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Chamber and committees

Health and Sport Committee

Meeting date: Wednesday, September 29, 2010


Contents


Patient Rights (Scotland) Bill: Stage 1

The Convener

Item 2 is our second oral evidence session on the bill. We will hear from three panels of witnesses, the first of which is from the Law Society of Scotland. I welcome Hilary Patrick, the vice-convener of the mental health and disability sub-committee, and Katie Hay, who is a law reform officer. I thank the witnesses for their written submission.

Mary Scanlon (Highlands and Islands) (Con)

I will concentrate on mental health. I am not quite sure whether the Law Society is in favour of the bill, given that it has expressed various reservations. There is a paragraph on mental health in the Law Society’s submission, but the best submission on mental health is from the Scottish Association for Mental Health. It says that mental health is

“excluded from the treatment time guarantee”

and that mental health treatment can be delivered on an out-patient or day-patient basis, in out-patient clinics, general practitioner surgeries, day centres, and in people’s homes by community psychiatric nurses and cognitive behaviour therapists.

There seems to be a flavour of some patients having more rights than others under the bill, and it appears that patients who have mental health issues will receive no benefit at all from the bill. Would the witnesses like to voice their concerns about how the bill will not apply to mental health?

Hilary Patrick (Law Society of Scotland)

Obviously, the bill’s general principles about treatment being patient focused would apply to patients with mental health issues, but the treatment time guarantee does not appear to apply at all to such patients. I think that the Government is now saying that the treatment time guarantee could apply for child and adolescent services, but I do not really understand why. Some treatments might be available to adults on a planned basis, such as treatment for a long-standing eating disorder or an obsessive compulsive disorder.

I got very excited when I read the bill, because I thought that it might help to deal with the shortage of psychological services that has been an issue over the years. However, the treatment time guarantee cannot help with that. Looking at the situation legalistically, if a provider cannot provide the service within 12 weeks, they will just not agree the service. To be perfectly honest, because of the nature of the treatment time guarantee, if I was a health board lawyer and I knew that the health board would have problems in delivering a service or treatment, I would just try not to agree the treatment. I would say to the patient that, although they might need a hip replacement or some treatment for a mental health issue, we will not agree the treatment and propose that they get it in 12 weeks. The treatment time guarantee kicks in only when there is an agreement between the clinician and the patient.

Have I made that clear? That is just a little technical problem with the way in which the treatment time is guaranteed. Any lawyer would immediately be able to find a loophole or way around it by delaying the period in which treatment is agreed.

If someone is going to be told that although they need treatment they are not going to get it, so that the health board can comply with the legislation, that sounds like a bit more than a technical problem.

Hilary Patrick

Why would the health board not do that? That is what I would advise.

I am not disagreeing; I am just saying that it is more than a technical problem.

Hilary Patrick

If I were a health board legal officer, I would say, “Please don’t agree the treatment until you know that it can be delivered within the 12 weeks.” I would advise the board to make noises that the treatment would be a good thing and to say that it will get back to the patient. Unless I am missing something, that seems to me to be an easy way of avoiding the impact of the legislation.

Mary Scanlon

The committee did an inquiry into child and adolescent mental health and wellbeing. The treatment time guarantee is to be introduced for children under the age of 16 but, as far as I am aware—there are other experts here—there is no treatment time guarantee and no waiting time target for patients who have mental health issues.

Hilary Patrick

Yes. I suppose that the question is why that group of patients is being discriminated against.

Mary Scanlon

The point is that the Patient Rights (Scotland) Bill brings no more rights to mental health patients. From what you have said, and from what the convener has picked up, am I right in saying that because a mental health patient could get antidepressants or cognitive behavioural therapy by telephone from NHS 24, inappropriate treatments could be given so that targets can be met?

Hilary Patrick

Cognitive behavioural therapy is a good example. Everyone might agree that I need it and that it could help with my depression, but there is no urgency about it. Why could a planned intervention like that not fall within the treatment time guarantee? Is it because it is not being given to an in-patient, and if not, why not? Why is that not discriminatory? Why are adults with mental health issues not being given those rights? It appears to be slightly discriminatory.

I was coming to that point. If the Patient Rights (Scotland) Bill is for all patients, but it excludes mental health patients, is it discriminating against that patient group in law?

Hilary Patrick

I think that I would have to come back to you on the question whether the Government was discriminating. I would have to look again at the Equality Act 2010, but the provision clearly appears to be discriminatory under the normal meaning of the word.

Mary Scanlon

Most patients will have rights but certain patient groups—such as those with fertility problems, for which there are no waiting time targets, and those with mental health issues—will be excluded. Is it fair to say that, according to the bill, some patients will have rights and others will have none?

Hilary Patrick

Yes.

Mary Scanlon

Concerns have been raised about the requirement for mental health patients to have a dual diagnosis for drug and alcohol treatment. Given the health improvement, efficiency, access and treatment—or HEAT—target for drug addiction services, how can they achieve the HEAT target treatment time guarantee while being excluded from the mental health one? Do you understand what I am saying? Those patients need two types of treatment, but only one comes under the guarantee.

Hilary Patrick

I wonder whether it would be fair to suggest that part of the problem is putting such a guarantee in legislation and therefore fixing it in stone. It could be argued that it would be more sensible for the NHS and the Government to deal with treatment time guarantees, waiting time targets, HEAT targets and so on as priorities change.

Mary Scanlon

Reading the British Medical Association submission last night, I noted its comment that waiting time targets distort clinical priorities. Is it fair to say that to make the bill non-discriminatory and to ensure that patients have equal rights every treatment would require to be underpinned by a treatment time guarantee?

Hilary Patrick

I do not know whether I would go quite as far as that, but I think that it is invidious not to include mental health patients in the treatment time guarantee. That said, I question the value of that particular guarantee anyway.

That was very clear.

Ross Finnie (West of Scotland) (LD)

I want to pursue the introductory comments in your submission about the bill’s general principles and, in particular, enforceability. The committee is dealing with two quite separate issues. You think that the bill would be improved if its provisions were enforceable. I can understand that approach—having a lawyer at every bedside is bound to be good for the Law Society—but surely it is not the most logical way of addressing the problem.

However, the committee faces a fundamental difficulty here. This is not really a matter for the Law Society, but I have no doubt that patients’ rights would be improved enormously if the work that the Government has done in marshalling them cohesively and coherently were to be issued as a clear direction from the minister, in terms of section 1 of the National Health Services (Scotland) Act 1978, of what she and patients should expect and of what patients should get from the service.

