Planning for the future - 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 or willing to care for them. In this section 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.

***** New emergency coronavirus legislation has been introduced. It means that there are some temporary changes to some of the information included below. You can read about the changes by clicking here. *****

Overview

  • You may not always be able to care for your relative. For example, you may move to a new area, become too unwell, fall out with your relative or pass away. You may find it helpful to plan for the future now.
  • You can plan your relative’s future care by:
    • talking to your relative about the support that they need,
    • asking friends or family if they can help,
    • talking to mental health services,
    • talking to social services, or
    • thinking about supported housing or a care home if your relative needs a lot of support.
  • You can ask for a carer’s assessment from your local authority if you need support to be able to care for your relative.

My caring role

What is my caring role?

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

  • emotional support,
  • help with shopping,
  • help with paying bills,
  • help getting out and about,
  • help with going to appointments,
  • reminding them to take medication,
  • offering somewhere to live, or
  • dealing with money problems.

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 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 factsheet you can download by clicking the link above.

Discussing plans

How do I discuss future care with my relative?

Discussing the future can be a difficult conversation to have. Your relative may not want to talk about it for different reasons. They may find it upsetting or overwhelming. They may also find it difficult to cope with change.

How do I start a conversation with my relative?

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

It may help to plan what you want to say to your relative before you talk to them. This may help you to feel more in control of the conversation. Think about what you want to say and what you want to achieve from 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 you don’t give?
  • Do you think that your relative’s needs will change in the future?
  • What do you think that your relative’s needs will change to?
  • Why do you think that their needs will change in future?
  • Why is the support stopping?
  • When will you stop supporting them?
  • Is this change short term or long term?
  • Who is likely to support them instead of you?
  • How are they likely to feel about this?
  • How do they prefer to be given information?
  • Are they likely to respond better to a gentle conversation or a more direct conversation?
  • What can you do to support them if they become distressed during the conversation?
  • Do you need support from someone else to have this conversation with your relative?

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?
  • Is anyone else needed to support the conversation available?

What should I do during the conversation?

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

  • Explain the reason for the conversation
  • Be positive about the change
  • Be calm
  • Be patient
  • Be empathetic
  • Be reassuring
  • Be respectful of their thoughts and feelings
  • 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.
  • Stay on topic
  • Have coping techniques for dealing with your own emotions
  • Have breaks
  • Avoid making promises. Some things will be out of your control.

It’s unlikely to be helpful to do the following.

  • Rush through the conversation
  • Change the topic
  • Tell them unhelpful phrases such as, ‘you are being silly.’
  • Not acknowledging their concerns

What should I do after the conversation?

You may have found the conversation difficult to deal with. Try to set aside some time for yourself to reflect on the conversation and unwind. You may do this by talking to friends, exercising or reading a book.

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. For advice you can contact a charity for support such as Rethink Mental Illness Advice Service. Our contact details can be found at the bottom of this page.

Make sure that you follow up on any agreements that you made during your conversation. If you aren’t able to follow up on certain 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?

What if my relative lacks mental capacity?

Your relative may lack the mental capacity to have a conversation about their care. This means that they are too unwell to make decisions about their care. For example, your relative may ‘lack insight’. This means they don’t realise they are unwell. This can make it difficult to discuss care issues. It can also be difficult if your relative does not recognise the support that you give them.

If your relative is thought to lack mental capacity to make decisions about their care needs, they may be able to get support from an advocate to help them to make decisions about their care. The advocates that may be able to help are:

  • Independent advocate, also known as a Care Act advocate, or
  • Independent mental capacity advocate,

A ‘best interests’ decision will be made for your relative if they lack mental capacity to make the decision. This means that care decisions will be made on their behalf.

You should be involved with the best interest decision if:

  • you are interested in your relative’s welfare,
  • you are involved with your relative’s care,
  • you have a Lasting Power of Attorney (LPA) for Welfare for your relative, or
  • you have a deputy order from the Court of Protection.

You can find more information about:

  • Mental capacity and mental illness by clicking here.
  • Advocacy by clicking here.
  • Money matters - Dealing with someone else’s money or benefits by clicking here.

Friends & family

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 won’t help?

It is up to friends and family members how much support and care they feel able, or willing to offer your relative. Some may have other commitments such as work, study or their own family. They may also live far away, which may limit the amount of support they can give.

If friends and family are unwilling to help you may find this frustrating, and stressful. To deal with your emotions you may find it helpful to:

  • Talk to trusted friends and family about how you are feeling
  • Talk to your GP
  • Talk to a counsellor
  • Talk to an emotional support line
  • Join a carers support group
  • Make time for yourself

What if relationships with family or friends breakdown?

Talking about someone’s care needs with other people can lead to arguments and misunderstandings. You may disagree about things such as the following.

  • Who will be in charge of a certain task?
  • Time commitments
  • What care your relative needs?
  • Quality of care

Disagreements can lead to bad feelings which can change your relationship with someone. Family breakdowns can have a negative effect on your relative’s recovery. They can also have a negative effect on you and your family member or friend.

