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Parental-Healthcare-Decisions-Dealing-with-Healthcare-Professionals

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.

Empowering-Children-1.0

Introduction
It is an established legal principle in the UK that children can make their own healthcare decisions (within certain limitations) if they are considered competent, that is, mentally and emotionally mature enough. Such a child is called Gillick competent, after the court case that established this law.
Following media reports that children of secondary school age may be offered the Covid-19 vaccination in school from September 2021, this subject has found renewed interest. As with HPV and teenage booster vaccinations, schools should notify parents of scheduled vaccination dates and send consent forms. However, a competent child can override parents’ decision to consent or to refuse consent.
This document aims to give parents and others with parental responsibility practical guidance on empowering children to make informed decisions around consent and to help prepare them for the consequences of this decision.
As a charity we work for respect for parental healthcare decisions. We do not tell parents what to do and we rarely take a position for or against any particular healthcare measure. However, we do consider it reasonable for parents to decline vaccinations. Declining a prophylactic medication when a child isn’t ill would not normally sound controversial, was it not for the polarised and emotive debate surrounding vaccinations.
At the time of writing (May 2021) there is considerable opposition to vaccinating children against SARS-CoV-2 among scientists. See for example the BMJ here and here and the Lancet here and here.
What follows in this document should be read in this context.
Consent and Gillick competence in the context of school vaccinations
The law courts in the UK accept that children become more mature and autonomous as they get older and that this gives them the right to make their own medical decisions in certain circumstances. Young persons aged 16 or 17 are assumed to have that maturity and they can decide for themselves, except in some extreme cases. Below that age, each case is judged on its merits. How mature is the child? How serious is the decision they are making and what are the consequences? Vaccinations are not considered a serious intervention and it has to be expected that the courts will see Covid-19 vaccines in the same light. This sets the level of competence needed to make that decision relatively low.
When Gillick competence was established as a legal test, its application was fairly narrow. Over the years, however, the child’s competence to decide for themselves has become a factor in all sorts of areas, including school vaccinations, disagreement between parents themselves, disagreement between parents and doctors and disagreement between parents and state authorities.
It is right that children’s views are taken into account. A school environment poses problems, however. Our charity has written to NHS trusts and Public Health England to highlight these issues and we believe that obtaining valid consent from a child in such a setting is unrealistic. However this hasn’t been tested in court and parents are therefore best advised to assume that their consent or refusal of consent is not going to be the final word.
Gillick Competence and Valid Consent
In most situations no medical intervention may be administered without valid consent. In order for it to be valid, i.e. lawful, consent must be:
@ given voluntarily and freely, without pressure or undue influence being exerted on the person either to accept or refuse treatment.
@ informed, which means your child needs to be given age-appropriate information to understand the nature and purpose of the vaccination as well as any relevant information pertaining to risk.
@ given by a child who has the ability and sufficient maturity to understand what is involved and weigh up the options.
See also Understanding Valid Consent in Medicine and Consent Process Check List
Although the Care Quality Commission expects Health Care Professionals to be trained in Gillick competence assessments, we have not found any evidence of any consistently applied training or even an assessment framework. We have asked NHS trusts, Public Health England and care commissioning groups about any training given to school immunisation teams but have not had a response at the time of writing.

