Section 4:

Health Decisions - Planning for the Future - Making a Complaint

Contents

I’m being offered a test or treatment for my illness. Who decides if I have it?
Can I refuse or stop treatment?
What happens if someone is not able to make decisions about their health or care anymore?
What is Advance Care Planning?
How do I make Advance Care Plans?
What happens with my Advance Care Plans?
I want to prepare for the future
I want to make a Will
I want to plan my own funeral
What is Lasting Power of Attorney (LPA) and how do I get one?
I have Lasting Power of Attorney (LPA) for someone. What do I do?
I have Lasting Power of Attorney for health and welfare but staff aren’t listening to me. What should I do?
What do I do if I’m unhappy about my care?

  • Decisions about managing your illness would normally be a discussion between you and a health professional. You have the right to choose what tests and treatments you have, but you need to be given enough information to make a decision.

    When you are ill, the professionals looking after you need to explain the options for tests and treatments in a way you can understand. They also need to explain what they think would happen if you don’t want the tests or treatments they are offering. They should listen to what you want, so that you can make a decision together, that feels right for you. This animation explains this.

    If you think staff are not listening to you, or things are happening that you aren’t happy with, go the section below, ‘What to do if I’m unhappy with my care’.

  • Yes. But to do this you need to be able to make your own decisions. As long as you can do this, it is your choice to have a treatment from a health professional. You also have the right to stop treatment you are already on.

    It’s important that you feel able to say ‘no’ to treatment you don’t want. But make sure you have all the information you need first. Don’t be afraid to ask questions.

    If a person can’t make decisions for themselves, someone else can talk with the healthcare team for them. This would usually be their family or other representatives. The representatives can share what they think a person would want. That might be starting a treatment or stopping one. This kind of conversation is called a ‘best interests discussion’. It is guided by the Mental Capacity Act. You can read more about the Mental Capacity Act below.

What happens if someone is not able to make decisions about their health or care anymore?

If a person can’t make decisions about their health or care, decisions will need to be made for them. This happens when a person can’t understand information or explain what they want. This section will tell you how decisions are made in this situation and where you can find more information about dementia.

  • The Mental Capacity Act gives the legal steps that must be taken to help someone in this situation. It is there to protect people who cannot make certain decisions for themselves.

    If you or I cannot make certain decisions anymore, this Act lets someone else make those decisions for us. It tells them how to do this so that they represent our best interests. But it can only be done when we are not able to choose ourselves.

    This video explains what mental capacity is.

    This video explains what happens when someone can’t make decisions for themselves.

    The NHS has made a useful guide for the Mental Capacity Act. It explains the rules involved and how it works in practice.

    We can all take steps to make sure others know what we’d want if we couldn’t speak for ourselves. This is called advance care planning. There is more about this directly below.

  • People can lose mental capacity to make their own decisions for lots of reasons. Sometimes this happens for a short time only. Sometimes it gets worse and worse - like with dementia. There’s a whole range of information about living with dementia and helping people who have dementia at Alzheimer’s Society here and Dementia UK here. Both charities also have a telephone helpline if you’d like to speak to someone.
    You can find guidance on making decisions for someone with dementia who is no longer able to decide for themselves here.

  • If you can’t make health or care decisions for yourself, they will need to be made for you. But you can still make your wishes known by making plans in advance. This is advance care planning.

    You make plans when you are well enough to do so. The plans only come into action when you are not able to make decisions for yourself. These plans help people make the health and care decisions you would want.

    You can make some plans for yourself. Others are made with healthcare staff and help everyone know what to do in an emergency.

    There’s more information on the types of plans in our ‘How do I make advance care plans’ section directly below.

  • There’s helpful information about how to make advance care plans on the Marie Curie website or you can watch this short video.

    Thinking and talking about the future, and what’s important to you, is a good place to start. But it’s clearer for people if you write things down. Some plans have to be written down on specific forms. 

    If forms are difficult for you, take a look at the ‘I find it difficult to fill in forms’ section on our ‘Where to Find Help. Getting Started’ page.

There’s helpful information about how to make advance care plans on the Marie Curie website or you can watch this short video.

Thinking and talking about the future, and what’s important to you, is a good place to start. But it’s clearer for people if you write things down. Some plans have to be written down on specific forms.

If forms are difficult for you, take a look at ‘Section 1, I find it hard to fill in forms’.

