Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Dr Andy Green, chair of the BMA's medical ethics committee; and Dr Ursula Mason, chair of the Royal College of General Practitioners (RCGP) in the North. You are both welcome. I will hand over to you for some brief introductory remarks, and then we will take questions from members.

Dr Andrew Green (British Medical Association): Thank you very much for your invitation to attend. I am Dr Andrew Green. I chair the medical ethics committee of the British Medical Association. It is a pan-UK committee. We provide practical guidance to doctors and medical students on the day-to-day ethical difficulties that they face in their work. Our committee includes representation from Northern Ireland.

We understand the need for the legislation, and we support its intentions. However, as written, it fails to differentiate between two different groups: patients with capacity, who have the right to make their own decisions and whose consent is therefore vital for matters about their care; and patients without capacity, who really must be protected. The result is that, as written, the Bill is incompatible with the ethical principles that govern the interactions between doctors and patients. Patients who have capacity have a right to confidentiality, a right to autonomy, a right to control their data and a right to make decisions that may seem to others to be difficult to understand or, indeed, likely to cause them harm. Those core principles are enshrined in BMA ethical guidance and in guidance from the General Medical Council (GMC). They are set out in our written evidence to you. The BMA guidance states:

Ordinarily, such decisions should be respected.

Those ethical principles are important because they preserve mutual trust, and they are founded on an expectation of confidentiality. Health data, by its very nature, is uniquely sensitive, and people rightly expect significant safeguards and strict limitations on its use. It is particularly important that patients who are at risk feel that they can trust their doctor, because a loss of confidence among those patients may have a result that is the opposite of the intentions of the Bill. For example, should victims of domestic abuse believe that their confidential information would be disclosed without their consent, valuable opportunities to intervene would be lost and safeguarding referrals would decrease. Doctors simply cannot help patients who do not attend or do not speak candidly when they do. Medicine is no longer practised in a paternalistic fashion. It is the doctor's task to illuminate the paths that patients can then choose to follow; it is not the task of a doctor to force a patient down the path that doctor thinks best, particularly if that is against the wishes of the patient.

We suspect that those are unintended consequences of the Bill and believe that only minor changes to wording are needed to exclude patients with capacity from its scope. Such changes would in no way detract from the Bill's worthy intentions or, indeed, present any impediment to preventing repetition of the abuses that you are trying to prevent. Above all, we must avoid damage to trust between doctors and patients, and we must respect patients' rights to autonomy.

I will share a powerful quote from the BMA safeguarding toolkit. It is, I think, deliberately blunt:

The Chairperson (Mr McGuigan): Go ahead, Dr Mason.

Dr Ursula Mason (Royal College of General Practitioners NI): Thank you very much, Chair and members, for the opportunity to present oral evidence on behalf of the Royal College of GPs in Northern Ireland. We represent about 1,400 members, and, as many of you know, I am a practising GP in a large suburban practice with about 12,000 patients.

You have received our written evidence, and much of what I will say will probably mirror what Andy just talked about. However, I will highlight a few of our concerns about the Bill, focusing on how it would affect GPs and, importantly, our patients. To begin with, however, I acknowledge the spirit and intention of the Bill. It is a really important step towards placing adult safeguarding on a statutory footing in Northern Ireland and strengthening protections for adults at risk.

It is vital that families and patients have trust in the health and social care system and that the protection in it for vulnerable adults is adequate but balanced with their rights to privacy and confidentiality. Our first concern is about the definition of "adult at risk". Currently, that includes adults with the capacity to make their own decisions. Andy has already talked about the guidance under which we practise. GMC guidance states:

The definition in the Bill would force GPs to act against that guidance, jeopardising the rights of adults with capacity. We believe that that definition should be amended to include only adults who lack capacity under the terms of the Mental Capacity Act (Northern Ireland) 2016.

We have concerns about clause 8, which relates to the disclosure of medical records. It is imperative that the trusting and confidential relationship between a doctor and a patient be preserved, but that is at risk of being undermined by the Bill as it stands, because, when consent is refused, medical records could be shared under a production order, and that could apply to patients with capacity. The bottom line is this: disclosing patient information without the consent of an adult who has capacity will damage the doctor-patient relationship. If the confidentiality of that relationship is eroded in any way, if, for example, patients are worried that their information will not remain confidential, they will avoid getting help from their GP or another clinician. They may under-report symptoms, which is the last thing that we want our patients to do. It is vital that the Bill, with its excellent intentions on improving safeguarding, does not erode the trust and confidentiality between a doctor and a patient that are the foundation of effective care.

