Involving you in your care

The NHS Constitution states that 'You have the right to be involved in discussions and decisions about your healthcare, and to be given information to enable you to do this.' The NICE guidance goes into more detail about this, as described below.

Talking with healthcare professionals

When you talk with a healthcare professional, they should make sure that the surroundings are suitable and that your privacy is respected, particularly if discussing sensitive, personal issues. They should ask you what you would prefer to be called, and use this name when talking to you. They should also do what they can to make you feel at ease – for example, sitting at the same level as you when talking to you. If you have had an examination and/or you are in hospital, healthcare professionals should give you enough time to get dressed or cover up before talking with you.

You should be asked whether you would like to be accompanied at consultations by a family member or friend, and whether you want to take notes and/or an audio recording to refer to afterwards. You should have access to a patient advocate (someone who helps you put your views across) if needed.

Healthcare professionals and other staff should bear in mind that accents and dialects (both yours and theirs) can affect understanding, and talk with you about this if it could be a problem. You should also feel able to raise this yourself.

If you have difficulties in speaking or understanding English, an interpreter should be provided to help you.

Your healthcare professional should talk with you about your condition and care, and about any concerns you might have. They should explain things clearly to you, including giving the meaning of any unfamiliar words. They may ask you questions to encourage discussion.

At the end of the discussion, the healthcare professional should check that you understand what has been said, and summarise the most important information.

Information and shared decision making

Healthcare professionals should give you all the information you need so that you can be fully involved in decisions about your care and the management of your condition.

Involving family members and carers

When you first visit a healthcare professional, they should check whether you want your partner, family members and/or carers to be involved in decisions about your care. If you agree, information should be shared with them. If for any reason you are unable to say whether you agree (for example, if you are unconscious), family members and carers should be kept involved and informed, but healthcare professionals should still respect your confidentiality.

Type and style of information

Information should be provided at the outset and throughout your care. All information you receive should take account of your preferences, and should be clear, consistent and based on the best available evidence. It should include details about your condition, treatment options, where you will be seen, who will be involved in your care, and the expected waiting times for any appointments, tests and treatments. You should be kept fully informed about the likely duration of any delays.

You should be given both oral and written information, and should have the option of getting information in different formats (such as large print, Braille, different languages, pictures and symbols), if this will help your understanding. This includes information about appointments.

You should be offered copies of letters about your care between healthcare professionals (for example, from a hospital doctor to your GP). These should be legible and, if possible, written using everyday language that you understand. Healthcare professionals should answer any questions you have about these letters.

Making decisions about tests and treatment

The information you are given will help you to be fully involved in and to make decisions about your treatment and care, with the support of your healthcare professionals.

When a healthcare professional offers you any test or treatment, they should explain clearly why it is being offered and the options available. You should be told about all treatment options, even if these are not available in your local area.

Your healthcare professional should ask you about your personal needs and preferences, and what you hope the test or treatment will achieve. They should provide information about the risks, benefits and consequences of the test or treatment, and make sure that you understand this information. If you want to, you should also be able to discuss the likely outcomes of any proposed treatments and your prospects for recovery.

You should have plenty of time to discuss possible tests and treatments, and be able to ask as many questions as you want. If there isn't enough time for this you should be offered another consultation.

In cases where you have a choice of treatments or tests and there is no clear 'best' treatment, your healthcare professional may offer you one or more 'tools' to help you make an informed choice. This might be a website or DVD that takes you through the various options, including information on expected benefits, risks and likely outcomes. In some cases you may be offered counselling or similar support.

Healthcare professionals should respect and support you in your choice of treatments, including if you decide not to have a test or treatment, even if your views are different from theirs. You can ask for a second opinion and should be told how to go about getting this if needed.

You should be given as much time as you need to make decisions about tests or treatments, and to talk things through with family and carers if you want to. Healthcare professionals should talk with you about what is important to you, and check that any decision you make fits with this.

Questions you might like to ask about your care

  • Please tell me more about my condition and possible treatments.

  • Please give me more details about possible tests.

  • Why have you decided to offer me this particular treatment, and what will it involve?

  • What are the benefits, risks and likely outcomes of this treatment?

  • Are there any other treatment options?

  • What will happen if I choose not to have the treatment?

Giving your consent to treatment and care

All treatment and care should be given with your informed consent. If you are not able to make decisions about your care, healthcare professionals have a duty to talk to your family or carers unless you have specifically asked them not to. Healthcare professionals in England should follow the Department of Health's advice on consent (see www.dh.gov.uk/en/DH_103643) and the code of practice for the Mental Capacity Act. Information about the Act and consent issues is available from www.nhs.uk/CarersDirect/moneyandlegal/legal. In Wales healthcare professionals should follow advice on consent from the Welsh Government (www.wales.nhs.uk/consent).

If you have made an 'advance decision' (known as a 'living will' in the past) in which you have already given instructions about any treatments that you do not wish to have, your healthcare professionals have a legal obligation to take this into account.

Information about looking after yourself

You (and your family and carers if appropriate) should be given any information you need to look after yourself. This includes information about taking medicines correctly and using any equipment you might need.

Additional information and support

Your healthcare professionals should tell you about where you can find additional reliable high-quality information and support, such as from national and local support groups, networks and information services (including websites). You should also be told about other healthcare services and social services (for example, services to help quit smoking) that are available, and encouraged and supported to use any that might be helpful for you.

Patient education programmes

If you have a long-term condition (for example, diabetes or kidney disease), you may be offered the chance to take part in an education programme, if this would be suitable for you. This usually involves going to group sessions, run by specially trained people, at which you learn more about your condition and ways of coping with it. An education programme might also be offered as part of a rehabilitation programme (for example, cardiac rehabilitation) to help your recovery.

  • Information Standard