Planning for the future

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Planning for the future - Your relative's care and support

Your relative's care and support

This section gives information about how to plan future support for the person that you care for. There may be a time when you are no longer able to care for them. This information is for loved ones or carers of adults affected by mental illness in England. It’s also for anyone interested in this subject.

Download Planning for the future - Your relative's care and support factsheet

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Overview

You may be worried about your relative’s care and support needs when you can no longer care for them.
You can plan for your relative’s future care by:
- talking to them about the support that they need,
- asking friends or family if they can help,
- getting support from NHS mental health services,
- getting support from social services, or
- thinking about their housing needs.
Some people find it helpful to have legal documents in place. Like advance statements or advance decisions, Lasting Powers of Attorney and wills and trusts. It gives them peace of mind for the future.
You can ask for a carer’s assessment from your local authority if you need support as a carer.

Note

On this page we call the person you care for ‘your relative.’ But this information is still relevant for you, even if you are not related to the person you support.

Need more advice?

If you need more advice or information you can contact our Advice and Information Service.

What support do I give my relative?

You may be helping your relative in many ways. This might include:

emotional support,
help with shopping,
paying bills, money, and finances,
help getting out and about,
help with going to appointments,
reminding them to take medication,
accommodation, and
getting mental health support.

You may be worried about your relative’s care and support needs when you can no longer care for them. This is a common concern for people who support someone who lives with a mental illness.

A helpful first step may be to make a list of the support that you give to your relative. This may give you an idea of the support your relative is likely to need in the future.

There is a template plan for you to use in the downloadable version of this page. Click on the download button at the top of the page for more details.

How can I discuss future care with my relative?

It might help you to talk to your relative about planning their future care.

What can I do before I speak to my relative?

It may help to plan what you want to say before you talk to your relative. This can help you to feel more in control.

Think about what you want to say and what you want to get out of the conversation.

It may be helpful to think about the following questions:

What support do you give to your relative?
What support does your relative need?
What support does your relative find helpful?
Is there any support that your relative wants that they don’t get?
How do think your relative’s needs might change in the future?
How and when do you think your support of your relative might start to change?
Who can support them instead of you?
How are they likely to feel about any change?
How do you think they’ll react to this conversation?
How do they prefer to be given information?
Do you or your relative need support from someone else to have the conversation?

It might help you to speak a person you trust who knows your relative about what you are doing. They might have useful thoughts on how best to approach your relative.

What if my relative is being supported by an NHS mental health team or social services?
Your relative might be supported by an NHS mental health team or social services.

You could speak to professionals involved in your relative’s care from the mental health team or social services.

You can say that you want to plan your relative’s future care and you want to discuss it with them.

See further down this page for how NHS mental health teams and social services can help.

You might want to bring in professionals from your relative’s mental health team or social services into the conversation.

What other useful information is there?
You can read the following guide. Some of the services in there are for Birmingham and Solihull only. But the advice and information can apply to all carers.

Birmingham and Solihull Mental Health NHS Foundation Trust. Planning for the future and emergency planning - A guide for families, carers, and friends of mental health service users.

This document offers practical advice and guidance on planning for future care. www.meridenfamilyprogramme.com/download/bsmhsPlanning-for-the-future-and-emergency-planning-smallfile.pdf

How can I start to think about stepping back from caring?
Each carers caring relationship with their relative will be unique. But you might have had close involvement with the care of your relative for a long time.

You might think your relative can do more for themself, even if they need support. But you might be anxious about stepping back.

You can't think about stepping back slowly, so your relative can get used to doing more for themselves. And having more independence and trying to solve problems that arise. This is while you are still there to guide them and give them the confidence they need.

What should I do if my relative doesn’t want to talk or finds it difficult?

Discussing the future with your relative might difficult for a number of reasons.

They might, say:

not want to talk about it,
find it upsetting to think there might be a time when you can’t care for them, or
find it difficult to think about change.

You can think about what you can do to support them if they become distressed during the conversation.

It can help to plan by thinking about:

when to start the conversation,
how to start a conversation, and
what to do during the conversation.

When should I start the conversation?

It may be helpful to think about the following.

Are you in a suitable place to talk?
How much time do you need to have the conversation?
Are you likely to get disturbed during this time?
Is there anything you can do to avoid being disturbed?
Are you mentally able to cope with the conversation at this time?
Is your relative mentally able to cope with this information at this time?
Is there a deadline for when the conversation needs to happen by?
Are people needed to support the conversation available?

How do I start a conversation with my relative?