I will tell you about a patient. You will not be surprised to hear that I have changed some details to protect confidentiality and identities. We will call her "A". She is 70 years old and lives alone. A has a complex cardiac history and declining mobility. She has ulcerating leg wounds and requires the district nurse to call regularly to dress them. That nurse has expressed concern about her living conditions. Her house is full of rubbish; there is no doubt that there is a problem with vermin; and it is clear that she is not cooking or eating properly. She has been referred to social work for support on a number of occasions, but she has declined that every time.

I go to see A because she has worsening cardiac symptoms, which she minimises when I talk to her. She says, "It is not that bad, doctor". We talk about her well-being and the need for hospital intervention — a procedure that would improve her heart and reduce her symptoms — and, importantly, we discuss the risks of not doing that, which include sudden collapse and death. Her living conditions are a risk, absolutely, and her inability to cook and to self-care is also a concern for me but, ultimately, not her. A is at risk, but it is clear, as it has been on many other occasions, that she has full capacity and that, while she understands the concerns and risks that I articulate to her, she does not want additional help or support, nor does she want me to contact her family or external agencies to help her. I have a trusted relationship with her, but that can continue and I can continue to support her as best I can only within the ambit of her consent.

Like every other adult with capacity, A has every right to decline support, but the Bill would require me to act contrary to GMC guidance and to A's entitlement to make those decisions in her own interests, even if I think that they are unwise or irrational. Undermining that right would have such a detrimental impact on our relationship with patients. Removing the rights of adults with capacity risks fundamentally changing the trust and confidentiality that patients have and rely on in their relationship with us as doctors. If that were to happen, I would worry about patients like A whom we currently support and, just as important, those who, in the future, may choose to disclose harm and identify themselves as being at risk but, for whatever reason, are not ready to take the steps to address that; they have the capacity to make their own decisions.

Patients such as A need to feel heard, trusted and supported on their journey, and we should not legislate to remove their right of decision-making or their right to confidentiality. Ultimately, safeguarding works best when patients feel safe to speak openly. We fully support the need to protect vulnerable adults, but the Bill must strike a careful balance between safeguarding and the preservation of the confidential, trusting relationship between a doctor and a patient. I will stop there, and we will take questions.

The Chairperson (Mr McGuigan): Thank you both very much. You have introduced the Committee to an issue: the definition of capacity and dealing with people who have or do not have capacity. I was going to ask you to give some real-life scenarios, but, Dr Green, you talked about the example of domestic violence, and, Dr Mason, you gave the example of patient A. I will be honest with you: I will have to take a bit of time to process all that, because it throws up scenarios and contradictions when it comes to how, as policymakers, we do our job. As I said, it is the first time that I have heard that perspective. Everybody who has given evidence has by and large, with a few caveats, supported the Bill. The obvious question is this: did you have any discussion with the Department during the development of the Bill? Is the Department, including the people who drafted the Bill, aware of the issue?

Dr Mason: I am not aware of that. When the Bill was drafted, there were no discussions between the RCGP and the Department. Andy may be able to speak for colleagues at BMA. We did not feed into that process or express concern at that stage. When we were asked to submit evidence on the Bill, we read it and said, "Look, this will cause a concern". I appreciate that the example that I gave was complex, but such situations are really common in day-to-day life; they are part and parcel of what we do almost every day. As an example, it is a conglomeration of the cases of a couple of patients, as you will understand, but GPs up and down the country will recognise that challenge. As it stands, the Bill would create a real problem for us in doing what we do and in how we interact with our patients.

The Chairperson (Mr McGuigan): I am coming at this from a policy point of view. The witnesses in the previous session represented social workers, who are a key component in the Bill. GPs are another key component. I am surprised to hear you say that there was no interaction between your organisations and the Department when it was drafting such an important Bill. I am a bit shocked to hear that there was no engagement on it.

