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.

Valid consent is required before any medical treatment may be carried out (unless there is a court order). Valid consent has to be made voluntarily, has to be informed and has to be made by someone who is competent to make it.
Treating a patient without valid consent can open a healthcare professional to charges of battery as well as being relevant in any negligence litigation.

informed…
means a) that patients need to be given enough information to understand the nature and purpose of the treatment in question and b) that any other relevant information has to be provided.

a) Is relevant to both criminal charges and civil action. If the information isn’t provided, charges of battery are possible as well as negligence claims if the patient suffers injury from the treatment. If a) is done but not b) the practitioner is still open to charges of negligence, for example if possible complications and side-effects were not mentioned. The practitioner doesn’t have to inform their patient of absolutely everything, which in any case would be impossible. They need to make them aware of material risk.

Since the UK supreme Court case of Montgomery, the question of what is or isn’t significant is defined as follows.
“The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it.”

Any misrepresentation will invalidate consent.

Voluntary…
means “consent must be given voluntarily and freely, without pressure or
undue influence being exerted on the person either to accept or refuse treatment. Such pressure can come from partners or family members, as well as health or care practitioners.” (quoted from Department of Health Consent Guidelines)
What behaviour or action counts as pressure or undue influence enough to invalidate consent is a matter for the courts (or professional body) to decide in any particular case. It seems likely that unreasonable threats of all kinds would count as undue influence.
Consent would also argue that schools are an environment unsuitable for giving voluntary consent in some circumstances, due to peer and other pressure.

Competent…
means the patient consenting must have the mental capacity to make the decision. How this applies to children is explained below.

Children
For children under 18, who are deemed not competent to make their own decisions, parental consent is required for any treatment to take place. Whether or not a child is competent
to make a decision depends on a number of factors, such as the child’s maturity and the treatment in question.
Usually the consent of any one person with parental rights is sufficient. In some cases, such as vaccinations and non-therapeutic male circumcision, if one parent refuses, the consent of the other is not enough and the courts need to decide. Whether you consent to a treatment or refuse, either way your decision has to be made with the child’s best interest in mind.
If the child is considered competent, they can consent to their own treatment, assuming the consent is informed and voluntary.

Up to the age of 16 a child is seen as competent to give consent if they have the ability to understand and weigh up the options.

At the age of 16 and 17 a young person is assumed to be competent. However, unlike adults, the refusal of a competent person aged 16–17 may be overridden by a court if the young person’s decision is likely to lead to death or serious permanent injury.

In some cases, parents and doctors cannot agree on whether to carry out a certain treatment. If the child isn’t competent to give consent, doctors can only override parental refusal by applying to the courts to decide what is in the child’s best interest, or in an emergency.

This list is based on UK regulatory guidelines and best practice (General Medical Council) and is aimed at most common situations. Its aim is to help parents and medical staff ensure that parental consent to any intervention has lawfully been obtained and to encourage best practice.
Children should be included in the process as appropriate to their level of maturity.

Has valid consent been obtained from the patient?
– Has required information been given in ways the parent/child can understand? This should include diagnosis & prognosis, any uncertainties, treatment options incl. option not to treat, purpose of each treatment, incl. any risks and likelihood of success, side-effects & complications, in particular serious adverse outcomes.
– Has the information been given in a balanced way, disclosing any conflicts of interest? Has the parent / child been encouraged to ask questions?
– Have staff checked if the information is understood and whether more information is wanted?
– Has the parent or child been told they can change their mind at any time?
– Have they been given time to decide?
– No pressure has been put on parents and their decision has been respected?
– Are the medical staff involved suitably trained, have sufficient knowledge of the proposed investigation or treatment, incl. risks involved, and understand the GMC guidelines?
– If consent is given by a competent minor, has all relevant information been provided and discussed before they were assessed as competent to understand such information?

Conflict between parents
Normally consent of only one parent suffices in law but in some cases, such as vaccination, sterilisation & circumcision both parents need to consent. If medical staff are aware of conflicting views between parents in such cases, treatment cannot proceed. A court needs to decide.

