the multi-disciplinary team in coping with and knowing how to respond to common problems so that they do not default to emergency care in panic, unless that is what is needed and the preference of the patient.
GPs can support carers by:
- Establishing who is in the social network of informal carers.
- Involving carers in the planning of care.
- Providing information about the condition the patient is suffering from.
- Providing local information about services and support.
- Encouraging formal carer assessment where appropriate via social workers or community nurses.
- Being an advocate to the carer for accessing equipment, benefits and resources.
- Providing key worker liaison with other services and within the MDT.
- Responding quickly and sympathetically to crisis situations.
- Encouraging carers to help plan palliative care services in their area.
- Supporting carers to stay well in mind and body.
- Identifying the need for bereavement support.
Dying Matters has a wealth of resources to offer patients and carers around end of life care:
NHS Choices: End of Life Care also has some useful guidance, as may condition-specific sites such as Macmillan. In addition, Planning For Your Future Care: A Guide, produced by NEoLCP, NCPC and the University of Nottingham, is a useful and well written handout for patients and carers.
Support and guidance to help GPs and Primary Care Teams care well for patients nearing the end of life can be found in the
Royal College of General Practitioners (RCGP) and the Royal College of Nursing’s (RCN) End of Life Charter.
- Why do carers need support? The Princess Royal Trust for Carers.
- Recognised, valued and supported: What happens next for the carers strategy (2010) - Department of Health.
- NHS Choices: Carers and end of life care.
- Support for carers guidance: Marie Curie and Macmillan.
- Dying Matters material aimed at carers includes:
‘One last thing’ leaflet: information to help those close to someone elderly or ill (pictured right)
‘I could do with a chat’ leaflet: How to help someone close to you who has been bereaved
‘Remember when we’... leaflet: Starting the conversation if someone close to you is dying