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About this guidance

This guidance is written for parents who experience disrespect from one or more healthcare professional (your doctor or health visitor, a nurse or midwife, a receptionist at a practice etc) because of their parental healthcare decisions. It lays out how parents should, in our view, handle such a situation. As each situation is different, we can only put in general terms how to respond to most common scenarios and how Consent can help.

EVERYTHING IN THIS DOCUMENT ASSUMES THAT YOU ARE BEING REASONABLE IN YOUR DECISION AND THAT YOU ARE YOURSELF ACTING IN A RESPECTFUL WAY.

Content

• Are you being reasonable to go against medical advice?
• What guidelines govern your healthcare providers conduct?
• How to respond to disrespectful professionals
• Threats of de-registration
• Threats of informing social services
• Should you complain?
• How to complain

Are you being reasonable to act against medical advice?

While it is difficult to generalise, in most cases the following examples are reasonable healthcare decisions you may be making on behalf of your child.

a) You have been prescribed medication for your child for a mild illness or as a precaution or in response to a vague or uncertain diagnosis and have decided not to give your child the medication.
b) You have been prescribed antibiotics for your child for a viral infection.
c) You don’t want to give antipyretic drugs for a child’s fever.
d) You decided to stop antibiotic medication when your child’s symptoms subsided.
e) You have been recommended vaccinations which you do not want to give your child.
f) You are a breastfeeding mother and are being urged to stop and to switch to formula, based on your baby not gaining weight in line with national averages.
g) You are declining vitamin k after birth.

On the other hand you are in all likelihood not being reasonable if for example
a) you are refusing blood transfusion in an emergency
b) your child has been diagnosed with a serious infection (e.g. meningitis) where prompt medical intervention is essential and are refusing recommended treatment

What guidelines govern your healthcare providers conduct?

GMC (General Medical Council) Guidelines state very clearly that doctors have to respect patients’ decisions.
Doctors have to listen to you and respect your views. They have to give you any relevant information you want or information they think you need, and they have to give it in a balanced way and without pressure. Part of this is to inform you about side-effects, complications and the possibility that a treatment won’t work. A patient can refuse any recommended treatment even if the reason seems irrational to the doctor or for no reason at all. The GMC asks doctors to explain to you their concern and the possible consequences of your decision but they must do this without pressure. They also have to give you adequate time to make your decision.
Further, GMC guidelines require doctors to be polite and considerate.

The very first rule of the Nursing and Midwifery Council code is: treat people with kindness, respect and compassion
Nurses and midwives also have to recognise diversity and individual choice and uphold and respect people’s human rights. Section 2 of the code highlights the need for respecting the varying degrees to which patients want to get involved with their healthcare decisions, including the right to refuse care or treatment. Section 4 states that nurses and midwives must “make sure that you get properly informed consent and document it before carrying out any action”.

How to respond to disrespectful professionals

Disrespect is often subjective, so that the same behaviour will make one person feel harassed while another person shrugs it off. Bear this in mind in any interaction or communications with your healthcare professional. It may be better to say how you feel / felt (e.g. “I felt angry/stressed/harassed”) than make accusations (e.g. “you harassed me”). They will quite naturally disagree with you and there is nothing to be gained by making them feel defensive.
It is also worth remembering that they didn’t get up that morning with the intention of annoying a patient but instead got caught up in the situation because of the disagreement between you and them. Naturally this doesn’t justify inappropriate behaviour but our approach is one which attempts to help both sides understand the other. Consider how many patients will benefit if you can remain calm and help the person you are dealing with see things more proportionally, so that they act in a more measured way next time. Put your points across or simply state that you will have to agree to disagree. They should respect this. You do not need to stay if they don’t. Say that you will come back when everyone has calmed down. This may be appropriate in cases where you are being accused of being neglectful or harmful towards your child. If you decide to stay, you may want to remind them of the relevant code of conduct.

Threats of de-registration

In the UK you as the patient always have the right to “take your business elsewhere” when it comes to choosing your GP. The practice too has the right to stop seeing you. However, for them it’s not as simple as it is for you.

The British Medical Associations says:
“Normally the sole criterion for removal should be an irretrievable breakdown of all or part of the patient-practice relationship, usually that between patient and doctor”.

The practice has to give a warning and a reason. Refusal to follow medical advice is not an adequate reason. Usually deregistering a patient should only be done for aggressive behaviour and threats of violence. Doctors have to make a genuine effort to restore the relationship and consider alternatives.

If your GP practice is threatening to deregister you because of your parental healthcare decisions, and assuming you want to stay with them despite this, we may be able to help you by trying to point out that they are being unreasonable.
If they are determined to go ahead anyway, their justification is likely going to be a simple “breakdown of relationship” and there is in reality nothing you can do to stop them. You can complain (see below) but although the practice will face censure for inappropriately deregistering patients, only you can decide if it is worth your while. A successful complaint may make then think twice in the future.
Your NHS area team can find you a new GP.

Threats of informing social services

We have published separate guidance material about parental healthcare decisions and state intervention.

Anyone can report concerns about a child’s welfare to social services and professionals often have a duty to do so. Whether or not your decisions justify such a referral is of course a matter of opinion but medical staff may well tell you that “we have to report you” if you don’t change your mind. This can happen in some highly inappropriate cases, such as the use of preventative treatment for illness which may or may not affect your child in the future, treatment for a condition that isn’t yet properly diagnosed or treatment which has a speculative benefit in your child’s circumstances.

There is obviously little point arguing over any legal points involved with the medical staff who will in all likelihood know little about them, even if you do. Some parents experience sudden panic at the mentioning of social services. Seeing that ultimately they can apply to court to have children removed, this is a fear which any parent can understand. If you feel you can’t remain calm or make a proper decision at that moment, ask for time.

You can go outside for a few minutes or tell them you will call in a few hours or the next day when everyone has calmed down. This should sound reasonable in all but the most dire emergency. You can also agree to an appointment for treatment even if you aren’t sure yet that you will attend. You can then speak to a friend, return with someone to support you or contact Consent for advice.

Should you complain?

The view of Consent is that complaining about a healthcare professional is rarely going to get you the outcome you want. However, it can be the right thing to do in appropriate circumstances in order to encourage a change in culture and to help prevent similar cases in the future.

If you want to continue your patient relationship with a doctor, a practice, a hospital etc and you want the healthcare professionals to listen to you, then a complaint is not going to help. Consider expressing your disappointment in more reconciliatory ways. If, however, the relationship has already broken down and you intend to go elsewhere, then complaining about disrespectful behaviour may help send the right message to the professional concerned. Your aim should be to help other parents have a better experience in the future and to help the professional reassess their attitude.

How to complain

You can raise a concern about the conduct of a healthcare professional with their professional body. This effectively says that you do not believe their behaviour met the professional standards set for them.

To complain about the conduct of a doctor, go to:
https://www.gmc-uk.org/concerns

To complain about the conduct of a nurse or midwife, go to:
https://www.nmc.org.uk/concerns-nurses-midwives/dealing-concerns/

Another route is to complain to the practice, the hospital or the relevant NHS body, such as NHS England. A good start will be to talk to your local Patient Advice and Liaison Service. If the NHS does not deal with the matter to your satisfaction, you can raise it with the Parliamentary and Health Service Ombudsman.

If your complaint relates to NHS Wales, you can read more about how to complain here.

If your complaint relates to NHS Scotland, you can read more about how to complain here.

If your are in Northern Ireland, you can read more about how to complain here.