It might be helpful to explain to your relative that:

as you get older or less able it will be harder for you to care for them,
you’d like to plan now for their future care and support needs, and
you think it’s important they are involved I the planning process.

There is no right or wrong way to talk about future planning. The approach you take will be personal to you and your relative.

What should I do during the conversation?

It can be helpful to do the following during the conversation.

Be positive about the change
Be calm and patient
Listen. Repeat their words back to them in your own words. This shows that you are listening. Repeating information can also make sure that you have understood them properly.
Show empathy
Be reassuring
Be respectful of their thoughts and feelings
Stay on topic
Give your relative the time they need to take information in. Ask them if they have any questions or if they want you to explain anything again
Ask your relative who is part of their support network. You may find a wider social or community network than you were aware of. It will be helpful to note these down.
Have coping techniques for dealing with your own emotions
Have breaks
Avoid making promises you can’t keep. Some things will be out of your control.
Make notes of anything important and any actions you have agreed to do, individually or together.

What should I do after the conversation?

What you do after the conversation will be depend on things like:

the circumstances or you and your relative,
what you discussed in the conversation, and
things you agreed to do.

But the following are some things you might do.

Make notes of anything important and any actions you have agreed to do, individually or together.
Make a plan of action points. What will you do first, second, third. And by when?
Try to set aside some time for yourself to reflect on the conversation and unwind. Especially if you found the conversation difficult to deal with.
Things may have been raised during the discussion that you don’t know the answer to. Finding out answers to questions can be helpful and reassuring for both you and your relative.
Make sure that you follow up on any agreements that you made during your conversation. If you can’t follow up on agreements talk to your relative to explain why. And what the next steps are going to be.
Think about any practical support that your relative may need following the conversation. For example, do you need to write down the main points of the conversation for them? Is there anyone that you need to share the agreed information with?
Talk through the conversation, of some of the main points, with a trusted person. This could be for practical or emotional support, or both.
Get advice from us, Rethink Mental Illness Advice Service, by contacting us by:
- phone on 0808 801 0525. Monday to Friday 9.30am - 4pm, excluding bank holidays,
- email at advice@rethink.org We aim to respond within 3 working days,
- webchat at www.rethink.org Open from 10.00am – 1pm Monday to Friday, excluding bank holidays. Look out for the webchat icon in bottom, right-hand corner of the screen, or
- letter, by writing to at Rethink Mental Illness Advice Service, PO Box 18252 Solihull B91 9BA. We aim to post our reply within 3 working days of receipt of your letter.

What if my relative lacks mental capacity?

You have mental capacity if you can make decisions for yourself and communicate them.

Your relative might lack the mental capacity to make or communicate decisions about their care. Or they might not be able to fully understand or communicate decisions. If they do:

an advocate might be able to support them, and
best interest decisions can be made for them.

See our webpage on Mental capacity and mental illness – The Mental Capacity Act 2005 for more information.

How might an advocate be able to support my relative?
If your relative has mental capacity issues an advocate might be able to help them with things like:

understanding their rights,
understanding their options,
communicating other information,
helping them make a decision,
dealing with professionals, and
getting the services that they need.

Advocacy services are free of charge.

The following types of advocates might be able to help your relative when planning their future care:

Care Act advocate, or
Independent mental capacity advocate.

See our webpage on Advocacy for mental health for more information.

What is a best interests decision?

If your relative lacks the mental capacity a ‘best interests’ decision can made for them. This is when someone else decides what is best or your relative.

For any decisions about your relative’s current or future care, mental health and social care professionals should consult:

anyone named by your relative someone to be consulted about these things,
anyone involved in their care,
any attorney under a Lasting Power of Attorney (LPA) granted by your relative, or
any deputy appointed by the Court of Protection to act for your relative.

You can See our webpage on Mental capacity and mental illness – The Mental Capacity Act 2005 for more information.

How can friends and family and local services help?

How can friends and family help?

Friends or family members may agree to take over some of the support you offer. Such as giving your relative emotional support or taking them to medical appointments.

If other people agree to offer support, you could slowly increase their involvement whilst withdrawing the support you offer. This may help make things easier when you can no longer support your relative.

What if friends or family are reluctant to help?
Your friends or family might see how much time you spend caring for your relative. And they may have commitments such as work or their own family. This might make them reluctant to get involved in the care if you're relative.

But you could explain that even if they good play a small part in your relative’s care that would be a great help.

So, say, a family member who lives far away from your relative could still text them reminders to take their medication.

