Medical Matters > Treatments: Informed consent

ME Essential Spring 2024

Question

The new NICE guideline on ME/CFS contains some very helpful information and recommendations on the way in which doctors should listen to and believe their patients who have ME/CFS (as well as parents of children with ME) and the way in which ME should be managed. But this is only guidance.

Is there anything from the General Medical Council that would be relevant to situations where treatment decisions are being discussed and where there are potential risks as well as benefits?

I ask from the point of view of personal experience: My GP wanted me to try a course of antidepressants- even though I am not suffering from depression. It was a well-meaning encounter but he wasn’t really happy when I explained that there wasn’t any evidence to show that ME can be treated with antidepressants.

Answer

As you correctly indicate, NICE produces guidance for doctors and not instructions about what to do.

So doctors are still allowed to use what is called their clinical judgement. However, doctors who decide to prescribe a treatment that is not recommended by NICE run a serious risk of litigation if that treatment then makes a person worse as a result.

The simple answer to your question about the role of the General Medical Council is yes.

The GMC produces detailed and normally very sensible guidance (and instructions) on all aspects of how doctors should deal with their patients, especially in relation to the information they need to be providing when discussing treatment options. In relation to what is called informed consent, some of the key points from this guidance are:

10.e: You must give patients the information they want or need to make a decision. This will usually include the potential benefits, risks or harm, certainties about and likelihood of success for each option, including the option to take no action .By ‘harm’ we mean any potential negative outcome, including a side effect or complication.*

(* See paras 21-24)

21: You must give patients clear, accurate and up-to date information, based on the best available evidence, about the potential benefits and risks of harm of each option, including the option to take no action.

23: You should usually include the following information when discussing benefits and harms.

  • Recognised risks of harm that you believe anyone in the patient’s position would want to know. You’ll know these already from your professional knowledge and experience.
  • The effect of the patient’s individual clinical circumstances on the probability of a benefit or harm occurring. If you know the patient’s medical history, you’ll know some of what you need to share already, but the dialogue could reveal more.
  • Risks of harm and potential benefits that the patient would consider significant for any reason. These will be revealed during your discussion with the patient about what matters to them.
  • Any risk of serious harm, however unlikely it is to occur.*
  • Expected harms, including common side effects and what to do if they occur.

25: You must answer patients’ questions honestly and accurately, and as fully as is practical in the circumstances. You must be clear about the limits of your knowledge and, if you can’t answer a question, explain whether it is something you are uncertain of or something that is inherently uncertain.

Link to full GMC document: https://tinyurl.com/yc4696zh

MEDICAL DISCLAIMER

Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.

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