Times article - calls to end transgender 'experiment' on children

[EweSurname]

Looks like it's dropped!

Don’t read it cos if you don’t read then you will be safe. But who will be safe ?

People who are under services such as Mermaids and Webberly.

And from what ?

Doubting. Questioning. Having their eyes opened to different perspectives. Realising the reality of what has been sold to them and how it has been dishonestly disguised and what regulations and policies and standards have been breached for individuals to pursue their own personal agendas.

Joan McAlpine was amazed at the rage of 'having their privileged position questioned' : it's official. Facts, whistleblowing, safeguarding, law and policy are transphobic. Transphobia is in effect anything but surrender of all barriers and everyone else's safety and interests, and blind following of the cult.

Can open. Worms everywhere.

I'm confused about Webberley. She's currently suspended but is still speaking as a panellist at trans health events, and GenderGP is still seeing and prescribing to patients? Is that allowed?

dr Helen Webberley seems very confident/well supported
Dr Mike Webberley (also under GMC review & restrictions) is the prescribing Dr at 'GenderGP' online private clinic

The Safeguarding & Duty of Care concerns that are being raised about Tavistock is a service criticised repeatedly by Drs Webberley & other TRAs including some Mermaids parents for being too cautious/conservative

The GMC seems to be taking a very long time to review the DRs Webberley cases. I believe some of the complaints came from gender specialists at GIDS whom Dr Helen Webberley has previously described them as 'mafia' like.

October 2018
www.mumsnet.com/Talk/womens_rights/3385789-Helen-Webberley-found-guilty

www.mumsnet.com/Talk/womens_rights/3387210-Contrast-to-BBC-reporting-on-Helen-Webberley-Times-GP-guilty-of-running-illegal-sex-change-clinic

December 2018
www.mumsnet.com/Talk/womens_rights/3441380-Criminal-gender-GP-Helen-Webberley-fined-12k

OldCrone Mon 03-Dec-18 wrote:
"The gender GP website now has Dr Mike Webberley as the transgender specialist. The GMC number on the site is 2620107 which is Michael Webberley's GMC number.

According to the GMC, Michael Webberley's specialism is gastro-enterology. He also has conditions attached to how he can practise:

1. He must not prescribe controlled hormone treatment to patients without a consultation in person and which includes an appropriate physical examination.

5.a. He must complete a log of all patients under his direct care and which documents how they are monitored, and the prescriptions they receive from him. b. He must give a copy of these logs to the interim orders tribunal at his next review hearing, and these should also be made available by him to the GMC on request."

www.gmc-uk.org/registration-and-licensing/the-medical-register/a-guide-to-the-medical-register/find-a-doctors-record

Well that was £1.80 well spent. It will be on the kitchen table for some time.... might find its way to the staffroom also...

Thank you jounalists.

May be worth photocopying the four articles for passing on to MPs, School Governors etc

(do please respect copywrite of course, I know some of the monitors worry about this )

Thanks R0wantrees

Hard copy bought today. Thank you The Times for sharing facts and whistle blowing.

Amazing. Bookmarking to read through all this later.

Dare I hope we are beginning to make a difference?

The report of the Times piece in the DM may be of some utility as it's one link, and whereas (I think) the times sharetoken access expires, the DM piece is afaik there in perpetuity.

Thanks R0wantrees

I feel like saying that every time I come on here.

I emailed The Times Editor to let them know what I thought of Lucy Bannerman's piece. Also mentioned something else they might want to dig a bit deeper into.

OK I'm going to make a few length posts. This is parts 1 and part 2 of the GMCs guidance on consent. I've left part 3 out (it can be viewed via the link) which is capacity issues because this is about consent generally about adults over 18. The capacity stuff that is more relevant is contained in a specific guidance for 0 - 18 which I'll also post shortly.

Bold is mine

I apologise for its lengthy but I think it's worth sharing the lot because there are so many points that the clinicians raise which if they didn't they would be acting outside the GMC guidance if they practiced without considering them.

www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/consent/part-1-principles

1 All healthcare involves decisions made by patients and those providing their care. This guidance sets out principles for good practice in making decisions. The principles apply to all decisions about care: from the treatment of minor and self-limiting conditions, to major interventions with significant risks or side effects. The principles also apply to decisions about screening.

2 Whatever the context in which medical decisions are made, you must work in partnership with your patients to ensure good care. In so doing, you must:

a) listen to patients and respect their views about their health
b) discuss with patients what their diagnosis, prognosis, treatment and care involve
c) share with patients the information they want or need in order to make decisions
d) maximise patients’ opportunities, and their ability, to make decisions for themselves
e) respect patients’ decisions.