Talking about your relative’s future care needs with friends and family might have lead to disagreements and misunderstandings. If that happens you can get counselling, support, and information for all relationships from Relate.

Relate
Counselling, support, and information for all relationships. Relate offer message, webcam, and telephone counselling either to individuals or couples or families. You must pay to use their services.

Website: www.relate.org.uk
Find your local centre: www.relate.org.uk/find-your-online-centre

See our webpage on Stress – How to cope for more information.

How can I find local carers’ services?

Can I get information on carers’ services from my local authority?
You can contact your local authority for information on local services for carers. They are legally obliged, under the Care Act 2014, to provide this information service.

You can find your local authority’s website by putting your postcode into this website: www.gov.uk/find-local-council

Where else can I get information on carers’ services in my area?
You could also try the following for local services:

Rethink Mental Illness: Runs a number of carers’ support groups and services across England: www.rethink.org/help-in-your-area/services/carer-support
Carers UK: Directory of local support services for carers: www.carersuk.org/help-and-advice/support-where-you-live
Carers Trust: Search for carers’ services near you: www.carers.org/search/network-partners
Local libraries
Ask your relative’s NHS mental health team or social care team, if they have one, or
You can search the internet, using a search term like ‘carers services [area where you live]’

What are NHS recovery colleges?
Recovery colleges are part of the NHS. They offer free courses about mental health.

Recovery colleges are available in most areas. If you have a local recovery college, they might have courses:

for you as a carer, and
for your relative.

The courses are usually short term, and length can vary from 1 day up to 8 weeks.

You can usually self-refer to a recovery college.

Recovery colleges are designed to be person-centred. This means that if you attend a recovery college course you are involved in deciding what you learn.

To see if there is a one in your area you can:

search online at the following link: www.mindrecoverynet.org.uk/search
search on the internet using a search term like ‘NHS recovery college
‘[area where you live], or
call NHS 111.

How can NHS mental health services help?

NHS mental health services offer care and treatment to people living with mental health conditions.

They include teams like NHS:

Community mental health teams
Crisis teams
Early intervention teams
Assertive outreach team
Teams that deal with specific conditions like, say, personality disorders.

The length and type of support a team can provide to your relative can vary depending on the type of team and their needs. But the support can include things like:

prescribing medication,
arranging and providing different kinds of talking or other therapies,
support from professionals like community psychiatric nurses, support workers or occupational therapists, and
making a care plan for your relative.

Staff can include psychiatrists, social workers, mental health nurses, psychologists, occupational therapists, and support workers.

Your relative may not get help or support from mental health services for different reasons, such as:

you have always chosen to provide care and support as a family,
your relative has decided not to work with mental health services, or
it has not been possible to get help from mental health services for other reasons.

How can my relative be referred to an NHS mental health team?

Your relative can ask their GP about being referred to an NHS mental health team.

Some NHS mental health teams accept referrals from the person who needs help or family members.

If your relative has not had any help from NHS mental health services, you can discuss this option with them.

But your relative can decide if they want help from a mental health team. They can decide not to be supported by a team, even if that seems like an unwise choice.

What if my relative is already getting support from an NHS mental health team?

You and your relative can contact the person in charge of their care at their mental health team. This might be the person known as their care coordinator.

If you are less able to care for your relative, you can explain this. They may be able to offer practical guidance.

If your relative has a care plan, you can ask for it to be reviewed. The team should review it at least one a year. If you are stepping down your care, the plan might need to include increased care from the mental health team.

In terms of social care support there might be a need for:

new social care for your relative, if they currently don't receive any,
increased social care support for your relative,
new social care support for you as a carer,
increased social care support for you as a carer.

If your relative is with an NHS mental health team, social care support for both of you would normally be organised by the team.

You can read more about social care support below.

See our webpage on NHS Mental health teams for more information.

How can social services help?

Can my relative can social care support?

Your relative may be entitled to get help from social services. Social support can include support to help your relative to:

get out of the house,
keep in touch with friends and family,
get a job or take part in education,
clean your house,
prepare meals or go shopping,
keep safe,
manage your money,
take part in leisure activities, or
contribute to society, like volunteering, being in a club or group.

They may be supported in their own home, or they may be housed in somewhere like supported accommodation.

Under the Care Act 2014 your relative has a right to have their social care needs assessed. If they have what are known as eligible needs the local authority must meet those needs.

Your relative will have a financial assessment to work out if they have to pay for none, some or all their care. If they are entitled to section 117 aftercare, their social care will be free.

Can I get social care support?

