Contents

  1. Shared decision making explained
  2. Common questions
  3. How to make it happen
  4. Four questions to ask
  5. Your rights

Shared decision making explained

You have the right to be involved in making choices about your medical treatment, the medicines you take and any operations you have.

Shared decision making is when medical staff and patients work together to make these choices.

You need to know what your options are. This should include what might happen if you choose a certain treatment but also if you refuse it.

Your doctor should explain what might work for you. Some options might not be suitable.

This leaflet explains your rights, answers some common questions and explains how to become more involved in your care.

What does shared decision making mean for me?

Shared decision making takes into account what matters to you.

  • Different choices will be discussed
  • They will be explored in full, including the risks and benefits
  • Your needs and preferences will be taken into account
  • You will reach a joint decision with health and care professionals about what is best.

Why does it matter?

Shared decision making allows those receiving and delivering care to understand what is important to the patient.

Studies have shown when people are involved in decisions:

  • They have fewer regrets
  • They report better relationships with health and care professionals
  • Decisions are made more effectively
  • Their health outcomes improve.

Common questions

Do I have the right to shared decision making?

Yes. You have a legal right to be involved in decisions about your care or treatment.

How does it work?

Your health or care professional should take the time to explain your options.

They should listen to your views and concerns.

There are some tips on the next page to help you explain what is important to you.

What should I tell them?

Your health or care professional needs to know what matters to you. No two people are the same.

Think about your priorities. For instance, is it the fastest-acting treatment or having the least potential side effects?

Do I get a say in what treatment I have?

Yes. This could be as simple as whether to take pills or have an injection.

It can also cover more complex issues. For example, choosing between chemotherapy, more conservative treatments, or surgery.

Who gets the final say?

You do. Your health or care professional will give you advice. But they cannot put pressure on you and the final decision on whether to go ahead or not is yours.  Your healthcare professional is not obliged to carry out a treatment that they consider inappropriate, unnecessary or futile.  You can ask for the evidence behind your healthcare professional’s decision.

Can I change my mind?

Yes. If you realise a treatment or care option is not right for you then let your health or care professional know as soon as possible.

How to make it happen

Being prepared can help you make the most out of shared decision making.

Your health or care professional should make sure you understand the information you are given.

However, the checklists below, based on NICE guidelines, will help make sure you know all your options.

Before you see your health or care professional

  • Write down any questions you want to ask
  • Think about what you want to achieve
  • Think about what matters most to you
  • Ask for an interpreter or someone to help you understand, if you feel you need to.

When you see your health or care professional

  • Take someone you trust if you feel you need support
  • Say if you need more information or there is something you do not understand
  • Let them know if you need the information presented differently
  • If there is a word that you cannot understand ask them to write it down and explain it
  • Tell them you want to be involved in decisions
  • Tell them what matters most to you
  • Take notes or ask a friend or family member to do it for you
  • Check what will happen next and when
  • Find out who to contact if you have problems or questions
  • Ask for copies of any letters written about you.

Four questions to ask

There are four main questions to think about when considering your treatment options.  Remember the initials BRAN:

  • What are the benefits?
  • What the risks?
  • What are the alternatives?
  • What if I do nothing?

Below are some questions you might want to ask for each of these areas. They are only a guideline. If there is anything else you want to know, ask.

Benefits

  • What are the benefits of each treatment?
  • What are the chances each treatment will work?

Risks

  • How will the treatment affect me?
  • What are the possible side effects?
  • How will this treatment affect my lifestyle?

Alternatives

  • What are the other options open to me?
  • What are the benefits and disadvantages of those?
  • Could I try one if the first option does not work?

Nothing

  • What are the benefits if I choose to do nothing now?
  • What are the disadvantages if I do nothing now?
  • If I do not have treatment for now will the condition get worse?
  • Will it be more difficult to treat later?

Your rights

You have the legal right to be involved in decisions about your care.

A Supreme Court ruling in 2015 shifted consent in medicine from the ‘prudent clinician’ test to a ‘prudent patient’ test (Montgomery v Lanarkshire Health Board).

This means medical staff have a duty to ensure you are aware of any ‘material risks’ involved in a treatment and reasonable alternatives.

This was a significant change in the law.

The Health and Social Care Act 2012 also placed a new duty on the NHS to involve patients in their own care.

This means:

  • Information must be easy to understand
  • You should be given time to talk through your options and raise concerns
  • You should be told about the pros and cons.

You also have the right to see copies of any letters written about you

Are there any exceptions?

There are rare occasions when it is not possible or in your best interest for health and care professionals to agree your treatment with you. These are:

  • In an emergency when they need to act straight away.
  • If you ‘lack the capacity’ to make decisions
  • If you are being treated under some sections of the Mental Health Act.

For more information on lacking capacity to make decisions see our leaflets ‘Advance decisions’ and ‘Adult social care’.

Sources

Source material for the information contained in this leaflet is available on request.

Contact the Patients Association helpline

The Patients Association offers a free national helpline providing specialist information and advice to help patients make sense of their health and social care.  

Patients can talk directly to trained advisers in strict confidence about any concerns, questions or general experiences they have regarding the NHS and social care systems.  

The helpline is open from 9.30 am to 5pm, Monday to Friday, and calls outside these times are returned as soon as possible during opening hours. 

If you would like to contact the helpline, please call free on 0800 345 7155, or visit the Patients Association helpline page on our website for more information.