Drs Code of Ethics and the HSE’s National Healthcare Charter make it clear that informed consent is required before any treatment/medication can be given. Consent must be voluntary and informed and the person giving it must have capacity. Adults have the right to control their own lives and decide what happens to their own bodies.
Are you consenting to be treated by doctors who do not believe ME exists?
Are you finding it challenging to avoid treatments or therapies that are harmful?
Are you being gaslighted by a doctor or other medical professional?
You could make a Limitation of Consent statement, a document which you could prepare in advance and take with you to medical appointments which you anticipate might be challenging.
Informed consent takes place on a routine basis in all healthcare settings usually without incident, however, historically some ME patients have experienced problems because they have been prescribed treatments or therapies that have been harmful. They have been referred towards or forced into inappropriate referrals often with disastrous results. Those inappropriate directions could include psychiatric, psychological, medically unexplained or functional neurological disorder (FND).
What is the Limitation of Consent statement
The Limitation of Consent statement has no legal force but it provides a statement that can be shown to the healthcare provider at an appointment if you feel you are being treated in an inappropriate way. The statement explains that from this point forward the consent for treatment is being withdrawn.
The purpose of the Limitation of Consent statement
- to act as as memory aid during the medical appointent for the patient/parent/carer/guardian and
- to provide written support for withdrawal of consent if the patient/parent/carer/guardian becomes concerned about the direction the appointment is taking.
You could put your limitation of consent statement in writing, sign it, get your signature witnessed and dated, then give a copy to your GP and any clinic to which you are referred on the day of an appointment/surgery/other, and keep in your personal medical file for future appointments.
The statement is designed for situations where you may be uncertain, or simply anxious, about an imminent appointment. It is intended for use as a fallback, rather than as a pre-emptive strike.
NB: Submission of the form in advance of an appointment could run the risk of setting up a hostile reaction so any such move should be approached with caution.
Unless it is a doctor you know and trust who has satisfied you that he or she regards ME as a physical illness, you could start any new consultation by asking the doctor/specialist if they will read it and agree with it, and that they confirm they will see you and treat you in accordance with it.
The intention is that there will be an end to gaslighting and an end to harmful practices.
The important words are ‘I do not consent' i.e., I do not consent to being seen or treated by any doctor or health professional who does not regard ME, or my symptoms diagnosed on x date by doc y as ME as a physical, neurological disease with physical origins.
I do not consent to being seen by X who regards ME as psychosomatic, psychological, psychiatric, MUS, a somatisation disorder or FND or similar.
If your doctor or other healthcare professional does not comply they are working without your consent.
How to make a Limitation of Consent statement
The Consent to Treatment Statement may be adapted for personal use. See our template Consent to Treatment Statement here.
Complete the statement to suit you, then sign, print your name, date and ask someone to witness your signature by signing, printing their name and adding their address or job.
Then copy your document for your doctor's surgery and other clinics and keep one in your own file to take with you if you go into hospital.
Please see further guidance below.
Consent to Treatment Form & Guidance
The article via link below by Valerie Eliot Smith (UK) provides useful guidelines and a Consent to Treatment Form template which needs to be adapted for the HSE & Irish health services.
The HSE has a Consent Policy so the template Consent Form can be revised with reference to that policy.
The useful template is included below for you if you have an immediate need but it needs:
a) Irish clinical guidance reflecting Irish health services and experiencesb) Irish Limitation of Consent forms which reference HSE, Children’s Hospital Ireland and other Voluntary Hospital Group consent policies.
It is a useful starter for you though if you need protection urgently.
The Limitation of Consent to Treatment Form template offers an example of how to communicate concerns about being forced into treatment by medics who are not familiar with ME. It includes Template Form & Guidance Notes by Valerie Eliot Smith, ME patient and barrister (UK).
NB: Please note that the above advice from Valerie is for UK patients which can be adapted for use in your country.
Further steps you can take to protect yourself
If you are concerned that at some point in the future if you become very severe a doctor may try to get you sectioned in a psychiatric ward there are two further options.
You might want your doctor to sign a written/typed piece to say that he regards you as competent to make decisions about your medical care, and you can request that this statement is to remain in your notes in future until you revoke it in writing.
The name and address of a solicitor is useful in case you are subjected to questions, but you could simply ask your solicitor to witness your signature.
Consent and capacity
"Every adult patient is presumed to have the capacity to make decisions about their own health care. Their doctor has a duty to help patients to make decisions for themselves by giving them information in a clear and easy-to-understand way and by making sure that they have suitable help and support.
Patients have the right to have an advocate (family member/carer/friend/spouse/formal or imformal advocate of their choice during discussions about their condition and treatment.
Adults who are considered not to have the capacity to make a decision are entitled to the same respect for their dignity and personal integrity as anyone with full capacity. The doctor should seek and listen to their views, and involve them in decisions about their healthcare to the extent that they are willing and able to be involved.
A lack of capacity may arise from a long-term or permanent condition or disability, or from short-term illness or infirmity.
A person lacks capacity to make a decision if they are unable to understand, retain, use or weigh up the information needed to make the decision, or if they are unable to communicate their decision, even if helped. " - Guide to Professional Conduct and Ethics for Registered Medical Practitioners 2019
See more about consent & capacity from page 15 of the above named guide here.
Thanks to Valerie Eliot Smith for sharing information and for the Limitation on Consent for Treatment form and guidance notes as well as for some information included above. Thanks also to Eleanor Rosen who worked with Valerie on the consent to treatment form and guidance.
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