You might need support from social services as a carer. You have the right under the Care Act 2014 to a carer’s assessment. You might be able to get support from social services.

How do we arrange needs and carer’s assessments?

If your relative is with an NHS mental health team, you can ask them about needs and carer’s assessments. Otherwise, you can contact your local social services department about them.

You can find your local authority here: www.gov.uk/find-local-council You should be able to find details of your local social services from the local authority’s website.

For more information see our webpages on the following:

What if my relative is entitled to section 117 aftercare?

Section 117 is free aftercare. It is for people who have been detained in hospital under sections 3, 37, 45A, 47, or 48 of the Mental Health Act 1983.

‘Aftercare’ means help your relative will get free care after they leave hospital that:

meets needs that they have because of their mental health condition or conditions, and
reduces the chance of your relative’s condition getting worse, so they don’t have to go back into hospital.

The NHS and social services must give your relative free aftercare for as long as they need it under section 117.

See our webpage on Section 117 aftercare – Under the Mental Health Act 1983 for more information.

How do I arrange housing and finances for my relative?

How do I arrange housing?

Different types of housing will meet different needs. The main housing options are:

independent living,
specialist accommodation for people who live with mental illness, and
living with family.

Independent living options are:

renting from a council, housing association or private landlord,
sharing a house with other people, or
home ownership.

Specialist accommodation for people who live with mental illness includes things like:

supported housing,
residential care homes, and
shared lives schemes.

Specialist accommodation is usually arranged through your relative’s NHS mental health team or social services.

For more information see our webpages on the following:

How do I arrange finances?

You can find information on the Mental Health and Money Advice website www.mentalhealthandmoneyadvice.org on:

‘Can someone else manage my money for me?’: It includes information on how you or another can help your relative with bank accounts and welfare benefits. Even if they are mentally incapable of making decisions about their finances.

What support and documentation can help my relative and me?

What is advocacy?

If you can’t support your relative, an advocate may be able to help them.

If your relative lacks mental capacity, see ‘What if my relative lacks mental capacity?’ at the top of this page.

What is general advocacy?
General advocates can help with different things. The help your relative can get depends on what service they offer. This can vary from service to service.

It could be things like, help with problems in the NHS or social services, housing, or benefits issues.

Your advocate may be able to help you write emails or letters or go to meetings with you.

General advocacy may not always be available in your relative’s area.

These services may also be called mental health advocacy or community advocacy.

What is NHS complaints advocacy?
Your relative can contact an NHS complaints advocacy service if they need help or advice about making a complaint about the NHS.

This service is available in every area in England.

How can I search for advocacy services?
To search for services, you can try the following search on the internet, using terms like ‘NHS complaints advocacy Leicestershire’ or ‘General advocacy Devon’. Search using your county, metropolitan borough, or London borough.

For more ways to search for services, see our webpage on Advocacy for mental health - Making your voice heard for more information.

See our webpage on Complaining about the NHS and social services for more information.

What are advance statements and advance decisions?

Advance statements and advance decisions are documents your relative can complete when they are mentally capable. They tell medical professionals their wishes if they become mentally incapable in the future.

What is an advanced statement?
In an advance statement your relative can say what they would like to happen with their future treatment and care. It is for medical professionals to consider if your relative becomes mentally incapable.

An advanced statement isn’t legally binding.

If your relative lacks mental capacity a ‘best interests’ decision should made for them. Medical professionals will consider your relative’s advance statement when they are making a best interests decision about their care and treatment.

What is an advance decision?
An advance decision is a document your relative can make now to refuse specific treatment in the future. This is if they become mentally incapable.

An advance decision is legally binding.

But medical professionals don’t legally have to follow an advance decision if you are in hospital under the Mental Health Act.

See our webpage on Planning for your care – Advance statements and advance decisions for more information.

What are Lasting Powers of Attorney?

A Lasting Power of Attorney (LPA) is a legal document. Your relative can sign an LPA to give one or more people authority over their affairs.

There are 2 types of LPA:

health and care decisions, and
financial decisions.

Your relative must have mental capacity to make an LPA.

A person appointed by your relative to act for them under the LPA is known as their attorney.

If your relative lacks mental capacity, an attorney can make decisions on their behalf.

Your relative should choose a trusted person or people to be their attorney or attorneys.

It is recommended that your relative thinks about getting legal advice before they sign a Lasting Power of Attorney (LPA). It can give wide-ranging powers to the attorneys.

Having an LPA in place may reassure both you and your relative. Someone that your relative trusts can make decisions for them if they lack mental capacity in the future.