Partnership
3 For a relationship between doctor and patient to be effective, it should be a partnership based on openness, trust and good communication. Each person has a role to play in making decisions about treatment or care.

4 No single approach to discussions about treatment or care will suit every patient, or apply in all circumstances. Individual patients may want more or less information or involvement in making decisions depending on their circumstances or wishes. And some patients may need additional support to understand information and express their views and preferences.

5 If patients have capacity to make decisions for themselves, a basic model applies:

The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.

The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.
The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all.
If the patient asks for a treatment that the doctor considers would not be of overall benefit to them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be of overall benefit to the patient, they do not have to provide the treatment. But they should explain their reasons to the patient, and explain any other options that are available, including the option to seek a second opinion.

6 If patients are not able to make decisions for themselves, the doctor must work with those close to the patient and with other members of the healthcare team. The doctor must take into account any views or preferences expressed by the patient and must follow the law on decision-making when a patient lacks capacity.

7 The exchange of information between doctor and patient is central to good decision-making. How much information you share with patients will vary, depending on their individual circumstances. You should tailor your approach to discussions with patients according to:

~ their needs, wishes and priorities
~ their level of knowledge about, and understanding of, their condition, prognosis and the treatment options
~ ^the nature of their condition
the complexity of the treatment, and
the nature and level of risk associated with the investigation or treatment.^

8 You should not make assumptions about:

~ the information a patient might want or need
~ ^the clinical or other factors a patient might consider significant, or
a patient’s level of knowledge or understanding of what is proposed.^

9 You must give patients the information they want or need about:

~ the diagnosis and prognosis
~ any uncertainties about the diagnosis or prognosis, including options for further investigations
~ ^options for treating or managing the condition, including the option not to treat
the purpose of any proposed investigation or treatment and what it will involve^
~ the potential benefits, risks and burdens, and the likelihood of success, for each option; this should include information, if available, about whether the benefits or risks are affected by which organisation or doctor is chosen to provide care
~ whether a proposed investigation or treatment is part of a research programme or is an innovative treatment designed specifically for their benefit
~ the people who will be mainly responsible for and involved in their care, what their roles are, and to what extent students may be involved
~ their right to refuse to take part in teaching or research
~ their right to seek a second opinion
~ any bills they will have to pay
~ any conflicts of interest that you, or your organisation, may have
~ any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.

10 You should explore these matters with patients, listen to their concerns, ask for and respect their views, and encourage them to ask questions.

11 You should check whether patients have understood the information they have been given, and whether or not they would like more information before making a decision. You must make it clear that they can change their mind about a decision.

Answering questions
12 You must answer patients’ questions honestly and, as far as practical, answer as fully as they wish.

Reasons for not sharing information with patients
13 No one else can make a decision on behalf of an adult who has capacity. If a patient asks you to make decisions on their behalf or wants to leave decisions to a relative, partner, friend, carer or another person close to them, you should explain that it is still important that they understand the options open to them, and what the treatment will involve. If they do not want this information, you should try to find out why.

14 If, after discussion, a patient still does not want to know in detail about their condition or the treatment, you should respect their wishes, as far as possible. But you must still give them the information they need in order to give their consent to a proposed investigation or treatment. This is likely to include what the investigation or treatment aims to achieve and what it will involve, for example: whether the procedure is invasive; what level of pain or discomfort they might experience, and what can be done to minimise it; anything they should do to prepare for the investigation or treatment; and if it involves any serious risks.

15 If a patient insists that they do not want even this basic information, you must explain the potential consequences of them not having it, particularly if it might mean that their consent is not valid. You must record the fact that the patient has declined this information. You must also make it clear that they can change their mind and have more information at any time.

16 You should not withhold information necessary for making decisions for any other reason, including when a relative, partner, friend or carer asks you to, unless you believe that giving it would cause the patient serious harm. In this context ‘serious harm’ means more than that the patient might become upset or decide to refuse treatment.

17 If you withhold information from the patient you must record your reason for doing so in the patient’s medical records, and you must be prepared to explain and justify your decision. You should regularly review your decision, and consider whether you could give information to the patient later, without causing them serious harm.

