Caring for someone with a mental illness

A carer is anyone who looks after someone else because they find it hard to look after themselves. Around 1 in 5 adults in the UK are carers. Over 800,000 young people aged 5-17 care for an adult or family member in England.

Some people don’t realise that they are carers, while others might not feel comfortable with being called a carer. They might see looking after someone else as something they have ‘just always done’.

Carers can be of any background, and can also experience physical or mental health problems themselves. They don’t always live with the person they are caring for and might visit them often, occasionally, or support them over the phone.

Some people will have a paid care worker who is trained to look after them. However, this information will not talk about professional care workers.

Carers might care for:

• a parent or parent-in-law
• their partner or spouse
• their children (both adult children and children under 18)
• another relative such as a grandparent
• a friend or neighbour.
  

Some carers provide care for more than one person and might provide different levels of care to different people. Sometimes having to care for different people with varied needs can cause challenges in itself.

“I care for two people - one I live with (my partner) and a parent I don't. My partner has reduced immunity from drugs for his illness. We have effectively been shielding due to Covid since March 2020. When Covid rates are high, I have the double-whammy of my parent being more worried, and having less social contact so depending more on me, and me being more anxious and less able to spend time with them because they are mixing with other people and I have to shield my partner.”  - Carer

There are lots of different reasons why someone might need a carer, including:

• physical illnesses or disabilities
• learning disabilities
• alcohol or substance misuse
• dementia
• mental illness.

Some people will have more than one reason for needing a carer. For example, they might have a physical disability and a mental illness.

Carers can provide lots of different kinds of support, depending on what they are able to do and the needs of the person they are caring for. Support can be:

• Practical – help with cooking, cleaning, laundry or shopping
• Healthcare related – help with taking medication, going to doctors’ appointments, doing physiotherapy, or anything else they need to do to stay well
• Emotional - keeping them company or spending quality time with them
• Social – taking them to appointments or to the shops
• Financial – help with money, care services or benefits
• Personal – help with washing, bathing and using the toilet
• Physical – help with moving around the house or performing physical tasks that they’re not able to do themselves

In the UK, 13% of carers care for someone with a mental illness.

Not everyone with a mental illness needs a carer, and not everyone who needs a carer has one. People with mental illnesses have lots of different needs like anyone else, and these will affect the support they need.

Someone who cares for a person with a mental illness might help them to:

• book, prepare for and attend appointments
• organise and take their medication
• do practical tasks that they might be physically able to do but find emotionally challenging. E.g. making phone calls or meal planning
• communicate their wishes, as in some cases people won’t be able to do this for themselves and might need their carer to do it for them
• recognise and accept their condition. This can help to encourage someone to take their medication, go to appointments and take care of their physical and mental health
• share information about their health. Carers might help to share information with health professionals if for some reason the person they care for can't do so.
  

When this support is needed will depend on the individual, and might be:

• all the time – some people will need help to do daily tasks or to leave the house
• at a particular time – some people will need support when they are going through a particular time in their life. For example, coming out of hospital or when they are very ill
• on particular occasions – some people will only need support when specific things are happening. For example, if they are going to a monthly appointment

“In my experience the most common support I give is listening, and helping my cared-for think about ways to calm themselves. I also spend a lot of time just keeping them company to reduce loneliness. I reassure them that they are loved, valued, doing their best and have got through difficulties before. Whilst acknowledging how they feel today and showing understanding.” - Carer

If you care for someone, you will probably know a lot about their diagnosis, treatment and care. You will probably also know a lot about their likes and dislikes, and their personal history. It is well known that carers play a vital role in ensuring patients get the best care possible.

However, how decisions are made about a person’s medical care, and how involved you will be in those decisions, will depend on lots of things:

• the laws around confidentiality, consent and capacity
• the wishes of the person you care for
• the approach of healthcare professionals.

Can healthcare professionals share information with me?

Usually, the person you care for will give permission for their information to be shared with you. If this is the case, healthcare professionals should share information with you that will benefit the person you care for.

However, there might be times when the person you care for doesn’t agree for their information to be shared with you. When this happens, healthcare professionals won’t be able to share information with you, except in specific circumstances. You can find out more about these below.

Can I share information with healthcare professionals?

As a carer, you can share information with healthcare professionals that you think will be helpful. This is allowed even if healthcare professionals can’t share information with you.

Unless the person you care for has asked healthcare professionals not to talk or listen to you, they should listen to the information you have to share. They should also consider how it might help with care and treatment.

The laws surrounding information sharing, confidentiality and consent are complicated. We have included some information about them below, but aren’t able to cover everything here.