I do not think that the bill really makes sense. For a start, I am not at all clear why these particular rights should be enshrined in a bill, particularly not one that includes section 18, which renders the whole thing a complete nonsense as law. Do you really think that the bill’s provisions would be improved if they were made enforceable or, given that more than 90 per cent of those who responded to the consultation said that they did not want to have recourse to the law, would it have made more sense for the Government to produce a document setting out patients’ rights instead of putting them in a bill?

09:45

Hilary Patrick

First, Katie Hay will make a few brief comments about where our committee is coming from on this matter.

Katie Hay (Law Society of Scotland)

I would like to set our appearance this morning in some sort of context. As you know, the Law Society is a statutory body with the dual function of promoting the profession’s interests as well as promoting the interests of the public in relation to the profession. Our role with regard to law reform is very much part of the latter function. Our law reform department has a number of committees—Hilary Patrick, for example, is vice-convener of our mental health and disability sub-committee—and those who sit on them give their time voluntarily with the sole purpose of suggesting how law can be improved to clients’ benefit.

Hilary Patrick

The point is that, on this occasion, we are not trying to drum up business for the legal profession.

I think that Mr Finnie was making a light comment. You must not feel wounded by it.

Ross Finnie

Maybe you should also have a sub-committee for understanding humour. That might be more appropriate.

I accept that you are not here to promote lawyers or ensure that they get more business, so let us not attempt humour or have any more silly comments and just get down to business and deal with the facts. The nub of the matter is this: if you are interested in promoting good law, do you think that it is good law to have a purported bill that gives people rights but does not set out any way of enforcing them?

Hilary Patrick

I think—

Yes or no would do.

Hilary Patrick

Under the bill, someone can still go to court and get what is known as a declarator, or statement from the court, that a health board is breaching the legislation and therefore acting illegally. That will be a charter for lawyers. If a health board—

Is that good law?

Hilary Patrick

I do not think that it is particularly good law. We could have expanded our response to make it clear that either you have something that is enforceable and meaningful or you do not have this legislation at all. To be honest, I feel that if the provisions in the bill are not meaningful—I have suggested as much in relation to the treatment time guarantee—and given that the rest of the bill is made up of principles that are hedged with woolly phrases such as “have regard to”, “aim to” and so on, I find it difficult to see how they could be enforced.

Before the meeting, I made a list of about 17 rights that patients already have under law, under statute, under common law or under national health service practice. Some of them are actually much tougher than the rights that are set out in the bill, including—

Before you list them all, I wonder whether it might be useful if you just give us a number of examples and then provide us with the list in writing.

Hilary Patrick

I will do so.

There are, for example, rights to confidentiality; rights to access to records and to advocacy; human rights, which the bill does not mention; and common-law rights about information. All those rights are tougher than what is set out in the bill. The bill, for example, says that health boards should “have regard to” confidentiality. Actually, under the Data Protection Act 1998 and their own codes of conduct, they have to respect confidentiality.

The bill will not weaken the general law, but what will it add to it other than information about changing the complaints system? Law is not needed to do that; the NHS has its own complaints system. The question for the committee is: what is the benefit of enshrining such a system in legislation? I remain to be convinced that the bill will add anything.

Ross Finnie

Why try to encapsulate all that in a bill and create a law that, apart from providing recourse to judicial review, which you might have in other circumstances anyway, could circumscribe your course of action by including section 18? Most people who were consulted on the matter said that they did not want a right to law, which begs the question why one is trying to introduce a law. However, that is a matter for the Cabinet Secretary for Health and Wellbeing.

From a legal point of view, if instead of producing this bill the Government had sought to draw together all the existing rights—indeed, it might have thought of additional rights or of different ways of expressing them—and published them in a single document, with no particular legal status save only that the cabinet secretary might issue a general direction for how health boards and other health bodies were to act in respect of the general principles of section 1 of the 1978 act, would that have diminished patients’ current rights and accesses?

Hilary Patrick

Guidance or even a direction could have been issued to the NHS—power exists to give directions to the NHS. I was going to say that the one change under the Patient Rights (Scotland) Bill would be that someone could still go to court to get a declaration that the health board had behaved illegally. However, if ministers issued guidance to the NHS, one could still go to court and judicial review to say that the health board had not acted in accordance with the guidance.

No; I do not think that enshrining those rights in primary legislation increases patient rights, other than in relation to the treatment time guarantee, which I do not see as a powerful tool anyway.

Dr Richard Simpson (Mid Scotland and Fife) (Lab)

We have an ombudsman system and this Parliament has established a number of ombudsmen to try to improve people’s rights. The Labour-Liberal coalition Government and the SNP Government have endeavoured to improve patient rights in general, and I think that they have improved in the past decade. Would it be better to have a patients charter, as the English have? I do not know whether you have looked at the charter, but it makes a clear declaration of something like 35 rights that are referenced to the legal underpinnings of those rights.

Would it have helped to have a simple measure that, for example, required the health boards to respond to any report of the ombudsman by laying something before Parliament to indicate that they had complied with the decisions of the ombudsman? Such decisions are only a recommendation; as I understand it, the ombudsman currently has no powers to direct a health board and I am not saying that they should. If a report was laid before Parliament, at least that would provide an opportunity for debate if the board refused to—

Hilary Patrick

I might have this wrong, but I thought that if health boards did not comply with the ombudsman’s report, he or she could lay a report before the Parliament. Although it is always said that the ombudsman does not have powers, I thought that it was quite a sanction that he or she could lay such a report before Parliament.

The ombudsman makes reference to those issues in its annual report, but I have not been aware of any—

Instead of having a general discussion, we will clarify that matter before the end of the meeting.

Dr Simpson

My question stands regarding the patients charter. If the National Institute for Health and Clinical Excellence issues guidance to a health board on a question of medication with a particular drug, under the English charter the patient is entitled to that drug and the health board must supply it, if that is clinically appropriate. There are no such rights in Scotland, and there will be no such rights in the bill.

Hilary Patrick

If the patient in such a situation in Scotland came to me, I might well challenge the health board. Judicial review would be available if our equivalent of NICE had recommended the treatment and the health board had disregarded the recommendation. There could be legal challenges, although I do not know whether legal challenges would be the way to go. Personally, I prefer to address complaints through ombudspeople rather than using litigation in the health service.