Sharing information
18 How you discuss a patient’s diagnosis, prognosis and treatment options is often as important as the information itself. You should:

~ ^share information in a way that the patient can understand and, whenever possible, in a place and at a time when they are best able to understand and retain it
give information that the patient may find distressing in a considerate way^
~ involve other members of the healthcare team in discussions with the patient, if appropriate
~ ^give the patient time to reflect, before and after they make a decision, especially if the information is complex or what you are proposing involves significant risks
make sure the patient knows if there is a time limit on making their decision, and who they can contact in the healthcare team if they have any questions or concerns.^

19 You should give information to patients in a balanced way. If you recommend a particular treatment or course of action, you should explain your reasons for doing so. But you must not put pressure on a patient to accept your advice.

20 You may need to support your discussions with patients by using written material, or visual or other aids. If you do, you must make sure the material is accurate and up to date.

21 You should check whether the patient needs any additional support to understand information, to communicate their wishes, or to make a decision. You should bear in mind that some barriers to understanding and communication may not be obvious; for example, a patient may have unspoken anxieties, or may be affected by pain or other underlying problems. You must make sure, wherever practical, that arrangements are made to give the patient any necessary support. This might include, for example: using an advocate or interpreter; asking those close to the patient about the patient’s communication needs; or giving the patient a written or audio record of the discussion and any decisions that were made.

Involving families, carers and advocates
22 You should accommodate a patient’s wishes if they want another person, such as a relative, partner, friend, carer or advocate, to be involved in discussions or to help them make decisions. In these circumstances, you should follow the guidance in paragraphs 7 - 21.

Obstacles to sharing information
23 It is sometimes difficult, because of pressures on your time or the limited resources available, to give patients as much information or support in making decisions as you, or they, would like. To help in this, you should consider the role that other members of the healthcare team might play, and what other sources of information and support are available.
These may be, for example, patient information leaflets, advocacy services, expert patient programmes, or support groups for people with specific conditions.

24 You should do your best to make sure that patients with additional needs, such as those with disabilities, have the time and support they need to make a decision. In all cases, you must treat patients fairly and not discriminate against them.

25 If you think that limits on your ability to give patients the time or information they need is seriously compromising their ability to make an informed decision, you should raise your concerns with your employing or contracting authority. See paragraph 25b of Good medical practice and the explanatory guidance Raising and acting on concerns about patient safety.

Responsibility for seeking a patient's consent
26 If you are the doctor undertaking an investigation or providing treatment, it is your responsibility to discuss it with the patient. If this is not practical, you can delegate the responsibility to someone else, provided you make sure that the person you delegate to:

~ is suitably trained and qualified
~ has sufficient knowledge of the proposed investigation or treatment, and understands the risks involved
~ understands, and agrees to act in accordance with, the guidance in this booklet.
27 If you delegate, you are still responsible for making sure that the patient has been given enough time and information to make an informed decision, and has given their consent, before you start any investigation or treatment.

Discussing side effects, complications and other risks
28 Clear, accurate information about the risks of any proposed investigation or treatment, presented in a way patients can understand, can help them make informed decisions. The amount of information about risk that you should share with patients will depend on the individual patient and what they want or need to know. Your discussions with patients should focus on their individual situation and the risk to them.

29 In order to have effective discussions with patients about risk, you must identify the adverse outcomes that may result from the proposed options. This includes the potential outcome of taking no action. Risks can take a number of forms, but will usually be:

~ side effects
~ complications
~ failure of an intervention to achieve the desired aim.
Risks can vary from common but minor side effects, to rare but serious adverse outcomes possibly resulting in permanent disability or death.

30 In assessing the risk to an individual patient, you must consider the nature of the patient’s condition, their general health and other circumstances. These are variable factors that may affect the likelihood of adverse outcomes occurring.

31 You should do your best to understand the patient’s views and preferences about any proposed investigation or treatment, and the adverse outcomes they are most concerned about. You must not make assumptions about a patient’s understanding of risk or the importance they attach to different outcomes. You should discuss these issues with your patient.

32 You must tell patients if an investigation or treatment might result in a serious adverse outcome, even if the likelihood is very small. You should also tell patients about less serious side effects or complications if they occur frequently, and explain what the patient should do if they experience any of them.

33 You must give information about risk in a balanced way. You should avoid bias, and you should explain the expected benefits as well as the potential burdens and risks of any proposed investigation or treatment.

34 You must use clear, simple and consistent language when discussing risks with patients. You should be aware that patients may understand information about risk differently from you. You should check that the patient understands the terms that you use, particularly when describing the seriousness, frequency and likelihood of an adverse outcome. You should use simple and accurate written information or visual or other aids to explain risk, if they will help the patient to understand.

35 If a patient does not want to know about the possible risks of a proposed investigation or treatment, you must follow the guidance in paragraphs 13 - 17.