Dr Green: We in the BMA first came across it two or three months ago, because our staff were looking at the legislation. That is why we trust that it is an unintended consequence. I find it difficult to believe that it was drafted deliberately to remove the right from all of you sitting around the table to control your life, which is what this is about.

Please do not get the idea that we oppose the Bill. We wish to improve it to protect patients without capacity and those with capacity. We believe that it is simple to do that by amending the definition in clause 2, which will deal with our problems with clause 4, and by making it clear in clause 8 that disclosure applies only to patients who do not have capacity. We believe that that is all that needs to happen.

The Chairperson (Mr McGuigan): Fair enough. I have a few questions, but I will allow other members to come in, and then I will come back in at the end.

Mrs Dillon: We need to ask the departmental officials what their thinking was, but I think that I know what it was. I find myself in those circumstances as well. Families say to me, "You didn't do anything. You didn't intervene. You could've stopped this. Why did you not make him get treatment?" — if somebody who is terminally ill refuses treatment — "You never told us. Why didn't you tell us? We could've made him get treatment". The intentions were probably good. However, I agree with you, Ursula, because I deal with people every day in the exact same circumstances. People regularly come to me and disclose things that they do not want their family to know, and that puts me in a difficult position. Sometimes, I find myself thinking, "I need to tell somebody this, because I am worried and need to protect myself". That is probably the position that you would be left in if the Bill is left as it is. We need to find that out from the Department. My questions were on those issues, but you have superseded them, to be fair. It is about trying to find out what the Department's thinking was. Perhaps it has an alternative issue that means that it is not just a simple fix and that a wee bit more work needs to be done on it.

I am concerned about removing somebody's right to say, "I don't want the help that you're offering me, but thank you very much for offering it" and breaking down that relationship. I agree with you, because, in my consistency office, I face exactly the same situation. I do not want those people not to trust me and therefore not to have anybody to talk to. Are there any circumstances you can think of where you might say, "The safeguarding issue is a bigger issue than protecting your right for me not to share your information"?

Dr Mason: Fundamentally, you have hit the nail on the head about those really difficult conversations and how people feel. Andy talked about the fact that we do not act in a paternalistic way; we make decisions with patients. It is our job to give patients as much information and as much context as possible in the context of how they are and what their understanding is. We work with patients.

What I want the Committee to take away from this is that we are not saying, "It is up to you. You can decide", and off we go. If someone who is really at risk comes to see me — say, for example, it was a domestic violence scenario and they were worried about a family member whom I was going out to see — it is imperative that I do my best to talk them through the implications of disclosure versus non-disclosure. I would work hard to help them understand the benefits of disclosure and the benefits of my being able to take another step to help and support them. Sometimes, you get to do that over time. I come back to that trusted relationship. If you have a trusted relationship, it is much easier for you to support a patient on a journey to, at some point, saying, "Yes, that is OK", but you have to work at it. Again, it is about how we make sure that we allow our patients to make those decisions, that they have all the information that is there and around them and that we do that confidentially. We do not break confidences for that very reason.

There is only a small number of situations in which we would break confidentiality by disclosing information, and that decision is not really about safeguarding, unless other people are at risk. If others are at risk, it is a different story. It is important that we separate those things. These are adults; something is being done to them, not to people in their surroundings. That is why I gave the example of someone living on their own. If, for example, A is also a carer for her husband, B, who has dementia, that is a different story, because someone without capacity is relying on someone else and might be coming to harm. It is complex, which is why it is important that we get decisions right on this. At all costs, however, we must protect people's ability to say, "I understand what you are telling me but no, thank you".

Mrs Dillon: I have a quick follow-on question, if you do not mind, for my own understanding. I totally appreciate what you have said, particularly on issues of domestic violence. You build up a relationship and, maybe, over time, a person will trust you enough to say, "I trust you enough to help me here", but, if you disclose something, you may put their life in danger. That is an issue, but, if there were children in that home and you believed that they were in danger, I assume that there would be an automatic social services referral. That is all I wanted to ask.

Dr Green: There are three circumstances in which doctors can legitimately divulge confidential information. The most important one is with the patient's consent. That is what a doctor would work for in such circumstances. Modern safeguarding is all about person-centred care and having the flexibility not to apply a one-size-fits-all approach. It can be done with the person's consent, when it is required by law or when it is required to protect others. Those last ones are rare, however. By way of example, in over 30 years of medicine, I have only once had to break confidentiality to protect others. It is a rare thing to do. You always work on getting consent, explaining and working with the patient.

