Becoming a carer
Nothing really prepares you for becoming a carer. As individuals we all respond differently and it’s important that you acknowledge how you feel. You may feel frightened about the future, guilty that you could have done more, angry that this has happened and confused about what happens next. These are all understandable reactions to the situation you now find yourself in.
You may have an overwhelming need to protect the person you love and ‘make them better’. Just remember though, that when someone breaks a leg, you cannot ‘mend it’ for them but you can be there to support them if they ask for your help. Recovering from a mental health condition is a little similar. There are many things you can do to enable your loved ones recovery but you also need to look after yourself as well. Together you are on a journey and when the person you care for is struggling you have to hold hope for them. Holding hope for someone you care for while standing back and allowing them to recover in their own time is hard.
Remind yourself of their skills, talents, strengths, and interests. Try not to let that person become hidden by their symptoms and diagnosis – remember the person behind the diagnosis. This is holding hope. As the person who knows them best this is one of the most important things you can do to enable their recovery.
The other important thing is to listen. Your loved one may need more space than usual to work out what has happened to them. On the other hand, they may be frightened of being left alone and need your support. Listen, be flexible, ask how you can help, let them guide you on their recovery journey.
Take opportunities to gather information that can help you with the care and support you provide. Learn about mental health and social care services and their responsibility to you and the person you care for. Speak to staff and work together; you have knowledge and information about the person you care for, which can help the staff member to deliver the best care they can. Never be afraid to ask questions, meet other carers, join an organisation that understands your loved one’s condition, write a diary, record conversations with professionals if you have any concerns, but above all stay positive. There may be times when you feel overwhelmed or discouraged, but there may also be times when you see the person you care for make progress towards a meaningful and fulfilling life.
Nearest Relative
A person’s Nearest Relative (NR) has a number of rights regarding the care and treatment of the person. The NR is not the same as the person’s next of kin (although they may be the same person). The NR is the individual dictated by the Mental Health Act, there is a list which gives the order of whom the NR will be based on age and relation to the person.
Nearest relative rights:
- To receive certain information and be consulted in specific circumstances under the Mental Health Act, subject to confidentiality, capacity and data protection considerations.
- To request a Mental Health Act assessment.
- In some circumstances, the Nearest Relative may make an application for detention under section 3 of the Mental Health Act.
- To be consulted when the person is being assessed under the Mental Health Act
- To order discharge from certain sections of the Mental Health Act, Community Treatment Orders unless the responsible clinician bars the discharge where the legal criteria are met. With Guardianship (section 7) a Nearest Relative can discharge a person from a Guardianship order, and the Responsible Clinician has no power to issue a barring certificate to stop it.
- To have the NR status transferred to another individual
- To help the person access advocacy services where appropriate.
Confidentiality
The area of confidentiality is one which can cause concern for carers, people who use services and staff. The basic principle of confidentiality is that information given by a service user cannot be disclosed without their consent. However, a service user does not have the right to prevent a professional from engaging with carers, receiving information from them, listening to their views or from giving a carer information, advice and support.
One of the best ways to resolve any concerns about confidentiality is to have arrangements made in writing, such as in an Advance Statement. Here, people using services can detail what type of information can be shared, and with whom.
Carers should be offered general information about mental health conditions, treatments and available support services. Information about an individual’s diagnosis, medication or treatment may require consent unless another legal basis for sharing exists. They should be given information about any carer support groups, emotional or psychological support, the contact details of professional carers working with their friend/relative and any information which directly involves them, such as hospital discharge arrangements.
Information sharing
Issues of confidentiality and information sharing between mental health staff and carers of people using mental health service can be complex and difficult to resolve. Family members, loved ones, and friends often say that they feel excluded and ignored by staff, and sometimes this can have serious consequences for them or the people they support.
There are some key areas where confidentiality can be an issue:
- If the person using services does not consent to information being shared with the carer.
- Mental health staff not being confident in dealing with the complexities of confidentiality, leading to them giving no information at all.
- Professional codes and legal frameworks.
- Carers becoming stressed and frustrated, especially in a crisis, which may give staff a distorted view of how things usually are.
Whilst information given to staff by a person using services cannot be disclosed without their consent, this cannot prevent staff from engaging with carers, receiving information from them, listening to their views or from giving a carer information, advice and support.
In general, staff should:
- Identify any carers
- Determine if the person using services has capacity to decide not to share information
- Agree what information can be shared and with who (eg by using Advance Statements)
- Record consent details and review these regularly
- Explain to carers and people using services what information can be shared and what information cannot.
- Explain to carers that whilst confidentiality may restrict what professionals can share, a carer can share any information with professionals they think may help.
- Consider the potential harm of not sharing information with a carer (eg hospital discharge arrangements, medication).
- Offer one to one time to carers
- Advise the carer if they are named on the person’s care plan.
- Be fully aware that some information may be shared without consent, such as information needed to safeguard children or vulnerable adults.
Providing general information about mental health issues or offering emotional and practical support to a carer does not breach confidentiality. This could include:
- Confidentiality restrictions requested by the person using services.
- The role of each professional involved in the person’s care.
- Contact details of local or national carer support organisations.
- Contact details of health or social care professionals.
- Any discharge arrangements which directly impact on the carer.
- How to access help and support, including out of hours service contacts in the event of a crisis.
- Information about the workings of the Mental Health Act/Mental Capacity Act.
- Background information on medication.
Anyone with concerns about carers and confidentiality should contact their local service provider, as there may be specific policies in place.
The Care Act 2014 (updated April 2016)
The Care Act helps to improve people’s independence and wellbeing. It places a series of duties and responsibilities on local authorities about care and support for adults.
Local authorities have to consider various factors:
- what services, facilities and resources are already available in the area (for example local voluntary and community groups), and how these might help local people
- identifying people in the local area who might have care and support needs that are not being met
- identifying carers in the area who might have support needs that are not being met
A carer is someone of any age who helps another person, usually a relative or friend, in their day-to-day life. This is not someone who provides care professionally, or through a voluntary organisation.
The Care Act sets out carers’ legal rights to have an assessment of their need for support. The assessment considers the impact of caring on the carer and what a carer wants to achieve in their own day-to-day life. Another important issue to consider is whether they work or want to work, and whether they want to study or do more socially.
When the assessment is complete, the local authority must decide whether the carer’s needs are ‘eligible’ for support from the local authority. A support plan will be agreed setting out how the carer’s identified needs will be met. Examples of support may include respite care, help with caring responsibilities, emotional support, training, direct payments, or services that help the carer maintain their own health and wellbeing.
Many local authorities do not charge carers for services provided to meet carers’ assessed needs, although charging policies may vary locally.
The Care Act does not deal with assessment of people under the age of 18 who care for others. However, they can be supported under the law relating to children. The Children and Families Act (2014) gives young carers (and parent carers) similar rights to assessment as other carers have under the Care Act.