Dr Simpson

To return to Ross Finnie’s point, the Government could issue a direction that if a medication is approved by the Scottish Medicines Consortium, it should have to be delivered, if it is clinically appropriate.

Section 18 states:

“Nothing in this Act prejudices—

(a) the exercise of clinical judgement”.

However, if the doctor’s clinical judgment is that the patient should have the medication and the health board disagrees with the medicine being prescribed, that would interfere with clinical judgement, so the law seems to be a complete nonsense. Am I misunderstanding the situation?

Hilary Patrick

No, I do not think that you are.

Dr Simpson

My main question is about people with disability and, in particular, sensory problems. We have heard today about a further report on the provision of proper information whereby people who are blind are able to use the health service effectively.

The Royal National Institute of Blind People Scotland’s submission states:

“One quarter of our respondents have to rely on a friend or relative to make telephone appointments ... While 46% of respondents made appointments over the phone themselves, one-third said they had difficulties communicating with staff”

and so on. The Royal National Institute for Deaf People Scotland’s research identified a list of concerns.

Do you have any comments on people who are not only blind but deaf and have other sensory deprivations, such as the 5,000 people in Scotland who are deafblind? Does the bill confer upon them any fresh rights? Does it ensure that the progress that has undoubtedly been made is followed through to a point that gives them a legal right to receive the information that they need, in the form in which they need it?

Hilary Patrick

I do not see what new rights the bill gives to those people. Are you talking mainly about communication issues?

Yes.

Hilary Patrick

One of the principles in the bill is about the provision of information and support and encouraging the person to participate, but patients have far wider rights under the Equality Act 2010 in respect of reasonable adjustments and non-discrimination. As I said previously, under that act it is not just about requiring people to “have regard to” those principles, because health boards have to make reasonable adjustments and must not discriminate. One of my concerns is that the bill’s principles almost undermine the much tougher law that already exists.

That answers one of my main concerns about the bill. My other concern—

The Convener

I appreciate what you have said about existing rights and I am not disputing that. However, section 16(e) refers to

“publicising the patient advice and support service in such a manner as is likely to bring it to the attention of patients”.

Would that not be of assistance in respect of the blind and the partially sighted?

Hilary Patrick

Yes, it would, but masses has been done under the Disability Discrimination Act 1995 and more will be done under the Equality Act 2010. I do not have any particular problem with the bill’s provisions on the issue. All I am saying is that, if one asks, “Does it add anything?” the answer is no, because this is already happening and people already have a public equality duty to ensure that people with disabilities are not discriminated against.

10:00

The Convener

Playing devil’s advocate, however, I point out that it is not working at the moment. The people whom Richard Simpson has spoken about do not know their rights and do not get prescriptions in the appropriate manner—mind you, I cannot read a prescription either. They are not getting the medical advice or being told about stuff—they are already in the position of not being communicated with. Would that provision not help to get the information provided in a way that they can understand it?

Hilary Patrick

Part of my problem as a lawyer is the fact that people do not know the law.

We are talking about helping them to know the law.

Katie Hay

The provision would not hinder that, necessarily. However, the fact that the wording is that a patient rights officer “may undertake” does not strengthen the position.

Dr Simpson

The word “may” is the problem. One thing that I have learned in seven years as an MSP is that these small words have a significant effect.

I want to return to the question of exclusions. We are being asked to consider a bill that entrenches discriminatory rights in law. That is one of our main concerns. The list of exclusions is: assisted conception; obstetrics; complementary and alternative medicine; organ transplant; direct access to services such as X-rays; diagnostic tests; out-patient treatments; certain national specialist services; specialist services that are delivered in England and used by Scottish patients—which I really do not understand; and alcohol and drug misuse services.

I will focus on the last of those exclusions. I draw attention to my being a member of the Royal College of Psychiatrists and having been a specialist in addictions. With the excellent HEAT targets that are being proposed, which we are all signing up to, we are already going to discriminate further between drug services and alcohol services. At the moment, even with the additional money that the Government is investing—for which I give it considerable credit; it has done a very good job in putting in the extra £40 million—there are still long waiting times for specialist alcohol treatments, which will be specifically excluded from the treatment time guarantee as I understand it.

Hilary Patrick

I am sorry to repeat what I said. My concern is that the treatment time guarantee will not help to challenge waiting times because it is an individual relationship between the clinician and the patient. There is no obligation on a clinician to agree a treatment within a certain time limit. If the treatment is not available, it will not be offered and accepted in that sort of contract and the time will run.

I am afraid that I cannot get very excited about the treatment time guarantee. I presume that it is mainly a case of the doctor saying to me, “You need a hip replacement, Hilary,” me saying, “Yes,” and the time running from that point. The doctor will do that only if he or she knows that I can have the operation within 12 weeks. Therefore, as I said, I do not see the treatment time guarantee as being a tool for tackling waiting lists. For me, one of the issues is psychological services, and those will not be included. I suggest that it is not a particularly effective tool.

That is very helpful. Thank you.

Helen Eadie (Dunfermline East) (Lab)

Let us return to the point about the Scottish Public Services Ombudsman. I believe that all the reports are published on the website. I am interested in the fact that you think that that is a sanction. Some parliamentarians read the reports but others do not; therefore, how do you think that it would be a sanction?

Hilary Patrick

I do not think that it is a sanction; I just think that it is an effective remedy.

Why do you think that?

Hilary Patrick

Using the ombudsman is free and does not require much work by the patient, whereas going to lawyers costs a great deal of money. Also, the ombudsman is familiar with and has an understanding of NHS practice. Often, complaints are not about breaches of legal rights but about poor practice, rudeness and delays. As you know, the test that the ombudsman uses relates to maladministration—bad management. That is more common than some dramatic breach of legal rights.

You used the word “sanction” when replying to an earlier question. Given that the general thrust of our discussions has been that there are no enforceable rights under the bill, was your use of that word misplaced?

Hilary Patrick

My understanding is that the ombudsman makes a recommendation to the health board to pay compensation to someone or to apologise. Generally, most health boards or others criticised by the ombudsman comply with his or her recommendations. I understand that, if they do not, the ombudsman can lay a report—not the general report—before the Parliament. I thought that it would be a sanction for Lothian NHS Board, for example, if a report were laid before Parliament describing the awful thing that had happened, setting out the ombudsman’s recommendations and indicating that the board was refusing to act. That is not a legal sanction, but the Parliament would ask questions and the board would have to—

Forgive me, but I want to move on, as we have exhausted the issue. We will get a note on whether an ombudsman’s report can be laid before Parliament. I imagine that the press, too, will pick up reports and use them.