36 You must keep up to date with developments in your area of practice, which may affect your knowledge and understanding of the risks associated with the investigations or treatments that you provide.

Making decisions
The scope of decisions
37 You must explain clearly to patients the scope of any decisions to be made. This will apply particularly if:

~ treatment will be provided in stages, with the possibility that changes or adjustments might be needed
~ different doctors or healthcare professionals will provide particular parts of an investigation or treatment, such as anaesthesia and surgery
~ a number of different investigations or treatments are involved
~ uncertainty about the diagnosis or the options might only be resolved when the investigation or treatment has started, when the patient may be unable to make decisions.
38 In such cases, you should discuss and agree with the patient how decisions will be made about whether to make changes to the investigation or treatment plan. You should establish whether the patient agrees to all or only parts of the proposed plan. If they agree only to parts of it, you should make sure that there is a clear process through which they can be involved in making decisions at a later stage.

39 You must not exceed the scope of the authority given by a patient, except in an emergency. If an emergency arises, you must follow the guidance in paragraph 79.

Making decisions about potential future events
40 You should discuss with patients the possibility of additional problems coming to light during an investigation or treatment when they might not be in a position to make a decision about how to proceed. If there is a significant risk of a particular problem arising, you should ask in advance what the patient would like you to do if it does arise. You should also ask if there are any procedures they object to, or which they would like more time to think about.

Ensuring that decisions are voluntary
41 Patients may be put under pressure by employers, insurers, relatives or others, to accept a particular investigation or treatment. You should be aware of this and of other situations in which patients may be vulnerable. Such situations may be, for example, if they are resident in a care home, subject to mental health legislation, detained by the police or immigration services, or in prison.

42 You should do your best to make sure that such patients have considered the available options and reached their own decision. If they have a right to refuse treatment, you should make sure that they know this and are able to refuse if they want to.

Respecting a patient's decisions
43 You must respect a patient’s decision to refuse an investigation or treatment, even if you think their decision is wrong or irrational. You should explain your concerns clearly to the patient and outline the possible consequences of their decision. You must not, however, put pressure on a patient to accept your advice. If you are unsure about the patient’s capacity to make a decision, you must follow the guidance in Part 3.

Expressions of consent
44 Before accepting a patient’s consent, you must consider whether they have been given the information they want or need, and how well they understand the details and implications of what is proposed. This is more important than how their consent is expressed or recorded.

45 Patients can give consent orally or in writing, or they may imply consent by complying with the proposed examination or treatment, for example, by rolling up their sleeve to have their blood pressure taken.

46 In the case of minor or routine investigations or treatments, if you are satisfied that the patient understands what you propose to do and why, it is usually enough to have oral or implied consent.

47 In cases that involve higher risk, it is important that you get the patient’s written consent. This is so that everyone involved understands what was explained and agreed.

48 By law you must get written consent for certain treatments, such as fertility treatment. You must follow the laws and codes of practice that govern these situations.

49 You should also get written consent from a patient if:

~ the investigation or treatment is complex or involves significant risks
~ there may be significant consequences for the patient’s employment, or social or personal life
~ ^providing clinical care is not the primary purpose of the investigation or treatment
the treatment is part of a research programme or is an innovative treatment designed specifically for their benefit.^

50 If it is not possible to get written consent, for example, in an emergency or if the patient needs the treatment to relieve serious pain or distress, you can rely on oral consent. But you must still give the patient the information they want or need to make a decision. You must record the fact that they have given consent, in their medical records.

Recording decisions
51 You must use the patient’s medical records or a consent form to record the key elements of your discussion with the patient. This should include the information you discussed, any specific requests by the patient, any written, visual or audio information given to the patient, and details of any decisions that were made.

Reviewing decisions
52 Before beginning treatment, you or a member of the healthcare team should check that the patient still wants to go ahead; and you must respond to any new or repeated concerns or questions they raise. This is particularly important if:

~ significant time has passed since the initial decision was made
~ there have been material changes in the patient’s condition, or in any aspect of the proposed investigation or treatment
~ new information has become available, for example about the risks of treatment or about other treatment options.

53 You must make sure that patients are kept informed about the progress of their treatment, and are able to make decisions at all stages, not just in the initial stage. If the treatment is ongoing, you should make sure that there are clear arrangements in place to review decisions and, if necessary, to make new ones.

Involving children and young people in making decisions
54 You should involve children and young people as much as possible in discussions about their care, even if they are not able to make decisions on their own.