If you notice a change in your relationship with your family member or friend, it may be time to do something about it.

You could try the following.

  • Talk to your family member or friend about the changes that you have noticed. And how you would like them to change.
  • Talk to other family members for emotional support. You could ask for their opinion for how to deal with the breakdown.
  • Talk to other family members for practical support. You may want them to be involved to help sort issues.
  • Join a carers support group. You may come across other carers who have shared experiences.
  • Talk to a counsellor. This could be 1 to 1 counselling or family counselling. But no one will be forced to take part.

You could try to arrange counselling through:

  • your GP, or
  • an independent relationship counsellor, such as the charity Relate.

Their details can be found in the useful contact section further down on this page.

You could also speak to your GP or your relative’s care team about family intervention. Family intervention is where you, your relative and your family member or friend work with mental health professionals to help to manage relationships.

Family intervention should be available for people who care for someone who has psychosis.

The following websites might help you to find a counsellor:

You can find more information about:

  • Stress – how to cope by clicking here.
  • Talking Therapies by clicking here.

Help from services

How can mental health services help?

Mental health services are part of the NHS. They offer care and treatment to people living with a mental illness. They can help by:

  • prescribing medication,
  • arranging and providing different kinds of talking therapies, and
  • making a care plan for your relative.

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 refused to work with mental health services, or
  • it has not been possible to get help from mental health services for some other reason.

How can my relative be referred to a mental health team?

Your relative can make an appointment with their GP and ask to be referred to the mental health team. In some areas people and family members are able to refer themselves to mental health teams.

If your relative has not had any help from mental health services, you may wish to discuss this option with them. Your relative can’t be forced to get help from a mental health team.

How about if my relative is already getting support from a mental health team?

You can contact the mental health team or your relative’s care coordinator for support. They may be able to offer practical guidance.

If your relative has a care plan, the mental health team should review it.

If your relative doesn’t have a care plan you can ask for them to be assessed under the Care Programme Approach (CPA).

CPA is a framework used to manage people with complex care needs. Under the CPA your relative will have a care coordinator and a care plan. Your relative’s mental health treatment and social care needs should be included in the care plan. The care coordinator will monitor the care plan.

You can also let the mental health teams know if you’re struggling with your caring role. You can ask them for a carers’ assessment if you are still willing and able to help with some of your relative’s care.

The mental health team should have given you information about your right to a carers assessment when your relative started to use the service.

How about if my relative is entitled to section 117 aftercare?

Certain people will be entitled to section 117 aftercare. Section 117 is free aftercare for people who have been under certain sections of the Mental Health Act, such as section 3.

‘After-care’ means help your relative will get after they leave hospital that:

  • meets needs that they have because of the mental health condition that caused them to be detained, and
  • reduces the chance of your relative’s condition getting worse, so they don’t have to go back into hospital.

If your relative is entitled to section 117 aftercare they should have a care plan in place.

You can find more information about:

  • Persuading someone to speak to their GP by clicking here.
  • Community mental health team by clicking here.
  • Care programme approach by clicking here.
  • Section 117 aftercare by clicking here.
  • Carers assessment by clicking here.

How can social services help?

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,
  • prepare meals or go shopping, and
  • manage money.

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

The Care Act 2014 gives local authorities the duty to assess people who are in need of care and support. This is called a needs assessment. The assessment must look at:

  • how your relative’s needs affect their wellbeing,
  • what your relative wants to do in their day to day life, and
  • if social care would help them do what they want to do.

Your relative will be given help if they have needs that qualify for support.

Your relative will have a financial assessment to work out if they will have to pay for some or all of their care. Some people will be entitled to free care from the local authority.

You can find more information about:

  • Social care assessment under the Care Act 2014 by clicking here.
  • Social care - care and support planning by clicking here.

How do I arrange housing for my relative?

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

  • independent living,
  • supported accommodation, and
  • living with family.

Independent living options are:

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

Supported accommodation options are:

  • supported accommodation,
  • hostels,
  • sheltered housing,
  • residential care homes, and
  • shared lives schemes.

Supported accommodation can be arranged through the community mental health team or social services. Supported accommodation includes support in someone’s home.

You can find more information about:

  • Housing options by clicking here.
  • Supported housing by clicking here.

Supporting my relative

What support is available to help my relative make decisions?

Advocacy

If you can’t support your relative, an advocate may be able to help them. There are different types of advocates available. Some advocates are statutory, and some are non-statutory.

Statutory advocates have to exist in line with different laws. For example, if your relative needs support to help them to engage in care planning, they can have an ‘independent advocate.’ They are sometimes known as a ‘Care Act advocate.’ This advocate exists in line with the Care Act 2014.

Another type of statutory advocate is an independent mental capacity advocate (IMCA). IMCA’s help people who may lack mental capacity to make certain decisions about care and treatment. This advocate exists under the Mental Capacity Act 2005.