Helen Eadie

My other question is about evidence that the committee has received. Some people believe that, if the rights for which the bill provides are enshrined in law, patients will come to believe that they are their only rights. What is your view on that issue?

Hilary Patrick

I believe strongly that that is the case. I was making the point that people have much stronger rights. People will take the view that the rights for which the bill provides are their only rights because, under section 15(4), the patient advice and support service, with its new duties, will be able to give patients advice only on their rights under the bill, rather than on all their rights. That is a clear weakness; the service should be able to give advice on patients’ other rights. It is a great concern that patients will get the message that they have no other rights.

Mary Scanlon

I have a brief supplementary on the back of Richard Simpson’s question. The convener pointed to section 16(e), on publicising the patient advice and support service. However, section 1(2) states that health care is to

“be patient focused: that is to say, anything done in relation to the patient must take into account the patient’s needs”.

If the bill is passed, what additional rights will a patient have on the basis of that provision?

Hilary Patrick

I was going to say, “You tell me.”

The Convener

That has answered the question.

We have exhausted the issue of enforceability. If the committee is content, I will move on to the next panel. I thank our witnesses.

10:08 Meeting suspended.

10:10 On resuming—

The Convener

The committee has a heavy agenda this morning, so I am racing on to the second panel of witnesses, who represent health care professionals. They sat through the previous evidence session, which was useful for us and for them. The witnesses are Dr Sally Winning, who is deputy chair of the British Medical Association Scotland; Theresa Fyffe, who is director of the Royal College of Nursing Scotland; and Dr Bill Mathewson of the Royal College of General Practitioners Scotland. Thank you for your written evidence. We move straight to questions.

Ross Finnie

Good morning. You may or may not have heard the evidence that was given in the previous session. In your written evidence, all of you express grave reservations about whether legislation is the right way to articulate and lay out patient rights. I put it to a previous witness from the Law Society of Scotland that, although it is clearly desirable that we have a body of text that sets out patients’ rights, that might be better expressed by publishing those rights and the cabinet secretary issuing them to all relevant health bodies as a direction under the National Health Service (Scotland) Act 1978, given that the bill gives people only a limited right of judicial review and section 18 effectively nullifies all other remedies. Do you share the view that expressing rights in that way would be preferable to creating a piece of legislation that appears not to be enforceable? In my opinion, it is doubtful whether we would want it to be enforceable.

Theresa Fyffe (Royal College of Nursing Scotland)

We agree absolutely that there is a need to do something about the principles of rights for patients. We are not against that. The Government is seeking, through the bill, to address a problem. There is a need for better co-ordination and to make it much clearer to patients and others that patients have rights and that, perhaps, they have not been enabled to exercise those rights. However, it is clear to us that the bill will not deliver that. As the previous evidence showed, some rights are included and some are not. That would be confusing for the public, who are already confused about the fact that they have rights but do not necessarily know how to enact them. We should do something about that. There is a need to enshrine patient rights, but we do not believe that legislation is the way forward.

Dr Sally Winning (British Medical Association Scotland)

The BMA agrees with that. If we as clinicians and politicians have failed to communicate patient rights effectively, we need to address that and we should do so within the doctor-patient relationship. We could do it by publishing a charter, so that patients feel more empowered to address patient rights issues within the context of an on-going episode of care.

Dr Bill Mathewson (Royal College of General Practitioners Scotland)

I agree with my colleagues. Many of the patient rights that are mentioned in the bill are included in codes of practice, especially those that are issued by the General Medical Council, which provides good clinical practice guidance.

You say that there is a problem but that the bill may not be the solution. I do not understand why the problem has not been addressed for a long time.

10:15

Dr Mathewson

Patient rights are recognised in everyday practice by general practitioners.

They are not, however, recognised by patients and that is the issue. I am not a stupid lady, but I do not know what all my rights are.

Theresa Fyffe

We have an NHS booklet and we have other means by which people can find out about their rights, but it is not clear that patients or the public know how to use them, so it is not clear that those rights are being enabled. It is about communication.

I agree entirely with my colleague that patients’ rights may be clear to particular professionals, but that sometimes professionals do not spell things out. From the perspective of my profession, I know that professionals might not make the situation as clear as they could do. Something is not working for patients, and that is a concern. I believe that we need to look at what is there and ask why it is not working. We must work with patients to find out what is not working for them. Something is not right and I am concerned that patients think that they have rights but do not know how to have them met.

Dr Winning

The waiting list initiative is perhaps an example of how a patient’s perception of what their rights are has become distorted. Patients now tend to look at quantitative measures of rights, such as that they must be seen within X amount of time, but there are layers and layers of rights beneath that, including rights to do with how they are treated. Patients have made complaints on, for example, being treated with dignity or being dealt with in such a way that they understand the language that is used. Looking at more easily measurable things such as treatment time guarantees and waiting list initiatives can sometimes give patients the wrong impression about what their rights are. We need to shift away from numbers to quality of care. The excellent quality strategy that is currently being implemented will tackle many of those issues.

Mary Scanlon

I am still struggling to understand how the bill will increase patients’ rights. The BMA says on page 3 of its submission:

“we are unclear what this legislation adds.”

I am getting to the stage of wondering just how bad the bill might be for patients’ rights. Jim Martin, the Scottish Public Services Ombudsman, said that he thought that it would make things worse.

In its submission, the RCN says:

“the Bill would unbalance relationships and work against the development of a mutual NHS”

and

“could serve to increase inequalities in health care”.

It appears that the bill will not only not add value, but will make things significantly worse. I ask Theresa Fyffe to explain those two points. To say that the bill “could ... increase inequalities” is a serious claim to make.

Theresa Fyffe

As far as relationships are concerned, we have worked extremely hard on the concept of mutuality that the Government brought in, and we fully understand the importance of having a partnership that involves patients, staff and all those who seek to provide a service. We are looking for a role between patient and professional that is complementary, not one that increases tension.

The bill suggests that patients have rights, but it does not strengthen patient responsibilities. As someone who has been a clinician, I know that that makes it difficult for clinicians, when they know that a particular course of action is the best judgment in terms of treatment or intervention, to say that that is the best judgment. I am talking about situations in which there is risk. I am unhappy to see the absence of mutuality between patients and professionals.