The Process of Empowering our Children
A multi focus approach is needed to empower children to make an informed decision which will stand up to possible scrutiny and judgement by peers and teachers. Putting our emotions aside, we can equip our children to anticipate and manage the consequences of standing by the decisions they may have to make in our absence.
Listening and being child-led are key to this process. It is vital to keep communication open and non-judgemental, regardless of the direction the child is taking. It is hard to support your child in their choice if communication breaks down and you subsequently don’t know the entire picture.
@ Be mindful of how difficult it is for a child to juggle the expectations of other people in positions of authority, peer pressure, and the wishes and beliefs of parents. Your child will respond to what you do, not what you say. They will either follow what you do or do the opposite, depending on how they feel about you and their own sense of what is right.
@ Regardless of how difficult this process is for you, come alongside your child to build a foundation of knowledge as a solid basis for future critical thinking, rather than avoiding the issue in the hope that it does not exist or doesn’t affect you, and them.
@ Every child is different and will have different motivators. You know your child better than anybody. A child driven by performance, or by being “good”, will respond differently to a child motivated by acceptance, for example. Use your unique knowledge of your child and what drives them to enlighten, prepare and empower them.
Take your time. Plan for several sessions and discussions. Prepare beforehand.
Why the Parent’s Respect for the Child’s Choice is Important
Parenting the decision-making process built on free will is far more powerful than imposing your point of view on your child. The reality is that your children will have to make decisions increasingly by themselves as they get older and they may have to communicate their choice independently and robustly in a situation where their right to privacy may not be honoured.
Understanding the Decision-Making Process using Identity Aspects
Guiding your child through a sound decision-making process, by allowing them to deconstruct and analyse the issue against key aspects of their own identity provides them with a vital life skill. It will also add to their development and understanding of who they are in this world. Consider gradually introducing concepts you wish them to consider, pacing the effort so as not to overwhelm. You may start by selecting topics of interest to them as research subjects first.
@ Mind: Prepare the process by discussing your child’s own perceived strengths. Keep age and level of independence as your guides and be child-led in terms of pace and scope. Find examples where they were able to firmly stand their ground on issues important to them.
@ Free Will: A child communicating a decision made of their own free will is more robust and confident when faced with scrutiny from peers and authority figures. A child acting from a place of obedience or compliance is more easily influenced by others and can become distressed. It is important that you and your child understand, without judgement, where they are on this spectrum of independence and work out how best to support them.
@ Knowledge: Discuss with your child the importance of having a broad-spectrum knowledge base from which to begin the process of making an informed choice. Explore their current level of knowledge, have them ask questions and plan how to acquire the information lacking.
Constructing the Decision-Making Process
Don’t be afraid to discuss the science behind the illness and the vaccine. We make science-based decisions about all sorts of things on a daily basis: foods we eat, medical interventions we choose, etc. Use a variety of reputable resources. If you find inconsistencies over time or across agencies, compose questions about these together.
@ Before broaching the issue: Decide on a topic they are interested in and compare the results of a Google search against a different search engine or the coverage of one media outlet against another. Using this skill, look at research on a topic of their choosing and examine who commissioned/funded each item and why. Explain what conflicts of interest are. Examine information sources, their ‘community standards’ and how they influence our perceptions. Highlight vague or propaganda language and the fact that sometimes it’s not what is said but what is left out that causes distortion of facts. Give examples of media stories with a slant. Before examining the facts that are presented, unpack information sources and question with your child how reliable they are and whom they represent.
@ Vaccination Risk/Benefit Analysis: Look up and discuss what the media and school say are the benefits and risks of choosing to have this vaccination. Regardless of your parental viewpoint, don’t gloss over the benefits. Transparency and authenticity are pivotal to your child trusting you on the issue. Your child will be deluged with the benefits of vaccinations at school, so the importance of unpacking the risk/benefit ratio is essential for them to be able to develop a sound decision-making process. The next step is to explore official documentation on risk. Once you have the data, you can prepare a risk/benefit analysis. This can be a table or a pair of lists of pros and cons. Be sure to weight the items according to how important they are to your child by prioritising them. Depending on your child, it may be appropriate to have factual references next to each of those points so they can then count or discount certain points depending on the evidence they have researched.
Social, Emotional and Societal Pressure
@ Consequences of making the decision: Be mindful of your child’s personality and their confidence in standing up in situations where they are in a minority. Be sensitive to how difficult this prospect may be for them and how that could influence their decision. It is important they realise that agreeing to have the vaccine because they don’t want people to be mean to them is not consent. Discuss the concept of being a leader and a follower and the consequence of being either. It is important that they know they have the right to say if they are being made to feel uncomfortable.
@ People in Position of Authority: Help your child to identify when people in a position of authority are voicing opinion rather than fact and to recognise this in other life situations.
@ Standing Strong: If your child’s opinion is different from the one being presented by the school, empower them to challenge this in a way that shows they are critically thinking rather than being rebellious. They may want to ask about the danger Covid-19 poses to their age group or seek their teacher’s opinion on any of the reserch they have done with you.
@ A Right to Privacy: Ensure your child understands that they have the right to make their decision without having to justify it. Their medical choices shouldn’t have to be discussed with teachers, strangers or in front of their school friends. If your child has made their decision with you and is being challenged at school to justify their choice, they can simply refuse to engage in debate. It is when going against a parent’s decision that a child should be assessed for competence and prove they have the required knowledge, not otherwise.