How does confidentiality work?

Everyone has a right to confidentiality when it comes to their health information.

This means that individuals can decide who accesses their information. It also means that healthcare professionals are legally required to keep someone’s personal information private.

There are some circumstances where healthcare professionals might be able to share their patient’s information with others:

• if their patient says they can
• if it would be in the best interests of their patient. Their patient must lack the capacity to make that decision themselves (find out more about capacity below)
• if it is required by law
• if it will protect their patient, or other people, from harm.

Even in these circumstances, health professionals should:

• only share the information that is necessary
• only share it with the people who their patient has consented for their information to be shared with.

Whenever information is shared, healthcare professionals should record how and why this was done.

How does consent work?

Usually, people with mental illnesses need to agree to have treatments or for their information to be shared. This is called giving consent.

Consent has to be ‘informed’, which means that:

• the person has been given the information they need to make a decision
• the person can make a decision without being influenced or pressured by someone else
• the person has communicated their consent.

How does capacity work?

Having capacity means being able to understand information and make decisions based on that information.

Sometimes, people might be said to ‘lack capacity’, which can affect their ability to consent. To lack capacity, someone must have:

• a condition that affects their brain or mind

AND

• that condition means they can’t make a decision.

Being unable to make a decision means that someone can’t:

• understand information
• retain that information
• use that information to make a decision.

For this reason, having a mental illness or a learning disability does not mean that you automatically lack capacity.

Capacity can change and needs to be assessed at the time that consent is needed. People can have capacity to make some decisions and not others, so it must be tested for each decision.

If someone lacks capacity, they might be given treatments, and have their information shared without their consent. However, someone’s information should still only be shared when it is absolutely necessary. Their information should also only be shared with the people they have agreed for it to be shared with.

Care should still be taken to treat their information confidentially.

What about being sectioned?

Being sectioned or ‘detained’ means that someone is kept in hospital without their consent, by law. This is so that they can get the care they need and aren’t a risk to themselves or others. There are different kinds of sections that are used for different reasons. Depending on the kind of section, you will have to stay in hospital for different lengths of time.

You don’t have to lack capacity to be sectioned.

If someone is sectioned, healthcare professionals will need to decide:

• who their information should be shared with
• what information should be shared.

They will need to balance the safety of the person they are caring for with the legal requirements of confidentiality.

The College has a resource on being sectioned, which covers England and Wales.

What about in an emergency?

In an emergency, it might be decided that a treatment is needed to save someone’s life. If this happens, it might be given without their consent.

How can I plan ahead?

There are ways for you and the person you care for to plan ahead in case they can’t consent in the future. This can help them to decide ahead of time who should be involved in their care if they cannot be.

You can find out more about this on Rethink Mental Illness' website. Carers can help to make these plans, and Carers UK have information about managing someone’s affairs on their website. 

If you are someone’s carer, you will probably know a lot about their treatment, their history and how they feel and act day-to-day. You can help medical professionals to understand the needs of the person you are caring for by:

Speaking to the person you are caring for

Try to work with the person you care for as much as possible to understand:

• how much they want you to be involved in their care
• which areas of their care they want you to be involved in.

Encourage them to share their wishes with the people who are treating them. These conversations might need to happen more than once.

Encouraging them to be involved in their own care

The person you care for might be happy for you to be very involved in their care. However, they should still be encouraged to be involved in decisions about their care. You should also make sure that they have all the information they need to make these decisions.

If you are at an appointment, it can help to ask the person you care for:

• if they have understood everything that has been said
• if they have any questions.

How much they want to be involved in their care might change over time, so checking in regularly can be helpful.

Respecting their boundaries

In some cases, the person you care for might not want you to be involved. This can be frustrating, especially if you feel that they are making bad decisions. You usually can’t make people get help if they don’t want it. However, you can encourage them to speak to the people treating them.

If they are a risk to themselves or someone else, you can contact the emergency services or their mental health team. Even if you can’t help directly, you can continue to support them by:

• keeping notes
• listening to anything they raise
• helping to support them ahead of appointments.

Making a plan

When the person you care for is feeling ‘well’, it might be helpful for you both to come up with a plan for what to do when they are unwell. For example, you could:

• agree together what the ‘warning signs’ are when they are becoming unwell
• work out what has helped them in the past
• encourage them to share this plan with the people who are treating them.

Having a routine

Encourage the person you care for to keep up any hobbies and interests they have. You could also encourage them to join support groups or activities that match their interests, background and culture. You don’t need to put pressure on them, but checking in occasionally will give them the opportunity to get involved when they feel able to.

What if medical professionals won't work with me?