There is a lot of evidence from America that I could send to the committee about the change in the relationship between doctor and patient. We looked at that extensively, because a lot of work has been done there to try to redress that imbalance, and to get back to the respectful relationship between doctor and patient that Dr Winning mentioned. I would support that from any other health care professional.

My second point about inequality was addressed in the previous debate. On setting certain things out in and excluding certain things from bills, our experience of any form of process that goes to the NHS is that people will, quite understandably, tackle what they need to do. There is a lot to be done. When a person is considering a process, they will say, “This is what I need to do to meet that.” That is why we have said that we are not against targets but are concerned when targets skew people towards meeting them and it is forgotten that a loss of dignity, for example, can be a consequence. That is why we have called for dignity proofing of policy. It is a concern that, when one is dealing with a very big board that must address everything that it meets, inequality could become an issue for groups that are not included. The question is, how does what has been included stand the test of time?

That takes us to issues such as mental health.

Theresa Fyffe

Mental health is a major concern. Again, I agree with my colleague Dr Winning. It can be said that things are easy when there are quantitative measures. However, I have spent a lot of time working with patient groups, and have said to them, “You want to have your target, but what about the experience? Did you feel that you got what you needed? Did the experience match what you wanted and leave you feeling that you had left the care experience in the best way?” That is important. Outcomes are about what happens afterwards, not the treatment.

Dr Winning

I will illustrate that with fairly extreme examples. If I were an orthopaedic surgeon who wanted to replace an elderly lady’s hip and I absolutely had to meet a target, she might have to go on to someone else’s theatre list. That happens in order to achieve waiting list targets. Surgeons have unknown patients to operate on appearing on their lists. I would want to have a good relationship with my patient, and perhaps I would wait a little bit longer so that she could reduce her body mass index to make the operation safer and I could ensure that she fully understood the procedure, or perhaps I would bring forward the operation or delay it a little until her daughter could arrive from England to be with her during the recuperation phase. A target-driven culture might be to the detriment of good-quality patient care.

That is helpful. Thank you.

I am finding it difficult to hear Dr Winning, as there is a big buzz from the sound system. I wonder whether there is a problem with her microphone.

Dr Winning

Shall I try another seat?

Dr Simpson

Would that be possible? I have a slight hearing problem, and am finding it difficult to hear you.

All our witnesses are from organisations that have United Kingdom counterparts, and I am interested in what they have done to compare the bill with the English NHS constitution. That constitution is not, of course, enshrined in a particular act, but it underpins many common law, statutory and other rights in England.

Earlier, I used the example of a clinician recognising that a medicine had been approved by the Scottish Medicines Consortium and recommending it for a particular patient’s use. As I understand it, under the bill, the clinician will have no rights in that regard if the health board determined that that medicine should not be used. That is just one example.

It seems to me that, if we are going to pass a bill in Scotland, the committee should be convinced that it will take us ahead of what is happening in England, as we were with the Adults with Incapacity (Scotland) Act 2000 and the Mental Health (Care and Treatment) (Scotland) Act 2003. Those acts enshrined new rights in their principles that protected patients and took us ahead of the rest of the UK. Will you comment on the additional rights in the bill? What will it do for Scots patients that will be at least equal to, and preferably better than, what happens in England? If the answer is nothing, just say that.

Theresa Fyffe

I think that the answer to that question is nothing.

Dr Mathewson

I agree.

Dr Winning

So do I.

There we are. Those were short answers to a long question. That is not bad.

Michael Matheson (Falkirk West) (SNP)

It is clear from your submissions that all the professional bodies that you represent are in favour of patients’ rights, that patients already have certain rights, and that you have codes of practice and so on that help to inform professionals in their practice about patients’ rights. Theresa Fyffe commented that she believes that patients’ rights should be enshrined, but not necessarily in legislation. I am not clear how they could be enshrined by any other means. Given that you are in favour of patients’ rights, what do you believe we should be doing, other than in legislation, to ensure that patients can exercise their rights more effectively?

Theresa Fyffe

There are a number of solutions. I believe that we should look at the constitution that has been developed in England. There are elements within it that would perhaps need consideration for Scotland, although I would rather not go into that today because I have not brought it with me. However, as a process, it has brought rights together in one place and made them much more accessible. That is what I meant by enshrining patients’ rights. The NHS constitution has made the rights clear to people.

We have also called on the Government to dignity proof its policy. That is about dignity, equality and respect. The Government should look at its policies and ask how they enact dignity. As my colleague Sally Winning does, I believe that the equality strategy will go a long way towards supporting that process.

You will probably be aware from my written evidence that I went to Norway to find out and understand what has been done there. What concerned me was that those who seemed to know the most about patients’ rights were the more articulate and able people. I am concerned that, if we do not do something, the very people whom we want to understand their rights and express them will be those who are least able to do so. I am not just talking about mental health in that regard; I am talking about enabling a range of people to access their rights.

I believe that there is work to be done. The next step should be to consider what we can do to ensure that we enable people in the way that I described. We have not done that thinking yet—at the moment, we are just responding to the bill—but I want my organisation to commit to considering what could work and what could make things better.

Do any of the other professional bodies want to comment?

Please indicate to the chair if you want to comment. I call Dr Mathewson.

Dr Mathewson

The Royal College of General Practitioners Scotland would agree with Theresa Fyffe. We welcome clarification and amplification of patients’ rights, but not codification—or whatever the appropriate word is—in legislation. There is a need to make patients more aware of their rights. There is also an enormous burden on general medical practitioners to act appropriately—to indulge in mutuality with the patient, to exchange information, to respect the patient, to encourage them to take up services, and to explain things. All of that is already part and parcel of everyday general practice, as it should be. It is expected and, as I have said before, it is in the strong guidance that is given by the General Medical Council. All those rights and privileges are inherent in the codes of practice that already exist, but we welcome the statement of them, the strong support for and amplification of them, and some method of ensuring that patients become more aware of those rights.

And the BMA?

Dr Winning

I agree with everything that my colleagues have said. If we are looking for what the solutions might be, I think that the independent advice and support service is exactly that. It is independent and it is holistic as it covers all sorts of issues such as welfare. If patients’ rights were laid out clearly, there are facilities and places where patients can go to get that information in an easily understandable and digestible format.