What happens if my relative loses mental capacity and they didn’t put an LPA in place?
For care and treatment, normally health professionals will make best interest decisions. For more information see ‘What is a best interests decision?’ at the top of this page.

The Court of Protection might need to get involved if:

a more complicated care and treatment decision needs to be made, or
if you want to legally challenge a best interest decision made by health professionals.

You can contact the administration office of the Court called the Office of the Public Guardian. The details are in the Useful contacts section at the bottom of this page.

You can find information on the Mental Health and Money Advice website www.mentalhealthandmoneyadvice.org on:

‘Can someone else manage my money for me?’: It includes information on how you or another can help your relative with bank accounts and welfare benefits. Even if they are mentally incapable of making decisions about their finances.

See our webpage on Legal advice – Getting help from a solicitor for more information.

How can I get financial advice?

If you're not sure what to do with your money for the future, it’s a good idea to get professional financial advice.

Citizens Advice provide information about getting professional financial advice here: www.citizensadvice.org.uk/debt-and-money/getting-financial-advice

You should check to see if a financial adviser is on the Financial Services Register. You can access it here: www.register.fca.org.uk/s

You can make a will or trust if you want to leave money or possessions to your relative.

Can I set up a trust fund for my relative with Rethink?

What is a discretionary trust?

You might want to plan financially for your relative’s future. One option is to set up a discretionary trust as part of your will.

A discretionary trust means that your relative does not get their inheritance paid directly to them when you die. You appoint trustees, who manage the money for your relative. You can choose who you would like to be a trustee, such as a family member.

Putting money into a discretionary trust should mean your relative’s income related benefits won’t not be affected when you die.

Can I set up a discretionary trust with Rethink for my relative?

You might worry when you die, that your relative might have issues dealing with finances.

Rethink Trust Corporation (RTC) understands the needs of people with mental illness. They can give your relative a secure financial future and peace of mind for you.

Their simple, reliable service lets you set up a trust fund for your loved one. It can make sure their future needs are looked after.

This scheme is run by Rethink Mental Illness. So, unlike other providers, they understand the needs of people with lived experience of mental illness. They understand the circumstances and needs of people who are affected by severe mental illness.

RTC’s trust funds can provide real peace of mind. Your relative won't need to be burdened with managing money on their own. The trustees of the trust help them with it. If they are vulnerable, it helps protect them from unwanted pressures from outsiders.

If you have any questions or would like more information about setting up a trust fund with RTC you can contact them on:

Phone: 01458 258841
Email: trusts@rethinktrustcorporation.com

You can download their information booklet here:
www.rethink.org/media/6278/rtc-a-guide-to-rethink-trusts.pdf

You can view their webpage here:
www.rethink.org/advice-and-information/carers-hub/rethink-trust-corporation

Where else can I get information?

You can find information on the Mental Health and Money Advice website www.mentalhealthandmoneyadvice.org on ‘How do I make a will or trust fund?’

Can I get support for myself?

You can do the following.

talk to friends and family,
join a carers’ service or support group, and
speak to your GP if your mental health is affecting your day-to-day life.

How can I join a carers’ service or support group?
You can get peer support through carer support services or carers’ groups. You can search for carer support groups on the following websites:

Rethink Mental Illness: www.rethink.org
Carers UK: www.carersuk.org, and
Carers Trust: www.carers.org/search/network-partners.

What support can my GP give me?
Caring for someone with a mental health problem can be challenging. If it is affecting your mental health to the extent that it is affecting your day-to-day life, you can see your GP.

They can offer you advice and treatment.

For more information see our webpages on the following:

You can find information on the Mental Health and Money Advice website www.mentalhealthandmoneyadvice.org on ‘What benefits are available for mental health carers?’

How can I plan for my relative’s care in the future?

You can use the plan template we have created in the downloadable version of this information, using the link at the top of this page. Scroll down to Section 9 of the PDF factsheet.

We’ve filled in a copy to give you some ideas. There is a blank plan on the next page for you to use.

Useful contacts

Website: www.relate.org.uk
Find your local centre: www.relate.org.uk/find-your-online-centre

Office of Public Guardian
The Office of the Public Guardian (OPG) supervises the affairs of people who lack mental capacity for making decisions in England and Wales.

Phone: 0300 456 0300
Address: PO Box 16185 Birmingham B2 2WH PO Box 16185
Email: customerservices@publicguardian.gov.uk
Website: www.gov.uk/government/organisations/office-of-the-public-guardian

Last updated July 2023
Next update July 2026

Version number 5

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