A non-statutory advocate is often called a community advocate. Unfortunately, they don’t exist in all areas of the country. And the support that they offer will be different in different areas. A community advocate can commonly help with things like:

  • Going to medical appointments or meetings with your relative,
  • Helping your relative to access treatment
  • Helping your relative to write a letter

Advance statements and advance decisions

Advanced statement
Your relative may be worried that they might lack the mental capacity to make decisions in the future. They can write down what they would like to happen. This is called an advance statement.

An advance statement can cover:

  • treatment preference for mental illness,
  • the location of their treatment. For example, at home or in a hospital,
  • how they like to do things. For example, if they prefer to shower instead of a bath, and
  • practical matters like who will pay bills or look after pets.

But it is important to be aware that an advance statement is not legally binding. This means that it doesn’t have to be followed. However, people who make best interest decisions for your relative should think about what they have written in their advanced statement.

Advance decision
An advance decision is legally binding. Your relative can make an advance decision now to refuse specific treatment in the future.

Your relative must have mental capacity when making an advance decision. If your relative has a valid advance decision, a best interest decision can’t be made for them.

An advance statement and advance decision could give you and your relative reassurance about the future.

Lasting Power of Attorney

A Lasting Power of Attorney (LPA) is a legal document. An attorney can make decisions on behalf of your relative if they are no longer able to.

Your relative must have mental capacity to make an LPA.

Your relative can sign an LPA for:

  • health and welfare, and
  • finance and property.

An attorney can help your relative make decisions about:

  • their daily routine. For example, washing, dressing and eating,
  • their medical care,
  • where they live, and
  • managing money

The attorney could be you, other family members or friends.

You can help your relative to understand and complete an LPA.

Having an LPA in place may reassure both you and your relative. You will both know that someone that your relative trusts can make decisions for them if they lack mental capacity themselves.

What happens if my relative loses mental capacity and they didn’t put an LPA in place?
Best interest decisions will be made by health professionals. Professionals should consult family and friends. And include your relative’s preferences.

You can also apply to the Court of Protection to be your relative’s deputy. This will allow you to make best interests decisions for them. There are 2 types of deputyship:

  • personal welfare deputy, and
  • property and financial affairs deputy.

Wills and trusts

A will lets you decide who will get your money and possessions when you die.

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

You can also encourage your relative to write a will for themselves. This will allow them to make decisions about what will happen to their money and possessions.

What is a trust?
The money or possessions you give to your relative could be managed through a discretionary trust. A discretionary trust means that your relative does not get their inheritance paid directly to them when you die. This will mean that any income related benefits that they receive will not be affected. Instead, the money will pass to other people, called ‘trustees’.

You can choose who you would like to be a trustee, such as a family member. Choose someone who you think will have your relative’s best interests in mind.

The trustees will decide whether to give your relative money from the trust. For example, your relative may ask the trust for £1,000 for a pair of glasses. The trust may agree that your relative needs glasses, but that they can be purchased at a much lower cost. In this example the trust may only grant your relative £200 for glasses. This will help to protect your relative’s money.

You might give the trust instructions explaining when your relative should be given money. But the trustees can decide not to follow your wishes.

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

Rethink Mental Illness has set up the Rethink Trust Corporation (RTC).

RTC can set up a trust fund for your relative which can ensure their future needs are looked after.

Contact the Rethink Trust Corporation for information about setting up a trust with them.

Rethink Trust Corporation

Telephone: 0300 222 5702
Website: www.rethink.org/aboutus/what-we-do/rethink-trust-corporation/

You can find more information about:

  • Advocacy by clicking here.
  • Planning for your care – advance statements and advance decisions by clicking here.
  • Money matters –dealing with someone else’s money or benefits by clicking here.
  • Wills and Trusts by clicking here.

Getting support

Can I get support for myself?

If you need support to care for your relative, you could try the following:

  • talk to friends and family,
  • talk to your doctor,
  • ask for a carer’s assessment from your local authority,
  • join a carers service. They are free and available in most areas, or
  • join a support group for carers, friends and family.

What is a carers’ assessment?
You may be able to get support if you are caring for someone with a mental illness. You can ask the local authority to assess your needs by asking for a carer’s assessment. The local authority can give you support if you have eligible needs.

The local authority must assess you if they think they you need help with your caring role. It is free to have an assessment.

You can find more information about:

  • Supporting Someone with a Mental Illness by clicking here.
  • Carers assessment – under the Care Act 2014 by clicking here.
  • Respite care - breaks for carers by clicking here.

Further reading

Planning for the future and emergency planning. A guide for families, carers and friends of mental health service users – by Birmingham and Solihull Mental Health NHS Foundation Trust. This document offers practical advice and guidance on planning for future care.

Website: www.meridenfamilyprogramme.com/download/bsmhsPlanning-for-the-future-and-emergency-planning-smallfile.pdf

Useful contacts

Relate

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

Phone: 0300 100 1234
Website: www.relate.org.uk

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