Plans you can make are:

  • This includes anything that is important to you and your quality of life. This might range from religious beliefs, whether you prefer to be cared for at home, or foods you don’t like. This helps people know what you would want but is not legally binding. You can find more information and a template for writing things down on the Compassion in Dying website here.

  • Some people have specific medical treatments they don’t want. In this case, you can make a written decision ahead of time. This is called an Advance Decision to Refuse Treatment (ADRT). If it’s been written correctly, it is legally binding. Marie Curie has more information on their website.

    You can also choose not to have cardiopulmonary resuscitation (CPR) if your heart stops beating or you stop breathing. Speak to your GP if this is your wish.

  • We call this Lasting Power of Attorney for Health and Welfare. We have a section with more info about this below, ‘What is a Lasting Power of Attorney and how do I get one?’

Health and care professionals may want to make other plans with you. That way everyone knows what to do in an emergency. These are not legally binding but are helpful in a crisis.

Different areas use different plans for emergencies. Some places use the ReSPECT form, others use Emergency Healthcare Plans and Do Not Attempt CPR forms.

  • This helps guide healthcare staff and the people with you, what to do and what not to do if you are seriously unwell.

  • Cardiopulmonary resuscitation (CPR) is a treatment when a person’s heart stops beating, or they stop breathing. It’s an aggressive treatment which is only suitable for some people. When it is not suitable, health professionals will make a decision not to give CPR. They need to tell the person, or their main carers, if they make this decision. You can also make your own decision if you don’t want CPR. Talk to your GP if this is the case. This short animation explains more. You could also look at TalkCPR. This gives clear information to help people understand CPR and DNACPR.

  • This form is used in many parts of the UK instead of Emergency Healthcare Plans and DNACPR forms. It tells professionals what to do in an emergency. The Resuscitation Council UK have made a guide to ReSPECT forms.

    You can ask your doctor or nurse to discuss plans for emergencies if that’s not been offered.

What happens with my Advance Care Plans?

Your plans are only used if you are too unwell to make a decision. So it’s important you keep them safe, and let people know where to find them.

  • This will help staff to care for you in the way you would like. It is not a legally binding document. That means that there may be times when they cannot offer you something, even if you have asked for it. They will only do this if they think that what you asked for won’t help you, could hurt you, or is not possible.  

  • This allows your chosen person to take your place in discussions with health and care staff. They can guide decisions according to what you would want. Lasting Power of Attorney has legal standing, so staff must respect this. See more about how LPA works in the section below.

  • This names treatments you don’t want to have in certain situations. This is legally binding, but it must be written correctly.

  • Your healthcare team may have written plans to guide other health staff in an emergency. This could be a ReSPECT form, a DNACPR form, or an Emergency Healthcare Plan. Some places share these digitally. If not, you will be given paper forms and asked to keep these in a safe place. Do tell people where they are, so they can find them easily.

  • You may want to change your plans and that’s fine. Lots of people do. 

    Just make sure you check them from time to time. If your choices change, make sure you let your healthcare team know.

  • Preparing for the future is a very good idea. It gives you the chance to say what you want to happen in advance. This section will help you do that.

    You can plan ahead for personal matters. This includes things like:

    You can also plan ahead for your health care. This is in case you are ever unable to say what you want for yourself. This is covered in the sections above.

    You might also like to look at this: Marie Curie Planning Checklist.

I want to make a will

  • It is a legal document. It lets everyone know what you want to happen to your belongings when you die. It will say whether you want them to go to a person, a group, or a charity.

    A will can also say things about the people you are legally responsible for, your accounts, and financial interests.

    You can find out more about wills, and watch a short video by Age UK here.

  • There’s good information about writing a will at Money Saving Expert Cheap and Free Wills.

    Regulatory Bodies

    When writing a will, most people need a solicitor or other will writing service. Usually, these help people but they can be a problem too. Anyone can legally offer a will writing service and some are very bad services. Because of this, it can be hard to know who to trust.

    Regulatory bodies are organisations that check services follow certain rules. They are optional and not all services take part. Make sure your service does.

    • Solicitors - Solicitors Regulation Authority.

    • Will writing company - The Society of Will Writers is well known but there are others too.

  • If you feel up to it, it can be a positive choice that helps the people around you.

    You can find advice on the Marie Curie website.

What is Lasting Power of Attorney (LPA) and how do I get one?

  • It is a way you can choose someone to make decisions for you in the future. There are 2 types of Lasting Power of Attorney:

    Health and Welfare

    This gives someone the right to make decisions about the kind of care you get. They will only be able to do this if you are not able to make those decisions yourself. 