Conflict between parents and medical staff
If parents of a competent minor refuse treatment which is thought to be in the child’s best interest, only a court can override this refusal.
A child’s best interest is not merely what is clinically indicated, but includes their own views, parents views, cultural and religious beliefs and values and the views of other professionals.

CONTENT

Introduction
1. Can they really report you to social services?
2. What will Social Services do?
3. What should you do?
4. What will happen next?
5. EPOs
6. Other state interventions
Summary

INTRODUCTION

As a parent reading this document, it is likely you have come across stories about children being removed by social services because the parents didn’t agree with doctors’ medical advice, declined a certain treatment, pursued alternative treatments or declined vaccinations or other medication.

Some such cases do exist. However they are rare. The law tries to strike a balance between safeguarding children and respecting family life and in the main, the balance is right. The wording of relevant legislation, such as the Children Act 1989, as well as law passed down in form of judgments by the higher courts, is generally the right balance. However, this does not mean that all professionals working with children will always get it right, including medical staff, teachers and social workers. It is possible that you will encounter people with extreme views who will consider your healthcare decisions a safeguarding issue. Of course you need to also bear in mind that it may be you who has the extreme view and continue reassessing your decision.

This guidance is meant to give you an overall understanding of the law, as well as help you understand the possible reasons and motivations behind actions taken by social services or medical staff and how to reduce the chance of any state interference.

EVERYTHING IN THIS GUIDANCE ASSUMES THAT YOU ARE YOURSELF BEING REASONABLE AND DO NOT POSE A THREAT TO YOUR CHILD.

1. Can they really report you to social services?

The answer is yes, regardless of who “they” are, because even a member of the public can make such a referral if they have concerns about a child’s welfare. Professionals, such as doctors, nurses, teachers, etc even have a duty to report concerns. Whether or not your healthcare decision is a matter of such concern, is of course a matter of opinion. This is left to their judgment, by and large. The law does not expect the person reporting you to get it right. Instead the onus is on social services to assess the situation.

2. What will Social Services do?

If a local authority receives a referral about a child, they have to investigate the matter. They need to assess if there really is a safeguarding issue and if so, what action to take. Depending on the outcome they can choose to do nothing or take further actions, which can include applying for court orders. At this point they only need reasonable cause to suspect that a child is suffering (or likely to suffer) significant harm. Often a referral alone is enough to satisfy this requirement. This doesn’t necessarily mean that you will be visited by a social worker. Social services may simply enquire if the professional has any other concerns in addition to the parental healthcare decision and if not, decide that no further action is required.

3. What should you do?

To start with it is worth remembering that most social workers are well-meaning, hard-working and kind professionals. Some may even be on your side, so do not assume that they are the enemy unless you find yourself confronted by an overzealous and unreasonable individual.

If a social worker visits you, let them in and let them meet your child. Refusing to do so will make matters worse as it will put social services under an obligation to escalate the case. The law says that they have to obtain access to the child, so it isn’t even their choice. If they can’t, they will be forced to apply for court orders, which may mean they return with the police and a warrant. Court orders can also require anyone who may know where the child is to tell. The best approach is therefore to co-operate and why not be nice to the social worker who calls? They will appreciate the change from the hostility they so often encounter. Answer their questions as far as is reasonable and let them speak to your child if appropriate. If you have advance notice of a visit, you may want to ask a friend or relative to be there with you at the time.

It is worth repeating and stressing that the advice so often given on social media to “never let anyone in” or to decline all co-operation is wrong! Even if the social worker wants nothing more than to close your case without further action, they now can’t. Help them help you and chances are nothing more will come of it.

4. What will happen next?

All going well, you should hear from social services that no further action will be taken and that the case has been closed. However, there are a number of other possibilities. Social Services will normally have to keep you informed. For example if they arrange a Case Conference about your child, you should be included in it. Equally, if they intend to make any sort of application to a court, you should receive notice in advance. Needless to say you should attend both a conference and any hearings. A local authority needs reasonable cause to believe that your child is suffering or likely to suffer significant harm before they can apply to a court.