@ Logistics: Prepare your child for the logistics of how vaccines are likely to be administered in a school environment and discuss coping strategies based on their decision. Having prior notice of vaccine administration day is important and there may be a build-up in conversations at the school. They may feel singled out on the day if they have chosen not to have the vaccine. You could discuss scenario-based coping strategies to help them through. Consideration may be given to missing school on the day of the vaccine administration. If your child is anxious about the whole situation, then this tactic could be used as an avoidance strategy. Be aware that catch-up days are often not announced in advance, so it is possible that the school vaccination clinic may be set up again, without notice, to ‘mop up’ those who have not yet received the vaccine. In the long term the decision will still have to be made.
@ Coping Strategies: Discuss how to conduct or avoid the discussion by using avoidance, abstinence or measured responses. If the children are asked to put their hand up in class to identify their vaccination choice, they may choose not to participate. In a conversation, they can bring up a new topic. If they wish to discuss the issue, they can carry an item that exemplifies their decision, e.g. their risk/benefit analysis. This will help reinforce that theirs was a thoughtful decision-making process, although it is important they know that they are under no obligation to do this. They could simply smile and walk away. Let your child know that you are a team and that you will support them in their choices.
Acknowledging your child’s feelings about what is going on with class mates on a daily basis is important to avoid your child becoming anxious or even depressed about it. Encourage your child to maintain friendships with those who have made different decisions from theirs. They are not enemies all of a sudden just because they have different views. Also, that when they are ready and, on their terms, then a discussion between them is healthy and can even strengthen their friendship through mutual respect.
Body Autonomy and changing one’s mind
If a child consents to receiving a vaccine, this is not irrevocable. They can change their mind at any time, up to the moment the vaccine is about to be administered. All they need to say is “I have changed my mind, I don’t want it”. Talk to your child about what words they would use should they ever find themselves in that situation. They may feel confident and say they are withdrawing their consent, or they may want to express that they are really not sure about it and would prefer to delay. The wording is secondary. What matters is that they decline having the vaccine at that time.
In the unlikely event that they are being ignored, they have every right to get up and leave or to physically resist. We do not expect this to ever become necessary but even without going to extremes, it can be helpful to get up or to leave the room as a gesture of finality and to show that no discussion is wanted.
Advocating for your Child
If you feel that your child is at risk of making a medical decision without fully understanding the consequences or due to pressure from others, consider writing a calm, measured letter to the school.
You could state that you do not believe your child understands the consequences of accepting or declining the vaccine and therefore lacks Gillick competence. Warn them that you will ask to see verbatim records of how such competence was assessed. You could also say that you do not believe their consent would be lawful due to pressure from others.
|Appendix 1 – Ways to identify undue influence
The following points are adapted from Biderman’s Chart of Coercion (various versions are available online), originally published by Amnesty International in a report on torture. It has since been used for domestic abuse cases and can also help parents identify undue influence exerted on their child. Remember to check your own influence on your child as well.
@ Induced fear of losing social support or of being discredited or ridiculed
@ Rejection of alternate information and separate opinions. Rules exist about permissible topics to discuss. Communication is highly controlled.
@ Negative consequences for any actions that show resistance or independence
@ Wearing someone out emotionally so that resistance becomes too costly; compliance in order to be left alone
@ Being singled out or publicly shamed
@ Prolonged pressure to change one’s mind
@ Told or implied that bad things will happen if they don’t comply; implied blame for the suffering of others; non-compliance labelled “selfish”
@ Not respecting body autonomy
@ Rules that are illogical or contradictory but have to be followed because they are rules
|Appendix 2 – Quality of Information
When performing research, it is important to assess the quality of information that is most readily accessible. These days, the first few pages of results from any online search are from sources that agree with government policy and may not reflect best science. Below are some examples allowing you to compare and assess data sources for independence and balance.
@ Look up the community guidelines if it is a social media site. For example YouTube community guidelines say: “YouTube doesn’t allow content that … contradicts local health authorities’ or the World Health Organization’s (WHO) medical information about COVID-19.“
@ Watch reporting from a mainstream news outlet such as the BBC. Do you find balanced information being broadcast?
@ Check the funding and collaboration patterns of the information source in questions. For example the UK medicines regulator MHRA has published its board members’ conflicts of interest or check the conflict of interest information included in any medical journal publications.
@ Pick out a leaflet or learning material from school and talk about whether it gives balanced information or reads like promotional material. For example, here is one that has been critiqued by a UK GP.
@ Compare the language of how dissenting voices are portrayed, for example here vs here.
@ Review these articles in the New York Times and the BMJ and consider the consequences on available information.
@ On 11th September 2019 a doctor from the Wellcome Trust appeared on BBC Radio 4’s Today programme blaming anti-vaxxers for the resurgence of Scarlet Fever. However, the UK has never had routine Scarlet Fever vaccinations. What does this mean and how does it affect their trustworthiness?
@ Compare internet searches for “children covid vaccination” to “bmj children covid vaccination” or “lancet children covid vaccination”. The BMJ and Lancet are world-leading medical journals. How do the results compare?
|Appendix 3 – Data sources
Once you are ready to start looking at the actual data, you will need sources that are reliable and well referenced. It would not be right for us to tell you what information to look up or how much weight to give to each. However, if you don’t know where to start, some of the following points may be helpful.
Sources:
UK medicines regulator MHRA information on vaccines safety
Office of National Statistics Coronavirus data
BMJ – a leading medical journal
The Lancet Infectious Diseases – a leading medical journal
Pubmed – international database of medical research and scientific literature
The Green Book – UK government immunisation manual
VAERS – US based vaccines adverse events reporting system