Sometimes medical professionals won’t want to share information with carers, even if the person they are caring for has given consent. This can feel very disheartening, but it isn’t a reflection on you or the person you care for.

Try to speak to them to find out why this is. If you think they do not have a good reason, you can make a complaint. You can find out more about this on the Rethink Mental Illness website.

Try to form positive relationships between yourself (the carer), the person you care for, and the people involved in their care. Although this can be easier said than done, it can help to:

• give professionals a clearer picture of what is happening
• help professionals to understand how much help and support you can offer the person you are caring for
• reassure the person you care for that someone close to them will be involved in their care when they are unwell
• build trust between the person you care for and the professionals treating them
• give you a clearer idea of the choices available and what to expect
• ensure the care someone receives is focused on them as an individual
• help you to get the support you need as a carer.

Preparing for a medical appointment will make sure that you both get the best care and support.

Before an appointment

Between appointments, you and the person you care for might want to keep a note of:

• any new worries or changes in mood, thoughts and behaviour
• when these changes started
• any stressful things that have happened in your lives that might be causing you difficulties, or might do in the future
• any medication or treatment side-effects.

Try to include the dates of any changes or reactions.

If the person you are caring for has a serious reaction to a medication or treatment, call 999 straight away. The NHS website has information on when to call 999 if someone is having an allergic reaction.

Just before your appointment

Before your appointment, you and the person you care for might want to agree which things you both would most like to discuss at the appointment. You might also want to write down your top three concerns to make sure that you discuss these. Take these notes with you. They could include:

• changes in symptoms and behaviour
• side-effects of medication
• general physical health, e.g. putting on or losing weight
• any extra help you need as a carer. 

At your appointment

During your appointment, you may want to try some of the following things:

• Ask questions - Especially if you or the person you care for don’t understand something.
• Encourage sharing - Encourage the person you care for to tell the medical professional how they feel.
• Time alone - Ask the person you care for if they would find it helpful to have time alone with the medical professional.
• Cultural considerations - Make sure the medical professional is made aware of any cultural considerations. For example, the person you care for might use certain words to talk about their mental health. Or they might find it uncomfortable talking about certain topics.
• Take notes of what you are told - At the end, tell the medical professional what you and the person you care for understand of what you have been told. This will help to clear up any misunderstandings or things that have been missed.
• Take your time - If you feel like you are being rushed, remember that it’s okay to take the time you need to get the most out of the appointment.
• Next steps - Find out what the next steps are. For example, follow-up appointments, medication reviews or tests, or referrals to other teams.
• Stay calm - It can be challenging to stay calm, especially if you are feeling upset or frustrated. However, trying to do so as much as you can will help to make the appointment as productive as it can be.

Below are some questions that you or the person you care for might find it helpful to ask at an appointment.

• Can you explain what the diagnosis means? 
• What can we expect now and in the future?
• What treatments are available?
• Why have you chosen this particular treatment?
• What is the evidence for this type of treatment?
• How long will it take for the medication to work?
• How long will the person have to take the medication?
• What are the possible side-effects - and how common (or uncommon) are they? 
• Who should I speak to if I am having side effects?
• Would psychological therapies be helpful?
• How often should the person come to see you?
• Are there things we can do to help ourselves?
• Is it safe for the person to drive?
• Do you have any information or materials you can recommend about conditions or treatments? If not, who does?
• Are there any organisations or local community services that could help?
• Who do we contact if we need help 'out of hours'?

If you need a follow-up appointment, you might want to arrange it before you leave if this is possible.

As a carer, you might experience a lot of different challenges. You might experience difficult emotions about the person you care for, including:

• stress from the pressures of caring for someone all the time
• worry about the safety of the person you’re caring for
• concerns about their future
• anger about your own life being 'put on hold'
• guilt, shame or sadness about their illness
• frustration with or fear of the way they act or the things they do
• feeling isolated from family and friends who don’t understand what you are experiencing.
  

You might also have concerns about yourself or frustrations that come with being a carer. These might include:

• challenges with coping and asking for help
• concerns about the future
• concerns about money, housing, family or other things happening in your own life
• fear of stigma, and what other people might be thinking or saying
• exhaustion from listening and caring
• losing your sense of ‘self'
• carer burnout.
  

Being a carer can also be a very rewarding job. The experiences carers have can vary hugely from person to person.

If you are finding being a carer challenging, help and support are available. Here are some things you can do to support yourself:

Share your worries

Speak with trusted friends, family or a carer support group about how you’re feeling. It can be difficult to focus on your own feelings instead of the person you care for, but you are just as important. Remember to respect the right to privacy of the person you are caring for. It might be helpful to speak to someone who doesn’t know them.