Do you have another question, Michael?

Michael Matheson

Yes. I have a couple of points, if you do not mind.

My difficulty in the debate about rights is what lies behind the word “rights”. It is all very well to say that patients have rights, but if the health service in some way fails to meet my rights, what form of recourse do I have to enforce those rights?

10:30

My problem with the bill is the lack of enforceability when it comes to rights. When someone talks about me as an individual having a right, I expect some sort of backbone to that right to enable me to pursue it in the way that I think is appropriate, which, if necessary, should include legal recourse, for example under the European convention on human rights. I have heard a lot of talk about a greater focus on informing people about what their rights might be, but I feel that there is no spine behind the word “right” when it is applied to certain circumstances. Do you oppose in principle the idea of having any form of legally enforceable rights in relation to provision within the NHS, over and above the rights that can be pursued through legal recourse at the moment?

Dr Mathewson

There are two aspects to that. One is that legally enforceable rights would inevitably alter in some way the atmosphere or the doctor-patient relationship in the consultation, despite people’s best intentions, because there would be awareness that the consultation was on a legal footing.

Secondly, I understand that rights imply legal recourse or sanctions. There are perhaps three levels at which the patient can clarify whether the rights that they are due are being exercised. The first level is simply to have a discussion—to make a complaint or a statement of concern that their rights are not being respected within the primary care team. The patient should be able to do that. If they do not feel that they can do it on their own, they can do it with local help.

The second level is a complaints procedure that will entertain any complaint that is made against general practitioners, which is the proper way to seek redress, explanation and remedy, although not financial remedy.

At the third level, if the patient feels that in any breach of their rights they have suffered some loss or damage, there is recourse to the civil law to seek redress formally. There are levels of redress or explanation. The best way forward, at least initially, is to look for explanations and apologies at the point at which the care is being delivered, or not being delivered.

Have we exhausted that issue?

I am keen to hear whether the Royal College of General Practitioners Scotland is opposed in principle to the idea of enshrining rights in law.

Dr Mathewson

RCGP Scotland is opposed in principle to that.

Theresa Fyffe

The RCN Scotland is also opposed in principle to that. As an organisation we are working very hard around the no-fault compensation scheme; I think that recommendations are coming out in late October. It is becoming clear that there is work to be done around the complaints system to redress the balance. That is why we have been committed to that work. For us, the consequences, which Mr Finnie addressed earlier, of having legal redress would not be in the best interests of patients or others.

Dr Winning

The BMA supports the principle of patient rights, but we defer to the views of our legal colleagues, who do not think that the bill will add anything to the rights that already exist.

The bill will not add or take away; it is neutral.

Dr Winning

Yes.

Helen Eadie

I get a sense from this morning’s discussions and from other discussions that we have had in the committee that everyone wants change that will enhance patients’ rights. The question is, how do we do that? We politicians can give you chapter and verse about cases of injustice about which we get enraged on behalf of our constituents. Some of those cases result in death. How can you ever bring back a loved one for someone who has been bereaved in that way?

When you believe passionately, as some of us do, that there needs to be change, one of the first things that you do is to sit around a table and identify who your key allies and other stakeholders are, and who shares your objectives. A lot of thinking is being done in various organisations, but has anyone ever pulled together everyone for a discussion about how we can make things better for patients?

Theresa Fyffe

That is the challenge that we now face. The Government has opened up a good debate about why patients rights are as they are and how patients feel.

We recently ran a workshop around the co-production concept that is coming out of the Health Foundation. I am not keen on the title of the concept, but we are interested in how it might enable new ways of partnership working between patients and professionals. We are only in the preliminary stages of that work, but I believe that such an initiative might help in relation to what we are discussing.

As I said earlier, if the bill does not go through, we should be considering what we need to do. As an organisation, we would be committed to that.

Helen Eadie

In a sense, we are all saying with hindsight that that should be the way forward. However, has it ever been done before? Did the Government call you to meetings to get your views and those of patients and everyone else in the medical profession before it went to the drawing board to prepare its consultation document? Was there an attempt to get a consensus on the appropriate way forward before the Government came to the Parliament? If that had happened, we could have had a more rounded debate.

Theresa Fyffe

That has been happening around various areas of work, such as the work that has been done on no-fault compensation. We have been at the table in relation to some issues and have been very committed to that work. We have had extensive discussions with the Government on the dignity work and our views have been listened to and well received. That is the way it has been happening, rather than—

So, it has been a fragmented and piecemeal approach, rather than there being a round-table discussion with all the parties involved.

Theresa Fyffe

Perhaps.

Ian McKee (Lothians) (SNP)

I have three questions. First, I gather from everyone’s submissions that you are all concerned about the possible distortions that could arise from the 12-week waiting time guarantee—for example, there is a worry that ensuring that someone gets an operation within 12 weeks might mean that the operation of someone who needs it more urgently is delayed. Is that correct?

I think that that point was made by previous witnesses, but members of this panel might want to comment.

Dr Winning

I agree. That is correct.

Ian McKee

Section 8(3)(a) deals with the arrangements that apply when a health board has exceeded the 12-week treatment time. It says that the health board

“must not give priority to the start of any treatment where such prioritisation would, in the Health Board’s opinion, be detrimental to another patient with a greater clinical need for treatment”.

Would it be better to include that phrase earlier in the bill—perhaps replacing “Health Board” with “treating clinician”—so that it appeared in the section that deals with the meeting of the 12-week guarantee rather than its breach?

Dr Mathewson

Yes, I think that that would be better. The statement should be given prominent consideration in the bill because, without it, individual clinicians, who might be reviewing patients and changing the clinical position to make appropriate actions, would have no latitude. We in the college have discussed the issue; no doubt you will have spoken to secondary care colleagues, who might also have a view on the matter.

Ian McKee

I share Theresa Fyffe’s enthusiasm for a concept of mutuality in the health service, but how would that work in practice? What if the bill were to contain responsibilities for patients? Having worked in primary care, I am very well aware that some of the people in greatest need are those who, at first sight, do not seem to meet their responsibilities. Instead of mutuality being some nice, happy concept, I wonder whether introducing such responsibilities would in practice simply increase health inequalities by coming down heavily on the very people whose health needs might be greatest, even if they were not so good at co-operating with the health service.