Parents are understandably worried about their children being taken from them whenever there is social services involvement. Sadly it has happened in inappropriate circumstances and will no doubt happen again. It is therefore important to get advice immediately if the case does not end after the first visit. The threshold for removal of a child is extremely high. When it happens inappropriately, it is normally because the lower courts have not acted in line with the directions of the higher courts. A good indication of how averse the higher courts are to the removal of children can be seen in the following two quotes.

5. EPOs

Sometime social services apply for Emergency Protection Orders (EPOs), which allow for the removal of a child (or other action to be taken) for a period of at most 15 days. You may get very little notice of any related hearing. Courts can also hear applications without telling you about them but this must only happen in wholly exceptional cases.

Emergency protection is for just that: an emergency. It means imminent danger that is actually established and not just suspected or likely. A situation of concern does not become an emergency simply because social services have only just become aware or it. You may have to remind the court of this and point out why your case does not constitute an emergency. Even if the court grants the order, social services have to keep considering alternatives to removing a child and they have to return a child if the situation changes, even before the order has expired. An EPO gives the local authority parental rights but they cannot make any long-term decisions. They can decide where the child should live, for example, but not have her vaccinated.

Care proceedings would be the next step for social services to commence if they were of the opinion that a child needs to be permanently removed but this takes us beyond the scope of this guidance document.

6. Other state interventions

Worth mentioning here are two further state interventions. The police has powers to remove a child if significant harm to the child is likely without taking this action. This needs no court order but can last for only a maximum of 72 hrs. The child has to be returned if the danger has passed before then. A child being taken into police protection puts an obligation on social services to investigate the matter but they are free to return the child. Further, there is something called the inherent jurisdiction of the High Court, which can be called on in circumstances which do not fit any scenario foreseen by the law makers. The high-profile case of Ashya King fits this example. The High Court’s powers over a child are theoretically limitless and include making a child a ward of court. In such a case no major steps affecting a child may be taken without the court’s permission.

Summary

Social services should not intervene unless they suspect significant harm. Considering the very limited resources and high case loads affecting most social services departments, social workers are unlikely to pursue your case unnecessarily or unreasonably, if you can reassure them at the earliest opportunity that there is no safeguarding issue. However, you should get advice immediately if the case is not closed despite your efforts to co-operate. Make sure social workers and courts can see that you are a loving, reasonable and balanced parent open to listening to views other than your own. Remind them of the very high threshholds set by the higher courts.

Consent is a charity supporting parental healthcare decisions. We aim to be a balanced voice for parents, facilitating and promoting better understanding between parents and healthcare professionals.

Most parents are not medically trained and rely on doctors for accurate diagnosis and treatment recommendations. However, it is also now common for parents to form their own opinions and to make decisions on behalf of their child which may be contrary to the medical advice they have received.

The supreme court in the case of Montgomery said in 2015:

“The social and legal developments which we have mentioned point away from a model of the relationship between the doctor and the patient based upon medical paternalism. they also point away from a model based upon a view of the patient as being entirely dependent on information provided by the doctor. What they point towards is an approach to the law which, instead of treating patients as placing themselves in the hands of their doctors (and then being prone to sue their doctors in the event of a disappointing outcome), treats them so far as possible as adults who are capable of understanding that medical treatment is uncertain of success and may involve risks, accepting responsibility for the taking of risks affecting their own lives, and living with the consequences of their choices.”

This statement sums up well the change in attitude among patients over recent decades, as acknowledged by the courts.
 Parents have a duty to make decisions in the best interest of their child. In extreme cases doctors can ask a court to override a parental decision. They cannot, however, override it themselves.
The clinical Manual of Fever in children describes the excessive fear of fever among both parents and doctors as “fever phobia” and finds such fears “unfounded”.
It points out that:

There is considerable evidence that fever promotes host defence against infection, i.e. is an important defence mechanism.

Complications and mortality are closely related to severity of underlying disease, not level of fever.

Fever does not climb up relentlessly and does not normally exceed 42 C.