Don’t struggle on alone

You might feel as though asking for help for yourself isn’t important. But you won’t be able to care for other people if you don’t also care for yourself.

Make time for yourself

Put time aside for activities that give you a sense of enjoyment or satisfaction. This could mean something like going to a café with a friend, if you are able to leave the person you care for alone. If you don’t have much free time or aren’t able to leave the house, Carers UK hold ‘Share and Learn online sessions’. These are fun, relaxed online sessions where visiting speakers share tips and skills on different topics.

Take care of your own physical health

Make sure you eat well and get enough exercise. Family and friends might want to help but not know what to do. If you can’t go to the shops or cook for yourself, you could ask them to cook you a meal. Or they could bring you dinner and eat it with you.

Take care of your own mental health

In a survey, 8 in 10 carers said that they had felt lonely or socially isolated. It’s important to take your own mental health seriously. If you start to feel that your mental health is getting bad, speak to your GP. They are there to support you, as well as the person you care for.

Get a break

Make sure that you take time away from caring if you can. If you don't know anyone who can help, you might be able to use a professional caring service instead. Find out more about getting a break on the Carers Trust website and on the Carers UK website.

Access support for carers

For example:

• carer discounts in certain shops and for leisure activities
• Carer's Allowance and other benefits
• carer's assessments
• workplace support like flexible or hybrid working.
  

Join a local carers’ support group

Here, you can meet and speak to people with similar experiences to you.

Planning ahead

Work with the person you care for to plan for the future. This could include:

• financial planning
• planning in case of an emergency
• deciding who will make decisions about the person’s care if they can’t
• advance care planning.

Find out more about planning ahead on the Carers UK website.

Tell your GP you’re a carer

By telling your GP that you are a carer, they will be able to support you effectively. As a carer you are entitled to a free flu vaccine. Your GP might also be able to offer you some other adjustments to make life easier.

If you care for someone with a mental illness, there might be times where they talk to you about having suicidal thoughts (wanting to end their own life). You might have to have lots of conversations about these feelings, which can be upsetting and exhausting.

The mental health charity Mind has information on talking to someone about suicidal feelings. They also have information on making a support plan. This is where the person you care for can write down how they would like to be supported, and how they can support themselves when they are struggling.

Remember, talking to someone about their suicidal feelings will not make them more likely to act on them.

If you think the person you care for is in immediate danger, call 999.

It is also very important to look after yourself if you have been supporting someone who is suicidal. You might find it helpful to speak to someone you know about how you are feeling.

If you don’t feel comfortable speaking to someone you know, you could contact the Samaritans on 116 123, or by emailing jo@samaritans.org.

Carers can be entitled to financial and practical support. Remember, even if you don’t see yourself as a carer or use that word to describe what you do, you may still be entitled to carer’s benefits. You can read more about benefits in the College's benefits resource. 

Carer’s Allowance

To be eligible for Carer’s Allowance you have to meet certain requirements. You can find out more about these and how to apply on the Carers UK website.

Carer’s Credit

If you care for someone you might not be able to do paid work, or work as much as you might do otherwise. Carer’s Credit is a National Insurance credit that allows you to care for someone without this affecting your State Pension.

You will be entitled to Carer’s Credit if you care for someone for at least 20 hours a week.

Find out more about Carer’s Credit on the Government website.

Carer’s assessment

If you are a carer, you are entitled to a carer’s assessment. This will usually be done through your council’s adult social services. In this assessment, the person doing it will consider what could make your life easier. This can include financial, practical and emotional support.

Find out more about carer’s assessments on the NHS website. 

Young carers are people under the age of 18 who spend time caring for a friend or family member. As children, young carers have different rights and support available to them.

As with adult carers, mental health professionals should share information with young carers where appropriate.

Young carers should also receive a carer’s assessment to ensure they are getting the right level of support.

You can find out more about being a young carer in our resource that looks at when a parent has a mental illness. 

Medical and social care professionals can help to support people living with a mental illness and those who care for them. Here are some things you might want to think about when working with someone with a mental illness and their carer:

When meeting with a patient and their carer, make sure there is enough time to:

• listen to what they are saying to you, and ask appropriate questions
• find out about their life history
• ask about any traumatic events they might have experienced, e.g. bereavements, abuse
• explain why you have given them a diagnosis
• talk about what the person can expect now and in the future
• allow for questions and discussion.