55 A young person’s ability to make decisions depends more on their ability to understand and weigh up options, than on their age. When assessing a young person’s capacity to make decisions, you should bear in mind that:

~ a young person under 16 may have capacity to make decisions, depending on their maturity and ability to understand what is involved
~ at 16 a young person can be presumed to have capacity to make most decisions about their treatment and care.

56 You must follow the guidance in 0–18 years: guidance for all doctors, and in particular the section Making decisions (paragraphs 22 - 41). It gives advice on involving children and young people in decisions, assessing capacity and best interests, and what to do if they refuse treatment. It also explains the different legal requirements across the UK for decision- making involving children and young people.

Advance care planning
57 If a patient:
~ has a condition that will affect the length or quality of their life, or
~ has a condition that will impair their capacity as it progresses, such as dementia, or
~ is otherwise facing a situation in which loss or impairment of capacity is a foreseeable possibility
~ you should encourage them to think about what they might want for themselves in the event that they cannot make their own decisions, and to discuss their wishes and concerns with you and the healthcare team.

58 Such discussions might cover:
~ the patient’s wishes, preferences or fears in relation to their future care, including any treatments they would want to refuse, and under what circumstances
~ the feelings, beliefs or values that may be influencing the patient’s preferences and decisions
^~ the relatives, friends, carers or representatives that the patient would like to be involved in decisions about their care
interventions that are likely to become necessary in an emergency, such as cardio-pulmonary resuscitation (CPR).^

59 You should approach such discussions sensitively. If the patient agrees, you should consider involving other members of the healthcare team, people who are close to the patient or an advocate.

60 If a patient wants to nominate someone to make decisions on their behalf if they lose capacity, or if they want to refuse a particular treatment, you should explain that there may be ways to formalise these wishes and recommend that they get independent advice on how to do this.

61 You must record the discussion and any decisions the patient makes. You should make sure that a record of the plan is made available to the patient and others involved in their care, so that everyone is clear about what has been agreed. This is particularly important if the patient has made an advance decision to refuse treatment. You should bear in mind that care plans need to be reviewed and updated as the situation or the patient’s views change.

Just ran out and bought a copy after seeing the first page of this thread.

Excellent journalism. I'm daring to hope this might make a difference.

blogs.spectator.co.uk/2019/04/it-is-now-transphobic-to-report-doctors-fears-about-trans-childrens-health/

James Kirkup’s blog post about MP reaction (inc Doughty) to Times articles

On the day Mermaids advertises for a Corporate Engagement Officer to "develop and implement effective strategic plans to deliver and grow sustainable income from our corporate partners, and develop a major donor program".
www.charityjob.co.uk/jobs/mermaids/corporate-engagement-officer/631991?tsId=6

Will now read Red’s consent stuff - looks fascinating!

Kirkup’s moderation and excellent attention to detail packs a punch

On the day Mermaids advertises for a Corporate Engagement Officer to "develop and implement effective strategic plans to deliver and grow sustainable income from our corporate partners, and develop a major donor program".

Well lets hope every single one of their corporate partners has read The Times today.

Confused and distressed children need help, but they shouldn't be getting it from such a narrow minded charity.

Great article by James Kirkup

Here is my suggestion to Mr Doughty, and other MPs following this debate: do your job properly. Instead of adding to the sum total of the dumb anger in the world, do your job and try to reduce it.

On the day Mermaids advertises for a Corporate Engagement Officer to "develop and implement effective strategic plans to deliver and grow sustainable income from our corporate partners, and develop a major donor program".

By contrast, the absence of any Mermaids paid employee or trustee with significant professional knowledge of health, child development, social care, education, Safeguarding & Child Protection etc should speak volumes.

This is parts 1 and part 2 of the GMCs guidance on consent. I've left part 3 out (it can be viewed via the link) which is capacity issues because this is about consent generally about adults over 18. The capacity stuff that is more relevant is contained in a specific guidance for 0 - 18 which I'll also post shortly.

I apologise for its lengthy but I think it's worth sharing the lot because there are so many points that the clinicians raise which if they didn't they would be acting outside the GMC guidance if they practiced without considering them.