Mrs Dillon: Very good. Thank you.

Miss McAllister: Thank you very much for the evidence today. It has been really helpful. I have been in that circumstance. I was a carer for my elderly grandfather, who has since passed. We could not get him to seek treatment, but that was because he felt like a burden. He did not want people always coming into the house. It was probably partly stubbornness too, but a lot of it was about not wanting to be a burden to people and feeling, "They are too busy". It is difficult, because of course people have capacity. He had capacity.

From working quite a lot in that sector, I know that a lot of older people live alone but also feel, at times, that they are burden on society. At some point, a balance has to be struck. I agree that the Bill is not the way to address that, but it raises the question of whether there is also a societal issue that we need to address. Why would a person like that want to remain at home, unmedicated or without help? Obviously, the Bill is not the right way to address that, but I just wanted to make that point.

My questions are about where capacity meets learning disability. Many of us have worked with families from Muckamore Abbey Hospital, for example. A lot of the children did not have capacity, but, even though they did not have capacity, the adults — their carers, for want of a better word — were not entitled to know many things about them, which confused me. There were all sorts of issues going on with that, but it led me to wonder, in this instance, at what stage capacity overlaps with learning disability. Is that already defined in legislation, or is it decided on a case-by-case basis at the time? I know that, for the purposes of the Bill, it would be considered at the time, but, if it is just learning disability, where is the overlap? Would it always be a case-by-case decision?

Dr Green: It is not a case of patients always having capacity or always not having capacity. Capacity is dependent on what is being assessed. It is also time-dependent. In some ways, it is also dependent on the resources that can be put into explaining things. When you go through a capacity assessment with someone, you have to take great care to ensure that you have done all that you can to make sure that they have whatever control they have managed over their life. It is not that patients either have capacity or do not; it is time-dependent and decision-dependent.

Dr Mason: Absolutely. There is a huge spectrum of adults with learning difficulties or a learning disability. It is incumbent on us to make sure that we treat the individual and that we assess them at the time, depending on what we are trying to talk to them about or get a decision on. It is important that we consider that aspect. There are instances in which we have patients with learning disability who have the capacity to make some decisions about their care; they understand what they are being told and what we are asking them, and they can make a capacitous decision. It may be about something that is a little more straightforward, but it can often be challenging when you start to get into the complexities.

The big take-home is to make sure that we do not have a blanket scenario that we apply to everyone. When someone comes to see us in our consulting room, we make decisions all the time about someone's understanding of what we are telling them and of what we are suggesting or are agreeing and about whether they have capacity. Even the language that we use during normal patient interaction has to vary. We have to weigh that up all the time. Taking that into a scenario in which someone potentially lacks capacity makes it more complex, but it still is individualised.

Miss McAllister: The Bill is concerned with medical examinations, which are always time-dependent. At what stage would a medical examination be different or change, depending on whether the person has capacity? The person could refuse to be examined. A court can grant permission for a person to be examined. Is there a concern that a person's capacity could change? Is it taken into account for each medical examination, and is that sufficient? Delirium, for example, is common in older people with a urinary tract infection (UTI). They could lack capacity at the time of their examination but be back to themselves within three days.

Dr Mason: Absolutely. Again, it comes down to whether we are assessing someone under the remit of the Mental Capacity Act. That is a really good example. If, as a result of an infection or delirium, someone is unable to present themselves in a way that, you find, they have capacity, you will make best-interest decisions that may involve saying to someone, "I'm going to examine you". To be fair, the usual clinical scenario is that the person eventually consents to being examined because you work with them. It is not about forcing something on someone in any shape or form.

Let us take delirium or that sort of fluctuating capacity out of it. If you were to add to the Bill the phrase "in adults who lack capacity", that is kind of the question answered for us, because it would not then infringe or encroach on your ability to say no. If you lack a degree of capacity and come into my consulting room and I want to come at you with a stethoscope but you do not want that, I am probably not going to do that. We will make a decision to do something that meets your needs in a way that supports you, rather than forcing something on you. It is about the care in that regard. If we were able to clarify the capacity issue, the Bill would be really helpful in protecting vulnerable adults.