When thinking about care and treatment, remember to:

• discuss all possible treatments including medical, psychological and self-help
• talk about the possible side-effects of medication and how to manage them
• discuss how to meet the care needs of both the patient and the carer. Remember that caring might affect multiple members of a family
• talk about positive outcomes
• spend time asking about the carer’s physical and emotional health.

Finally, here are some points to remember:

• Bringing someone to an appointment - Before an appointment, remember to tell the person you are treating that they can bring someone with them for support.
• Working with carers - Carers often know the person they care for better than anyone else, and can provide helpful advice and information. Taking their role seriously can be helpful for everyone, including the person you are treating.
• Out-of-hours contacts – Make sure there is a professional available who the person and their carer can contact during working hours. Give an ‘out of hours’ telephone number.
• Discussing labels – Many carers don’t see themselves as carers or aren’t comfortable with the label. You can help by explaining the benefits of this label. For example, how it can enable the person to get the support they are entitled to.
• Young carers - If there are young carers and young adult carers in the family, share or refer them to age-appropriate support.
• Sharing information - Make sure that the patient and carer have the information they need about:
  • their care and treatment
  • local services available. For example, exercise, nutrition or self-help groups
  • advice and support from their local social services department. For example, carer’s assessment, respite, housing support, and practical help in the home
  • relevant mental health or carer organisations.
• Avoiding jargon - Where possible, try to use language that is easy to understand, and avoid unnecessary jargon.
• Managing expectations - Set realistic timelines and manage expectations. It’s important to be clear about the support available and how long it could take to access it.
• Admission to in-patient services - If a patient is admitted to an NHS Assessment Unit or other in-patient service, make sure that the family is given clear information. For example, information about visits, treatment and expected outcomes, and the details of a named member of staff they can contact.
• Letter copies - Ask the patient whether they would like copies of any letters or reports that have been made about them. You can also ask if the patient would like their carer to see copies as well. Any correspondence you share should be clear, and jargon should be avoided or explained.

The following charities and organisations can offer useful information and support if you are caring for someone with a mental illness.

Information and support on caring

• Get in touch, Carers UK – Carers UK have a helpline and email advice service where they can offer information and guidance to unpaid carers. Carers UK also run a Forum, where you can access an online community of carers.
• Looking after someone, information and support for carers, Carers UK – Here you can find Carers UK’s guide on looking after someone. There are versions of this guide available for carers living in England, Wales, Scotland and Northern Ireland.
• When caring ends, Carers Trust – Information on managing the changes to your life when your caring role comes to an end.

Information on caring for someone with a mental illness

• Caring for someone with a mental health problem, Mind – Information from the mental health charity Mind on caring for someone with a mental health problem.
• How to help someone seek mental health support, Mind – Information on how to offer someone with a mental health problem emotional and practical support, what to do in an emergency and how to look after yourself.

Information on rights

• Carers' social care rights, Mind – Information on the rights of carers.
• Confidentiality, information – for loved ones of people living with mental illness, Rethink Mental Illness – Information about when healthcare professionals can share information with carers and when they can’t.
• SHARE: consent, confidentiality and information sharing in mental healthcare and suicide prevention, Gov.uk – A report from the Department of Health and Social Care on consent, confidentiality and information sharing in mental healthcare and suicide prevention.
• Consent to mental health treatment, Mind – Information about giving consent, when you might be treated without your consent and refusing treatment.
• Mental capacity and mental illness, Rethink Mental Illness – Information about mental capacity and your rights according to the Mental Capacity Act 2005.
• Planning to consent to mental health treatment, Mind – Information on planning ahead if you might lose capacity in the future.
• Planning for your care - Advance statements and advance decisions, Rethink Mental Illness – Information on making advance statements and advance decisions which can be used to make decisions about your care if you lose capacity.

Information on financial support and benefits

• Citizens Advice – Citizens Advice offers information to people across the UK on helping with the cost of living, bills, energy and more.
• National Energy Action (NEA) – Get advice on keeping your home warm and safe, paying energy bills, support available for cost of living and more

Information for professionals.

• Good Psychiatric Practice- Confidentiality and Information Sharing (2nd edition) (CR209 Nov 2017) - Royal College of Psychiatrists report on confidentiality and information sharing.
• The NICE (National Institute for Health and Care Excellence) Quick Guide to Support for Adult Carers (PDF) - This information is for social care practitioners about supporting people who provide unpaid care to adults with health or social care needs.

This information was produced by the Royal College of Psychiatrists’ Public Engagement Editorial Board (PEEB). It reflects the best available evidence at the time of writing.

Special thanks to Carers UK, who shared their valuable feedback on this resource, and to the carers who agreed for their words to be included.

Supported by: 

Full references available on request.