Professor Carl Heneghan head of Evidence Based Medicine at Oxford was interviewed on Panorama & as a consequence of his analysis concluded that 'informed consent is not possible'

BMJ EBM Spotlight paper:
'Gender-affirming hormone in children and adolescents – Evidence review'
Posted on 25th February 2019

(extract)
"Gender dysphoria occurs when a person experiences discomfort or distress because of a mismatch between their biological sex and gender identity. Gender dysphoria can arise in childhood and adolescent which raises many questions about how best to handle the condition. This post sets out the current evidence for gender-affirming hormones in adolescents and children to aid decision making. (continues)

"Conclusions

There are significant problems with how the evidence for Gender-affirming cross-sex hormone has been collected and analysed that prevents definitive conclusions to be drawn. Similar to puberty blockers, the evidence is limited by small sample sizes; retrospective methods, loss of considerable numbers of patients in follow-up. The majority of studies also lack a control group (only two studies used controls). Interventions have heterogeneous treatment regimes complicating comparisons between studies. Also adherence to the interventions are either not reported or at best inconsistent. Subjective outcomes, which are highly prevalent in the studies, are also prone to bias due to lack of blinding, and many effects can be explained by regression to the mean.

The development of these interventions should, therefore, occur in the context of research. Treatments for under 18 gender dysphoric children and adolescents remain largely experimental. There are a large number of unanswered questions that include the age at start, reversibility; adverse events, long term effects on mental health, quality of life, bone mineral density, osteoporosis in later life and cognition. We wonder whether off label use is appropriate and justified for drugs such as spironolactone which can cause substantial harms, including death. We are also ignorant of the long-term safety profiles of the different GAH regimens. The current evidence base does not support informed decision making and safe practice."
blogs.bmj.com/bmjebmspotlight/2019/02/25/gender-affirming-hormone-in-children-and-adolescents-evidence-review/

Prof Heneghan:
"The current evidence base does not support informed decision making and safe practice."

www.mumsnet.com/Talk/womens_rights/3518188-BMJ-Prof-Carl-Heneghan-Evidence-Based-Medicine-Oxford-Panorama-Trans-Kids-Gender-affirming-hormone-in-children-and-adolescents-Evidence-review-concludes-There-are-significant-problems

I bought the Times in my lunch hour in support. Really can’t remember the last time I bought a newspaper and I’m glad it was such a quality edition.

And here is the specific guidance for children

It's interesting to read. The lawyers will have been through the times article when you consider the sheer scale of how many potential breeches of the GMC guidance there appear to be.

Until you read through this I don't think it's truly apparent.

0–18 years: guidance for all doctors
Guidance for all doctors

1 This guidance is for all doctors, but it may also be useful for children, young people1, those with an interest in their care, and anyone else who wants to know what guidance doctors are given.

2 The guidance is for all doctors, whether or not they routinely see children and young people as patients. Doctors should also be aware of the needs and welfare of children and young people when they see patients:

~ who are parents or carers
~ who are cared for by children or young people, or
~ who may represent a danger to children or young people.

3 Good medical practice states that doctors must safeguard and protect the health and well-being of children and young people. Well-being includes treating children and young people as individuals and respecting their views, as well as considering their physical and emotional welfare.

4 When treating children and young people, doctors must also consider parents and others close to them; but their patient must be the doctor’s first concern.

5 When treating adults who care for, or pose risks to, children and young people, the adult patient must be the doctor’s first concern; but doctors must also consider and act in the best interests of children and young people.

6 Children and young people may be particularly vulnerable and need to be protected from harm; they can often find it difficult accessing services or defending their rights; and they often rely on others for their well-being. They may have particular communication needs and may need help to make decisions.

7 Children and young people are individuals with rights that should be respected. This means listening to them and taking into account what they have to say about things that affect them. It also means respecting their decisions and confidentiality.

8 Doctors should always act in the best interests of children and young people. This should be the guiding principle in all decisions which may affect them. But identifying their best interests is not always easy. This is particularly the case in relation to treatment that does not have proven health benefits or when competent young people refuse treatment that is clearly in their medical interests. There can also be a conflict between child protection and confidentiality, both of which are vitally important to the welfare of children and young people.

9 Reaching satisfactory answers to these challenging questions may mean considering a number of difficult ethical and legal issues. The purpose of this guidance is to help doctors balance competing interests and make decisions that are ethical, lawful and for the good of children and young people.

10 The law relating to children and young people is complex and differs across the UK. Doctors who have children and young people as patients will need some understanding of the law as it applies where they practise. Summaries of the law contained in this guidance cannot be a substitute for up-to-date legal advice in individual cases.

11 When in doubt as to their responsibilities, doctors should seek the advice of experienced colleagues, named or designated doctors for child protection, or professional or regulatory bodies.

12 An assessment of best interests will include what is clinically indicated in a particular case. You should also consider:

~ the views of the child or young person, so far as they can express them, including any previously expressed preferences
~ the views of parents
~ the views of others close to the child or young person
~ the cultural, religious or other beliefs and values of the child or parents
~ the views of other healthcare professionals involved in providing care to the child or young person, and of any other professionals who have an interest in their welfare
~ which choice, if there is more than one, will least restrict the child or young person’s future options.