Miss McAllister: That is important. If clause 7 were fixed, that would not be an issue. Thank you very much.

Mr Donnelly: Much the same as Nuala, I was going to bring up the issue of fluctuating capacity. It is something that we see regularly in hospitals. I recognised your patient A: I have met her hundreds of times in various guises.

You have highlighted a very important issue that we will have to take cognisance of and steps towards resolving. It seems to go against the intentions of the Bill. The intentions are laudable and are about protecting vulnerable people, so highlighting that issue is a positive step. You also highlighted the fact that this could encourage people not to seek medical attention, which would obviously be detrimental to their health. It goes against the good nature of the Bill.

Fluctuation is the issue that I was going to raise, and consent is a fundamental freedom. I am happy enough. Thank you. I have no questions.

Dr Green: Lack of trust is contagious. If people do not trust you on one thing, they will also not trust you when it comes to other things. If they do not trust you, their relatives and friends will not trust you, which is why this could do enormous damage completely unintentionally.

The Chairperson (Mr McGuigan): We are in the process of hearing evidence from different people, and, after each session, we flag with the Department some of the issues raised. We will certainly flag this issue with the Department at the earliest opportunity and ask for a response, although we will not be engaging with the Department until towards the end of the scrutiny process. That is how we will take it forward.

Mr Chambers: Ursula, I was interested to hear your story about patient A. Recently, I was involved in a situation with a patient. I do not know whether that patient's living conditions were as bad as your patient A's living conditions, but I suspect that they were — maybe worse. That person had to finally concede to getting a surgical procedure done that was going to take them out of pain and improve their quality of life. However, that did not involve anybody coming to their home. They were just sent to the hospital and, eventually, got their surgery. The difficulties arose in the aftercare in that they did not want to let carers into their home because of the state of their home and the way that they were living. That case was maybe a case of shame or embarrassment, and, because the person was elderly, they had drifted into their living conditions.

When you gave your patient A your best clinical advice about what needed to be done and how it would improve their life and so forth, did they give you any real reasons for declining, such as having a fear of going into hospital or a fear of invasive surgery, or do you think that, in the background, the real reason was that they were either ashamed or embarrassed about their living conditions even though they let you into their house? Maybe they had a special bond with you and did not feel that you would be judgemental. In your case, is it possible that the person was embarrassed? Even though they have the capacity to make their own decisions, their decisions are guided by their living conditions, which is rather sad and frustrating for people like you.

Dr Mason: For all those patient As, all the things that you just said are reasons. Often, it is a mixture of things. One of the key roles that we have in trying to support people on a journey is helping them to explore those reasons, understand them and break down the barriers that people might face. I come back to the example that Nuala shared about her family member who felt like a burden. Patients will often feel that they are a burden on society or that they do not want to annoy family or that they have concerns. Sometimes, those concerns are relevant, real and warranted, but, at other times, they are not, and it is just a perception. You try to chip away and break that down and build up trust.

We keep coming back to the word "trust". If someone trusts you, you are much more likely to be able to support them and meet them where they are. Over time, you try to understand their reasoning and try to work with them. A lot of what we do in those circumstances is not necessarily medical. A lot of it is about understanding the social side of where people are and perhaps explaining to them how the system works and how it is there to help and support. You cannot do that in 10 or 20 minutes. You cannot even usually do it over a week or two. You build that up over months and months — sometimes even over a lifetime. Then, sometimes, you get a bit of a chink in the barrier, and they will say, "OK, I hear what you're saying. I'm going to go with that, thank you," because you have built up the trust.

I come back to saying that, if we damage that trust, those conversations do not really get the opportunity to start to grow and develop. Part of our role is often about that. You have heard me talk about continuity of care: that is a really good example of how building trust and confidentiality in a continuous relationship over time can mean the difference between someone getting support and not getting support. It is about trying to protect that more than anything.

Mr Chambers: Thank you, Ursula.

Mr McGrath: Thank you for the presentation. It has been refreshing not to hear people talking about CCTV and other issues. It has always been just the same issues that people come with. This is a different one, and it has thrown us a bit of a curveball.