Theresa Fyffe

That is the conundrum. Once you begin to talk about balancing rights and responsibilities, you get into that very dilemma. As set out in the schedule, the 12th principle is:

“Patients are encouraged to treat any person involved in the delivery of health care with dignity and respect.”

In our written submission, we say that we found the choice of words to be interesting. I would have thought that, if the aim was mutuality, the phrase would have been “are expected” rather than “are encouraged”. However, this is where I struggle with what the bill is trying to do. I cannot tell you what the other solutions might be, because that is the issue that we need to examine and it will be a very tough challenge to get rights and responsibilities right at the same time.

Dr Mathewson

I agree. As we all know, there has been enormous movement in the area of rights and responsibilities over the past 10 or 20 years, and the very fact that we are debating it this morning represents another step forward. Those who are less likely to be able to speak for themselves are likely to be more disadvantaged in the mutual aspects of the doctor-patient relationship.

As I say, things are moving on. There will be no big bang; the process will be gradual—though getting faster, I hope—with the doctor-patient relationship improving and rights and responsibilities being recognised and acted on. However, this is a continuation of an enormous change that has been taking place slowly but surely over the past 10 to 15 years.

You agree, though, that setting out in a bill the requirement for people to keep their appointments and so on might have an effect contrary to improving the country’s health.

Dr Mathewson

Yes. Setting out minutiae such as that—well, perhaps not “minutiae”; it is an important element—could be counterproductive.

My third—and last—question, convener—

I have been counting. It seems more than three, but I am sure you are right.

Ian McKee

It is three.

We know that many more procedures are being carried out totally in primary care and that general practitioners and people who work in primary care can do many more things than they used to be able to. In a previous evidence session, we were told that primary care has a responsibility under the health board for such procedures. If a GP agreed with a patient about removing a cyst or something like that, would the health board have to monitor that? How would it work?

Dr Mathewson

As it works at the moment. There would be an exchange of information between the patient and doctor; an understanding would be reached of the problem and the options for dealing with it; and information would be disclosed about possible outcomes and follow-up. As you say, that is an increasing part of primary care and the extended primary care team’s activities; indeed, it has become an even greater part, with long-term conditions being looked after by other primary care colleagues.

I do not know whether the health board plays a particular monitoring role in that respect. There are procedures in place for people to make complaints and express dissatisfaction. Professional monitoring, however, is another matter, and there are routes for complaining about professional standards that would not necessarily involve the health board playing Big Brother. It already has an insight into practice through the quality outcomes framework procedures, which is more of an accounting mechanism than a quality one.

10:45

Ian McKee

But the bill places a duty on health boards to monitor each treatment time guarantee and to make the necessary arrangements for the procedure to happen somewhere else if it is not going to happen within 12 weeks. Surely, if that is a health board responsibility, it will involve more bureaucracy than simply leaving the matter to the GP. What if someone says, “I’ve been waiting 15 weeks,” and the health board has not known anything about it?

Dr Mathewson

I am sorry—I think that I might have misunderstood your question. Are we talking about procedures being carried out in primary care or about GPs’ role in monitoring the treatment time guarantee?

Ian McKee

I am sorry if I am not making myself clear. I am talking about a treatment such as a minor surgical procedure that is carried out in primary care, which will now be subject to a 12-week waiting time guarantee if the GP and the patient agree to the treatment. As I understand it, that treatment will be treated in exactly the same way as procedures carried out in hospital. Under the bill, the health board has an obligation to monitor the treatment time guarantee and ensure that, if it looks as if it might not be met, it is met elsewhere. Will that not involve more bureaucracy?

Dr Mathewson

Yes. If the bill is enacted, there will have to be a mechanism to allow notification of the procedure to be carried out and its completion. However, in most general practices it is likely that patients will not have to wait anywhere near 12 weeks for a minor surgical procedure, which often can be done, if not immediately, then fairly quickly.

But you are aware of all that.

Dr Mathewson

Yes.

And you have discussed it with the Government.

Dr Mathewson

Not yet.

Mary Scanlon

So far, our discussions have focused on the treatment time guarantee. In its submission, the General Medical Council says:

“The fundamental existing legal right of patients to refuse treatment appears not to have been included. ... the Bill does not ... recognise the distinction between patients with capacity who have a legal right to consent ... or refuse ... and patients who lack capacity.”

That seems to me to be a very serious issue. I am not a lawyer, but does the fact that there is no legal right to refuse in the bill not put at a disadvantage patients who refuse treatment or do not wish to comply with the recommended treatment?

Dr Mathewson

The short answer to that is yes.

Are you saying that patients will not be allowed to refuse treatment, which is a right that they have at present?

Dr Mathewson

Perhaps I am not in understanding mode. Patients would be disadvantaged by not having the legal right to refuse treatment, or a patient with incapacity would be disadvantaged if the bill were to go through.

Dr Simpson

Perhaps I might intervene, convener. The matter is probably covered in section 18(1)(c), which refers to

“any other enactment or rule of law”.

As patients will retain common-law rights to refuse treatment, I do not think that what Mary Scanlon suggests will be a problem.

Moreover, according to section 6(1), we are talking about

“an agreed treatment”.

Committee members seem to be giving evidence now. Once I let them loose, Mary, there is no holding them back. I am getting medical opinions to the right of me now.

There are too many experts. However, as the GMC is not giving evidence, I thought it appropriate to ask the BMA, the RCN and the Royal College of General Practitioners for their views on the issue.

The Convener

Before we proceed, I want to pick up on capacity, which is surely an issue in all walks of life. One of the main concerns of any professional is whether a patient has the capacity to consent to anything, whether that capacity is of a temporary or a permanent nature. Therefore, I do not think that we need it in primary legislation—it is just there.

Dr Mathewson

It is part and parcel of everyday doctor-patient exchanges.

That is the ex-lawyer speaking to the ex-medical practitioners. Have you finished, Mary?

The RCN and the BMA have not responded, but maybe they do not want to respond.

Well, that is grand.

Can I ask a supplementary question? Mary Scanlon has properly asked these witnesses about the GMC’s evidence, but I would like to ask them what they think section 18(1)(c) means.

I say, for the people in the public gallery, that the section states:

“Nothing in this Act prejudices ... any other enactment or rule of law.”

I presume that that means the Adults with Incapacity (Scotland) Act 2000.

Theresa Fyffe

That is what I understand.

And the Mental Health (Care and Treatment) (Scotland) Act 2003.

The Convener

And the rule of law, which is not necessarily in statute but may be judgments.