13 This list is not exhaustive. The weight you attach to each point will depend on the circumstances, and you should consider any other relevant information. You should not make unjustified assumptions about a child or young person’s best interests based on irrelevant or discriminatory factors, such as their behaviour, appearance or disability.

14 Effective communication between doctors and children and young people is essential to the provision of good care. You should find out what children, young people and their parents want and need to know, what issues are important to them, and what opinions or fears they have about their health or treatment. In particular you should:

~ involve children and young people in discussions about their care
~ ^be honest and open with them and their parents, while respecting confidentiality
listen to and respect their views about their health, and respond to their concerns and preferences^
~ explain things using language or other forms of communication they can understand
~ ^consider how you and they use non-verbal communication, and the surroundings in which you meet them
give them opportunities to ask questions, and answer these honestly and to the best of your ability^
~ do all you can to make open and truthful discussion possible, taking into account that this can be helped or hindered by the involvement of parents or other people
~ give them the same time and respect that you would give to adult patients.

15 You should make it clear that you are available to see children and young people on their own if that is what they want. You should avoid giving the impression (whether directly, through reception staff or in any other way) that they cannot access services without a parent. You should think carefully about the effect the presence of a chaperone can have. Their presence can deter young people from being frank and from asking for help.

16 You should take children and young people’s views seriously and not dismiss or appear to dismiss their concerns or contributions. Disabled children and young people can feel particularly disadvantaged in this respect.

17 Children and young people usually want or need to know about their illnesses and what is likely to happen to them in the future. You should provide information that is easy to understand and appropriate to their age and maturity about:

~ their conditions
~ the purpose of investigations and treatments you propose and what that involves, including pain, anaesthetics and stays in hospital
~ the chances of success and the risks of different treatment options, including not having treatment
~ who will be mainly responsible for and involved in their care
~ their right to change their minds or to ask for a second opinion.

18 You should not overburden children and young people or their parents, but give them information at an appropriate time and pace, and check their understanding of key points.

19 You should talk directly and listen to children and young people who are able to take part in discussions about their care. Young people who are able to understand what is being said and who can speak for themselves resent being spoken about when they are present. But younger children might not be able to understand what their illness or proposed treatment is likely to involve, even when explained in straightforward terms.

20 You should only keep the type of information described in paragraph 17 from children or young people if:

~ it would cause them serious harm (and not just upset them or make them more likely to want to refuse treatment)
~ they ask you to, because they would prefer someone else to make decisions for them.

21 You have the same duty of confidentiality to children and young people as you have to adults. But parents often want and need information about their children’s care so that they can make decisions or provide care and support. Children and young people are usually happy for information to be shared with their parents. This sharing of information is often in the best interests of children and young people, particularly if their health would benefit from special care or ongoing treatment, such as a special diet or regular medication. Parents are usually the best judges of their children’s best interests and should make important decisions up until children are able to make their own decisions. You should share relevant information with parents in accordance with the law and the guidance in paragraphs 27, 28 and 42 to 55.

22 You can provide medical treatment to a child or young person with their consent if they are competent, or with the consent of a parent or the court. You can provide emergency treatment without consent to save the life of, or prevent serious deterioration in the health of, a child or young person.

23 You should involve children and young people as much as possible in decisions about their care, even when they are not able to make decisions on their own.

Assessing the capacity to consent
24 You must decide whether a young person is able to understand the nature, purpose and possible consequences of investigations or treatments you propose, as well as the consequences of not having treatment. Only if they are able to understand, retain, use and weigh this information, and communicate their decision to others can they consent to that investigation or treatment. That means you must make sure that all relevant information has been provided and thoroughly discussed before deciding whether or not a child or young person has the capacity to consent.

25 The capacity to consent depends more on young people’s ability to understand and weigh up options than on age. When assessing a young person’s capacity to consent, you should bear in mind that:

~ at 16 a young person can be presumed to have the capacity to consent (see paragraphs 30 to 33)
~ a young person under 16 may have the capacity to consent, depending on their maturity and ability to understand what is involved.

26 It is important that you assess maturity and understanding on an individual basis and with regard to the complexity and importance of the decision to be made. You should remember that a young person who has the capacity to consent to straightforward, relatively risk-free treatment may not necessarily have the capacity to consent to complex treatment involving high risks or serious consequences. The capacity to consent can also be affected by their physical and emotional development and by changes in their health and treatment.