In clause 2, one of the definitions of "adult at risk" is:

Is the point that you are making that they choose not to worry about their own well-being and that the definition is of being "unable to" rather than choosing not to? Would it help if that clause were tightened up? I presume that the authors of the legislation — it is a presumption that we can examine with them further — are suggesting that, if you are unable to look after your own well-being, you need somebody to do that and that, if you have the capacity to say, "I'm happy to be in the state that I'm in", you are able to look after your own well-being. It is when somebody is not able to. Is that what you would like to see tightened up?

Dr Mason: There is a difference between "unable" and "not wanting to" or "being able". I will try to give you an example. Let us think about someone who needs help with their medication. Let us say that I have a sight issue and do not know whether pills A, B or C are the ones that I need to take morning, noon or night. Often, that can be helped with aids, but let us say that I have a bit of arthritis, so it is getting more difficult and I need a carer to come in to do that. I decide, "I don't want a carer. I'm going to take my chances and take my meds as best I can". Therefore, I am unable, but I am also not consenting. I have capacity and understand the implications of that, which might be that I lose my sight, I fall or something else happens, but, as long as I understand all that and that has been explained to me and the offer of support is there and is ongoing and continuous, it is OK for me to make that decision. You might not think that that is the right thing for me to do. I am unable but also not willing. Does that explain it?

Mr McGrath: Yes. If we ask the Department about that, and it says, "Oh, no. Well, we mean by 'unable' ..." it is important that we know that we can —

Dr Mason: What you mean and what is actually read is really important.

Dr Green: The bottom line is that patients with capacity need to be removed from the Bill. By doing so, you will not remove care from those people, because the caring actions that Ursula described would still be there. We just need to make it clear that it applies only to people who do not have capacity.

Mr McGrath: I presume that it could be similar for you. If you have a patient and prescribe them medication that they need and they refuse to take it and are making that decision of their own free will, that is their choice, but that clause would capture them, and you would have to say, "No, we need to get them in because they are not able to look after themselves", and you end up with a scenario whereby you force them to take the drugs.

Dr Mason: That is why the clause, as it is written, would open a can of worms that could cause a ripple effect that is huge, beyond the whole aspect of trust. It is about how we allow people to live their lives — every one of us who has capacity. I can choose to get into my car and drive away from here at 100 mph. That is not the right thing to do, and, if I crash or hit you or hit a tree, I made that decision. However, we are on a slippery slope if we start to take away decision-making from people who have the capacity to make decisions.

Mr McGrath: I am delighted to be part of a conversation in which being pedantic is a reasonable thing to do. It is not normally what we are accused of. Thank you very much for that. I appreciate it.

Mr Robinson: During the previous session with the trusts, they spoke in detail about the pressures that they are under and the training that will be required. The British Association of Social Workers (BASW) is looking for that training to be carried out before rather than after the Bill is implemented. Do you envisage any additional pressures in an already hugely pressurised GP system, and do you envisage that any additional training will be required by GPs as the Bill is implemented?

Dr Mason: The introduction of a Bill such as this would, obviously, involve additional training and support for any front-line clinician involved in protecting people who are vulnerable. That is an important thing to highlight. Also, we need to ensure not only that GPs who will be engaging with patients understand the Bill's implications and their duty within that but that we understand how we interact with our colleagues in the system, for example our colleagues in social work in particular, because a lot of that will be engagement between social work and us and/or other clinicians across the system. There will, of course, be a training element to that because, currently, as we understand what we do, we do it within the guidance of GMC and the current legislation on consent and capacity and all of that.

I will use the example of the introduction of the Mental Capacity Act (Northern Ireland) 2016. With that, we found that there are still training gaps and deficits around the roles and responsibilities of enacting that. Therefore, it is important that, when this legislation passes, we have cognisance of what is needed to make sure that folk can hit the ground running, that they can protect the people who need to be protected and that they can make the right decisions around that. The simple answer is yes.

Mr Robinson: Dr Green has already covered the fact that there have been no discussions so far with the Department on that additional support.

The Chairperson (Mr McGuigan): Dr Mason and Dr Green, I appreciate your coming before us. We will definitely pick up on the issue and alert the Department to it.

Dr Green: We very much appreciate your listening to us. Thank you so much.

Dr Mason: Thanks for your time.