    Property and Finance

    This gives someone the right to make decisions about your money and your property. They can do this if you are not able to make those decisions yourself, or if you allow them to help you at an earlier stage.

    Which type someone has affects the decisions they can make for you. You must apply for each type separately and there is a fee for each. You do not have to use a solicitor to apply for Lasting Power of Attorney.

    You can find out more using this short video from Age UK. You can also see the Government website, where the application is made.

    There is a step by step guide to Lasting Power of Attorney on the MoneyHelper website.

  • Lasting Power of Attorney is only active once you have the approved document. It comes from the Office of the Public Guardian. It may take around 3 months from sending your application, so you will need to give plenty of time.

  • If you have difficulty filling in forms, see our ‘Section 1, I find it hard to fill in forms’.

    If you would like help, Safeguarding Futures will have a chat with you. It is classed as a consultation, but it is completely free. If you want them to keep helping you after your consultation it will cost money.

    You can find more from the Safeguarding Futures website.

  • You must apply for each type separately and there is a fee. It usually costs £82 each application, but some people pay less, or nothing. The reductions are based on whether you have a low income or get certain benefits.

    You can find out more about reductions and apply for them using this form.

    If you have difficulty filling in forms, see ‘I find it hard to fill in forms’ in Section 1.

    There will be extra costs if you have the help of a solicitor, or other expert, with your application.

I have lasting power of Attorney (LPA) for someone. What do I do?

  • If you have Lasting Power of Attorney (LPA), make time to talk with the person who is ill. You need to make sure you understand their wishes. It is much easier to help someone when you know what you should do.

  • There are 2 types of Lasting Power of Attorney (LPA). They are used differently.

    Property and Finance

    This gives you the right to make decisions about someone’s money and property.

    Health and Welfare

    This gives you the right to speak for the person who is ill when decisions are being made about their care.

  • If you are someone’s attorney for property and finance, you will get a letter. This letter will come from the Office of the Public Guardian. It has detailed steps for you to follow when you are ready to use the LPA. You can find out more using the Government website.

    As attorney, you need to contact the banks and utilities of the person who is ill. They will need to see the LPA documents to give you control over the accounts. Each organization has a slightly different process so it best to ask about this ahead of time. Some organizations let you use an online access key, so you don’t have to send them the full document.

    You can get an access key on the Government website.

  • You need to wait until you have the original LPA document before you can do anything. That’s because the health or social care staff need to see the document to talk to you as someone’s attorney. It will be particularly important to have this with you if the person is admitted into hospital or a care home.

    Once you have it, the first thing you can do is to visit the GP of the person who is ill. Let them know that you have LPA for their Health and Welfare. Ask for this to be noted on the person’s clinical records. Ask the GP to inform the local ambulance service too. It will be very helpful if anyone needs to make a 999 or 111 call in the future.

    When someone is poorly, it is normal for lots of different health care staff to be involved. Whenever you meet a new service, it is important you let them know you are the attorney. You will also need to do this when the person is admitted to hospital. Make sure you keep your documents somewhere you can find them for this.

  • An active LPA for Health and Welfare (approved by the Office of the Public Guardian) should be recognised by staff. If this is not the case, first check that:

    • The LPA is for Health and Welfare, not Property and Finance

    • The person who is ill is unable to make health or care decisions for themselves

    • The LPA has been approved by the Office of the Public Guardian. Health and care staff may ask to see the approval letter.

    If the above requirements are met, the appointed person (or people) can make most health and care decisions on behalf of the person that is ill. Staff refusing a valid LPA should be challenged – see ‘What do I do if I am unhappy with my care’ section below.

  • Sometimes people feel they are not being listened to, or staff are not following the plans someone has made. 

    It is important to let someone know if you’re unhappy, or worried, about care. You have the right to complain.

    The first thing to do is ask to talk with the professional team involved. It may be they can sort things straight away.

    If you’re not happy with their response, there are things you can do:

    There’s more information about making a complaint on the Healthwatch website.

  • You can get free help from an NHS Complaints Advocate. This can be really helpful if you’re finding it hard to say what you want to say, or if the idea of complaining feels scary.

    Take a look at this short video to find out more: NHS Complaints Advocacy by POhWER.

need more information?
choose the relevant section from the options below…

Section 1:
Finding Help - Support for Carers - Filling in Forms

Section 2:
Money - Pensions -
Work - Benefits

Section 3:
Home - Mobility -
Social Care - Insurance - After a Death