Children and young people who lack the capacity to consent

27 If a child lacks the capacity to consent, you should ask for their parent’s consent. It is usually sufficient to have consent from one parent. If parents cannot agree and disputes cannot be resolved informally, you should seek legal advice about whether you should apply to the court.

28 The legal framework for the treatment of 16 and 17-year-olds who lack the capacity to consent differs across the UK:

~ In England, Wales and Northern Ireland, parents can consent to investigations and treatment that are in the young person’s best interests
~ In England and Wales, treatment can also be provided in the young person’s best interests without parental consent, although the views of parents may be important in assessing the young person’s best interests (see paragraphs 12 and 13)
~ In Northern Ireland, treatment can be provided in the young person’s best interests if a parent cannot be contacted, although you should seek legal advice about applying for court approval for significant (other than emergency) interventions
~ In Scotland, 16 and 17-year-olds who do not have the capacity to consent are treated as adults who lack capacity and treatment may be given to safeguard or promote their health.

Young people who have the capacity to consent

29 You should encourage young people to involve their parents in making important decisions, but you should usually abide by any decision they have the capacity to make themselves (see paragraphs 30 to 33 and 46 - 52). You should also consider involving other members of the multi-disciplinary team, an independent advocate or a named or designated doctor for child protection if their involvement would help young people in making decisions.

If a young person refuses treatment
30 Respect for young people’s views is important in making decisions about their care. If they refuse treatment, particularly treatment that could save their life or prevent serious deterioration in their health, this presents a challenge that you need to consider carefully.

31 Parents cannot override the competent consent of a young person to treatment that you consider is in their best interests. But you can rely on parental consent when a child lacks the capacity to consent. In Scotland parents cannot authorise treatment a competent young person has refused. In England, Wales and Northern Ireland, the law on parents overriding young people’s competent refusal is complex. You should seek legal advice if you think treatment is in the best interests of a competent young person who refuses.

32 You must carefully weigh up the harm to the rights of children and young people of overriding their refusal against the benefits of treatment, so that decisions can be taken in their best interests. In these circumstances, you should consider involving other members of the multi-disciplinary team, an independent advocate, or a named or designated doctor for child protection. Legal advice may be helpful in deciding whether you should apply to the court to resolve disputes about best interests that cannot be resolved informally.

33 You should also consider involving these same colleagues before seeking legal advice if parents refuse treatment that is clearly in the best interests of a child or young person who lacks capacity, or if both a young person with capacity and their parents refuse such treatment. For further guidance on these issues see GMC guidance on consent and treatment and care towards the end of life.

Procedures undertaken mainly for religious, cultural, social or emotional reasons

34 Both the GMC and the law permit doctors to undertake procedures that do not offer immediate or obvious therapeutic benefits for children or young people, so long as they are in their best interests (see paragraphs 12 and 13) and performed with consent (see paragraph 27).

35 To assess their best interests you should consider the religious and cultural beliefs and values of the child or young person and their parents as well as any social, psychological and emotional benefits. This may be relevant in circumcision of male children for religious or cultural reasons, or surgical correction of physical characteristics that do not endanger the child’s life or health.

Research
36×Research involving children and young people can benefit all children; but they may be vulnerable because they cannot always recognise their best interests, express their needs or defend their rights.

37 Children or young people should be involved in research only when research on adults cannot provide the same benefits. They can be involved in research that has either:

~ potential benefits for children or young people generally, as long as the research does not go against their best interests or involves only minimal or low risk of harm (this would be research that involves, for example, asking questions or taking blood samples, the assessment of the risk depending on the view of the child or young person), or
~ potential therapeutic benefits for them that outweigh any foreseeable risks, which should be kept as low as possible.

38 Children and young people should not usually be involved in research if they object or appear to object in either words or actions, even if their parents consent. If they are able to consent for themselves, you should still consider involving their parents, depending on the nature of the research.

39 You must not put pressure on children, young people or their parents to consent to research in the expectation of therapeutic, financial or any other benefit.

40 Before involving children or young people in research you should seek advice and get the necessary approval from a relevant research ethics committee, the Medical Research Council or a medical royal college.

Donation, transplantation, organ and tissue storage and use

41×The Human Tissue Act 2004 and Human Tissue (Scotland) Act 2006 were passed following inquiries into the storage of children’s organs and tissue without the proper consent. The Acts make consent central to the lawful storage and use of children and young people’s organs and tissue, and to the removal of such material after death. The Human Tissue Authority regulates and issues codes of practice on activities covered by the Act in England, Wales and Northern Ireland. Scottish ministers have those powers in Scotland.