Temperature above 42C suggest hyperthermia (different causes, symptoms and 
management to fever).

Febrile seizures only occur in genetically susceptible children and are not usually 
dangerous.

Fever does not damage the central nervous system.

The principle complication of fever is dehydration, which can be prevented by providing 
extra fluid to the child.

Antipyretics do not prevent febrile seizures.

Antipyretics have no positive influence on the underlying disease and may be counterproductive.

The analgesic effect of the drug makes the child feel better. This does not mean we have reduced the severity of the disease. However it may encourage the child to take more fluids.

NICE guidelines broadly confirm this position:

Antipyretic agents do not prevent febrile convulsions and should not be used specifically 
for this purpose.

Do not use antipyretic agents with the sole aim of reducing body temperature in children 
with fever.

Consider using either paracetamol or ibuprofen in children with fever who appear 
distressed.

When using paracetamol or ibuprofen in children with fever:
 continue only as long as the child appears distressed
, consider changing to the other agent if the child’s distress is not alleviated
; do not give both agents simultaneously
; only consider alternating these agents if the distress persists or recurs before the 
next dose is due.

It is important to note that these guidelines are, in effect, asking doctors to use paracetamol (acetaminophen) and ibuprofen as analgesics, not as fever lowering agents.
Many parents may feel that the benefits of fever as a defence against infection outweigh the use of paracetamol and ibuprofen to relieve distress.
Medical professionals should not confuse the refusal of antipyretics with the refusal of antibiotics in case of a diagnosed serious bacterial infection. Here an antibiotic may save lives while an antipyretic will often lead to a higher chance of adverse outcomes. Refusing antipyretic medication is therefore usually reasonable and can be as a sign of a well-informed parent. Much re-education is still needed in correcting our society’s view on fever and these parents should therefore be welcomed. However they rely on doctors and their expertise to quickly diagnose and treat serious underlying conditions.

Heinz Eichenwald, professor of paediatrics at the South Western Medical School, University of Texas – Bulletin of the World Health organization 2003, 81 (5):
“Fever represents a universal, ancient, and usually beneficial response to infection, and its suppression under most circumstances has few, if any, demonstrable benefits. On the other hand, some harmful effects have been shown to occur as a result of suppressing fever: in most individuals, these are slight, but when translated to millions of people, they may result in an increase in morbidity and perhaps the occurrence of occasional mortality. it is clear, therefore, that widespread use of antipyretics should not be encouraged either in developing countries or in industrial societies.”

To Whom It May Concern
Subj. parental vaccination decisions

Consent is a charity supporting parental healthcare decisions. We aim to be a balanced voice for parents, facilitating and promoting better understanding between parents and healthcare professionals.

Our charity is being contacted by many parents who tell us they feel pressured or even harassed by their GP surgery for declining, delaying or selectively accepting vaccinations for their children.

The vast majority of healthcare professionals respect parental vaccination decision just as their professional standards require. We are making the following points only because a small minority do not.

Professional Standards
The General Medical Council requires doctors to treat patients with respect and to be polite and considerate. These requirements still apply, even if staff fundamentally disagree with a parent’s decision.
It is unprofessional to accuse parents of neglect, exert pressure by inducing fear or guilt, label them selfish, suggest their decision will result in financial loss to the practice or to repeatedly raise the matter at unrelated appointments and/or through unwanted phone calls and messages. Unfortunately all the above continue to be reported to us.

Safeguarding
Non-vaccination in the absence of any other concerns does not and never has constituted a safeguarding issue. It is therefore inappropriate to threaten a parent with referral to the Local Authority on safeguarding grounds for this reason alone. It causes stress and resentment among patients and diverts social service resources away from real safeguarding issues.

Removal of Patients
Parents have reported being told they will be removed from the surgery’s list and refused further treatment should they continue to decline vaccinations. Such action is only justifiable if the doctor-patient relationship has permanently broken down, despite real efforts from the surgery to restore it. Justifying such a measure on grounds of non-vaccination is against General Medical Council and British Medical Association guidelines.