We use the term 'carer' to describe someone who provides regular, unpaid support to a person who uses mental health services. This could be a family member, partner or close friend.
Sometimes, children are involved in helping to look after a family member who has mental health problems, or who is addicted to drugs or alcohol. This might involve shopping, cleaning, cooking or looking after a younger sister or brother.
Carers and families play a vital role in helping people with their mental health problems. It can be difficult and lonely, and some people do not know how to get help from the NHS. One of the aims of this website is to try and provide carers and families with better information about what we do.
Our commitment to you as a carer is that we will always do our best to support you. We will…
- listen to you
- respond to your questions and concerns
- respect your views
- provide you with practical advice and support
If you feel we are not doing any of these things well enough, then please tell us.
Wherever we can, we will share information with you. However, we always have to respect a person's right to confidentiality. To help us do this, we talk to the people who use our services and discuss what information they are happy for us to share about their care and treatment.
Sometimes, the person asks us not to share certain information. In these cases, we do our best to give families and carers as much information as we can. We know this can be frustrating, especially when you are the person who provides day to day support to someone. However, we have to respect the wishes of the people who use our services.
It can be helpful to talk about this issue with mental health staff, and the person you care for, so that we can find a solution that works for everyone.
We have a procedure for responding to requests by carers or family members to see someone's medical records. We know that this can be frustrating. The reason why we cannot simply release records is because we have a duty of confidentiality towards the people who use our services.
If you are the parent or guardian of a child under 16 then you need to put your request in writing to:
Data Protection Office, Maudsley Hospital, Denmark Hill, London SE5 8AZ
We are required by law to respond within 40 days, though we always try to do so more quickly. If the child is over the age of 12, then the clinical team may ask for his or her consent before the records are shared.
If you are the carer or family member of an adult who is using our services, then we will need his or her permission to release medical records to you. If someone is unable to make this kind of decision because of a lack of mental capacity, then a decision on whether to share the records may be taken by a legal representative such as a solicitor. If there isn't a legal representative, then the clinical team will make the decision.
Keeping you informed and up to date is an important part of our job. We want to help you understand the care and treatment we provide. If you are confused or concerned about anything then please ask us. As a carer, you also have the right to ask for an assessment of your own needs. Please talk to a member of staff about this.
As a carer you should receive the name of the team that is providing a service to your family member or friend. You should also receive the team's full contact details and the name of the person responsible for their care.
If you don't know the name of the team member providing the service you can contact the team and ask to speak with the care co-ordinator, giving the name of your friend or relative
Here are some of the questions that you may find helpful to ask the clinical team…
About the diagnosis
- What illness (diagnosis) does the person I care for have?
- What does the diagnosis mean?
- What are the likely causes?
- Will the person recover?
If a diagnosis has been made
- What symptoms and signs suggest this?
- What is known about the causes?
- What is likely to happen in the future?
- Will it get better or worse?
- Where can I get written information about this condition?
- If a diagnosis has not been made, what are the possibilities?
About care and treatment
- What are the aims of the care and treatment?
- What is the role of the care coordinator? (this is the person in the clinical team who is your main point of contact)
- Who else will be involved in the treatment?
- How often will appointments be made to see a member of the clinical team, and which member of the team will this involve?
- What is your plan for treatment and support?
- How long will this treatment last?
- Would psychotherapy (talking treatment) help? Is it available close to where I live?
- What happens if the service user refuses treatment?
- What support and services are available for carers and families, and how do I get access to them?
- If the person I care for has to go into hospital, which one would it be?
- What arrangements will be made for care to be given once he or she leaves hospital?
Discharge from hospital
- If the person I care for is discharged and I am unable to look after him or her, what will happen?
- What arrangements will be made for the care of the person after he or she is discharged?
- Are there any self-help techniques that might help?
- Can I have a copy of the aftercare plan?
If a hospital admission has not happened
- Does the person I care for need to be admitted to hospital?
- What alternatives to hospital admission are available?
- What medication is being used and why?
- Is the lowest effective dose being prescribed?
- Can the dose by increased when necessary?
- How often will the medication be reviewed?
- What are the short and long term benefits?
- Are there any short or long term side effects?
Can you provide written information about the medication?
The Care Programme Approach (CPA) describes what support people should receive from mental health services. As part of the CPA, staff work with service users to develop a care plan. This is a written agreement which describes what support that person will receive, from whom and when - as well as what to do in the event of a crisis. The care plan that is developed should make sense, be helpful and reflect what the person receiving services thinks and feels.
If someone needs support from more than one service, then they will be allocated a care co-ordinator (also called a 'lead clinician') who will organise this.
The word 'crisis' means different things to different people. Within mental health, it usually refers to a situation where someone is rapidly becoming unwell and those around them feel unable to cope. It can be helpful to think about how you might respond to a crisis before it happens. For example, to agree on who should be contacted in a crisis and what type of support would be preferred.
Crisis planning is an important part of the Care Programme Approach process. A plan setting out what should happen if a service user becomes unwell should be discussed and included in the care plan. This is known as the 'crisis plan'. Involving carers in crisis planning is important as they are often the first to notice a problem. A crisis plan should include information about what might increase the risk of a relapse, possible warning signs of a relapse, details of who will do what, and contact information for support from SLaM.
SLaM's 24 hour information line is available seven days a week and can provide information about how to get help. Tel: 0800 731 2864.
Other sources of help in a crisis:
- GP service
- NHS Direct offers heath advice and information on a 24 hour basis. Tel: 0845 4647
- Most accident and emergency department have specialist mental health staff on duty 24 hours a day, seven days a week. They can assess people and give advice on getting appropriate help.
In situations where there is an immediate risk of harm, the police or ambulance service can be called by dialling 999.
You can find out more about what a carer's assessment involves in this short film.
Here's a short interview with Roger Oliver, who has experience himself of being a carer.