The contribution of carers to society is increasingly being recognised. It’s also widely accepted that carers are likely to know more about the needs of the people they care for than anyone else. Government guidance for health and social care professionals often emphasises the value of listening to carers and involving them in planning the care of the person they look after. The government national carers’ strategy, Carers at the heart of 21st century families and communities (PDF, 2.1mb), states that by 2018:
- Carers will be respected as expert care partners and will have access to the integrated and personalised services they need to support them in their caring role.
- Carers will be able to have a life of their own alongside their caring role.
- Carers will be supported so that they are not forced into financial hardship by their caring role.
- Carers will be supported to stay mentally and physically well and treated with dignity.
- Children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive, to enjoy positive childhoods.
Carer's tip from Netbuddy
"Make notes before attending a meeting with officials to ensure that you don’t forget things. Better still, take someone with you to the meeting so you can concentrate on the meeting and they can take notes".
Visit Netbuddy to read more carers' tips like this.
Social care support
Local authorities are the main source of social care support for carers and the people they care for. Services for the person you care for are often called community care services, and could include things like help with washing and dressing, meals on wheels, aids and adaptations or respite care.
If you provide regular and substantial care for someone who might need community care services, you have the right to an assessment of your own needs as a carer. You can find more information in the section about assessments.
Local authorities can support carers by providing services specifically for them, separate from services for the person who is cared for. Carers' services can include respite care and short breaks, advice and information, emotional support or help in the home.
You may also be able to get support from your local authority in the form of a direct payment. This is a cash payment that enables you to pay for something that you’ve identified to help you in your caring role. Direct payments are part of a move towards "personalised" social care, which aims to give people more choice and control about the support they get.
Contact your local authority to find out what support they offer to carers. You can find their contact details using our online directory, or by talking to one of our helpline advisors. You may be able to get other types of help from your local authority. For example, some councils provide welfare and benefits advice that’s available to all local residents.
Support from your GP
A GP is often the first point of contact for carers and the people they care for. Telling your GP about your caring role could help you get more support, as some GP practices offer services specifically for carers. These can include carers’ health checks, access to more convenient appointment times, or help from a carers' support worker.
The person you care for might need to spend time in hospital. Government guidance says that when the person you care for is admitted to hospital, you should be introduced to a member of staff, usually a nurse, who will act as your key point of contact. They should keep you informed and involve you in any decisions affecting you and the person you care for. Some hospitals also have carer support workers who can offer help and advice to carers while the person they look after is in hospital.
When they are discharged from hospital, they may need more support than before, particularly if there’s been a change in their condition. You may also need more support as their carer. Before someone is discharged, their needs should be assessed, and a discharge plan drawn up. You should be given information about how the discharge will be managed, and involved at every stage. The person you care for should not be discharged before their agreed support is in place.
If the person you care for will need support from social services when they’re discharged, the hospital must work with the local authority to arrange an assessment for this.
Some people with very severe health needs can get their care provided free through the NHS continuing healthcare scheme. If the person you care for may be eligible for continuing healthcare, the hospital should arrange for an assessment to be carried out before they are discharged.
Mental health support
There are strict rules regarding the confidentiality of mental health patients. If you care for someone with mental health problems, it can be difficult to get information about their condition and treatment and to be fully involved in their care. However, mental health professionals can work within the confidentiality rules and also include carers. The person you care for can give their permission for professionals to share information with you and involve you in decisions.
Mental health professionals can support you by:
- discussing confidentiality with the person you care for when they’re well, so they can decide what they would like to happen if they become ill
- keeping a record of whether someone’s given consent for information sharing in their notes
Even if the person you care for doesn’t give consent for staff to share information with you, this doesn’t prevent staff from giving you general information about mental illness and the support that could be available for you as a carer.
Not getting the support you need?
If you’re not happy with the support you’re getting from health or social services, there are actions you can take as well as sources of help.
See the sections on local authority complaints and health complaints for more information.
Advocacy organisations can help you access services and also provide advice about your rights and how to resolve disputes. To find local sources of help, you can search our directory of local carers’ services or call the Carers Direct helpline free on 0300 123 1053.
Getting involved in improving services
You may want to use your experience and expertise to help improve services for carers and the people they care for. Many carers do this, and there are different ways you can get involved.
Some health and social care organisations may already have systems in place for involving carers. These could include service user and carer networks, which provide an opportunity to raise specific issues and feed into service planning. Another way that carers could contribute is by helping to train staff in how they can better meet carers’ needs.
Staff at an organisation should be able to tell you whether there are opportunities for you to get involved. If nothing exists currently, you could find out if there’s a carers' lead or carers' champion who is responsible for making sure that carers’ needs are considered, and let them know if you have any feedback.
If you’re keen to improve services but aren’t sure how to start, you could get in touch with a local voluntary group or national organisation such as Partners in Policymaking. They run courses that train families and carers to work with local authorities to improve services for them and the people they care for.