Some questions to challenge yourself
How has official advice changed over time? What was official policy a year ago (e.g. on wearing masks, vaccine passports, mandatory vaccinations)? What is the policy now?
How is vaccine efficacy measured? Do all scientists agree that the measure is adequate?
Why is there a campaign asking that all clinical trial data should be made public, not just what pharmaceutical companies choose to publish? Why does it matter?
Is there a scientific consensus that vaccinating children against Covid-19 is a good idea? What does the government’s Green Book say?
Does the vaccine stop someone from contracting Covid-19 or from spreading it?
|Appendix 4 – Consent process check list relating to children under 16
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?

Understanding-Consent-in-Medicine-v1.2.1

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.

Consent-tick-sheet

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.

Parental-Healthcare-Decisions-and-State-Intervention

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.

antipyretics

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.”

Pregnancy-and-childbirth1.2

Consent in Pregnancy and Childbirth

In the UK it is unlawful to administer any medical treatment without first obtaining valid consent. This principle also applies to expectant mothers and their unborn babies. A mother- to-be cannot be forced to agree to any appointment, examination or treatment, nor to give birth in hospital.

An unborn fetus is not a child in law and therefore the Children Act 1989 does not apply. There is no “best interest of the child” test, nor can any decision by the mother-to-be constitute a safeguarding issue until the child is born.

is it legal to “free birth”, refuse scans, refuse recommended c-section etc?

Yes. You do not have to accept any examination or treatment and you can give birth without any help (unassisted or “free” birth) if you really want to. However, any person helping you give birth may commit an offence if they are not a doctor or registered midwife.

Pressure to agree to interventions

It is becoming increasingly popular to have “natural” pregnancies and births with minimal medical intervention, including giving birth at home or other non-hospital setting.

There is no evidence that this poses an increased risk in most pregnancies. As with all medical interventions you should receive relevant information and be allowed to decide without undue pressure. Although you have the right to refuse all medical intervention, this doesn’t necessarily mean it is a good idea, especially if your pregnancy does not count as low-risk. Your doctor or midwife will have a duty to inform you of the possible consequences of declining a procedure and you should listen to them. However, if you persist in your decision, they must not exert undue influence. If you agree to a treatment because you were told that otherwise you will not be seen again at the hospital or practice or that they will inform social services, your consent will not have been freely given and the medical intervention will be unlawful.

Mental Capacity

Medical treatment can be given in an emergency without consent if you do not have the mental capacity to make your own decisions at that time, for example if you are unconscious, drowsy, intoxicated or suffer from a mental health condition. Medical staff have to take into account (but not necessarily adhere to) any birth plan and opinions from your next of kin. Intervention without your consent should be exceptional. It is rare that a woman giving birth can be seen as lacking capacity. In particular a person does not lack capacity solely because their choice is seen as unwise.

state intervention

Once your child is born, the legal situation changes and state authorities can and do obtain court orders in advance of birth, if they believe your baby is at risk of suffering significant harm. However, this should very rarely affect your birth choices and is usually used in cases where parents are known to social services and are unable to offer their babies acceptable levels of care. Even if a pregnant woman was to decline any and all medical attention during pregnancy and childbirth, this could not necessarily be interpreted as posing a risk to the child after birth.

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

vaccinations-v1.2

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.