Thank you very much. That concludes this session. Our witnesses may change places, but I will keep us on the record because time is rolling on and I want to say something.

Members asked what happens to the reports that are published under the Scottish Public Services Ombudsman Act 2002. Section 15 of that act, “Reports on investigations”, states:

“(1) After conducting an investigation, the Ombudsman must—

(a) if the investigation is pursuant to a complaint, send a report of the investigation to the persons specified in section 11(2) and to the Scottish Ministers,

(b) if the investigation is pursuant to a request, send a report of the investigation to the persons specified in section 11(4) and to the Scottish Ministers,

and must lay a copy of the report before the Parliament.”

The phrase “before the Parliament” means in the Scottish Parliament information centre. The report will also be publicised in the Business Bulletin.

It will be on the website as well.

That is separate from parliamentary procedures. In terms of the Parliament’s procedures, what I have said is what is meant by that phrase. I hope that that answers the question that members raised.

That is very helpful. Thank you, convener.

The Convener

As the next witnesses take their seats, I advise members that, after this evidence session, I will suspend the meeting for five minutes before we move on to the final items on the agenda, the most important of which is the Alcohol etc (Scotland) Bill at stage 2.

The witnesses in the final panel represent patient groups. I also welcome John Gallacher, the secretary of Unison, who was meant to be on the previous panel but was unavoidably detained. We have before us Shelley Gray, director of policies and campaigns at the Long Term Conditions Alliance Scotland; Carolyn Roberts, head of policy and campaigns at the Scottish Association for Mental Health; and Delia Henry, director of the Royal National Institute for Deaf People Scotland, who was on the radio this morning. Beside them are Jim Elder-Woodward, board member of Inclusion Scotland, and Bill Scott, who is here to assist him. Completing the panel are Mhairi Thurston, lecturer in counselling at the University of Abertay Dundee, and Dr Allen Thurston, reader in education at the University of York, both of whom are representing the Royal National Institute of Blind People Scotland. When we go through our questions, I will ask you to self-nominate. You do not have to answer every question if you do not feel that it pertains to you. If you just want to agree, say, “I agree.”

Dr Simpson

I will direct my question to John Gallacher from Unison and, as he has listened to the earlier panel’s evidence, give him the opportunity to comment on any of the issues that were raised. The philosophical point that we were discussing with Bill Mathewson is contained in the third paragraph of Unison’s written submission:

“We are concerned that whilst creating little by way of new rights the Bill assembles those rights which do exist in a manner that suggests a relationship based on contract, rather than mutuality.”

We are all pursuing mutuality. Would you like to comment on the point about contract and mutuality? Also, you say the bill creates

“little by way of new rights”,

which suggests that it creates some new rights; I would love to hear what they are.

John Gallacher (Unison)

Thank you, convener. I apologise for the delay in my arrival.

The concept of mutuality is relatively new in NHS Scotland; it has been bandied around for the past year or so. We have had a strong tradition of staff engagement in policy and decision making in the health service; mutuality is about engaging the patient voice. There is a plethora of patient voices here this morning.

Various aspects of involving patients in service planning and delivery have been put into operation. There is the experimentation with elected health boards. Patient engagement forums have played an increasing role at board level. We believe that the concept of mutuality is about putting patients at the heart of planning and delivering the health service, not as customers who pitch up to—God forbid—purchase a service, and not in the same sense as users of other services. It is about the population and the staff who work in the health service having the right to co-manage and co-produce—to use the jargon—the services that are delivered.

Much of our submission is about the introduction of a litigious, commercial culture that we do not want in NHS Scotland. Significant legal challenges are already being made to decisions. Complaints have been made about staff, for example, and there are other challenges.

To answer your specific question, we do not believe that the bill would introduce any substantive new rights. It would simply assemble rights that exist in other pieces of legislation and can be enforced elsewhere. The only right that would be introduced is the right to seek judicial review, which it is clearly beyond the resources of most individuals to do. We do not believe that the bill will bring any significant new legal benefit to individual patients. We want the concept of mutuality to be introduced without introducing litigation into the debate.

Dr Simpson

That is very helpful. I have a small supplementary question and I might come back to the issue later if we have time.

One of my concerns is about whether enshrining all these concepts in primary legislation, which is difficult to amend, will in any way reduce staff rights. For example, when I was a practising consultant psychiatrist, some patients were extremely aggressive and difficult. They were not just not complying with treatment, which was their right, and they were verbally and physically abusive to staff. We denied some of those patients their rights to access general practice. If they wished to access a primary care service, they had to go to a particular special unit elsewhere. Those were extreme cases, but I am slightly concerned that, because the bill finds it so difficult to tackle responsibilities—we all understand that—it will put some staff at a disadvantage by creating new legal rights for patients. Do you have any comment to make on that?

11:00

John Gallacher

Yes. Violence and improper behaviour towards staff are huge problems in the health service. A particular case springs to mind from Edinburgh. A patient who is in prison has to attend for dialysis and, every time he attends, he routinely physically and verbally abuses staff. As you say, the withdrawal of treatment is usually done only in extremis. It is unusual for clinicians or general managers to decide that treatment can be withdrawn. We do not believe that patients’ responsibilities are stressed highly enough in the framework that is set up.

The other staffing issue is that the bill seeks to enshrine rights at a time when staffing resources in the health service are shrinking. The committee will be aware that, in this year alone, some 3,790 staff are being withdrawn. Far from what is written in the press, the NHS budget will not be featherbedded or protected in the next comprehensive spending review. Boards in Scotland are already planning for significant reductions next year of up to 4 per cent in efficiency savings. The number of staff losses will grow significantly. That means that, at the very time when there might be rights to assert, the staff who are left to deliver services under increasing pressure will suffer ill treatment, which is unacceptable.

Ross Finnie

Good morning. Unison expressed concern in its written evidence about the advantages of enshrining patient rights in a bill. Inclusion Scotland expressed concerns about the use of the words “have regard to”. Long Term Conditions Alliance Scotland seeks an additional code of practice. The others before us generally appear to support the bill. How will we benefit by enshrining our rights in the bill, when section 18(2) expressly states:

“Nothing in this Act gives rise to—

(a) any liability to pay damages,

(b) any right of action for specific implement,

(c) any right of action for interdict,

(d) any right of action for suspension”?

I am not getting into the argument about whether we need rights, but what is the benefit of bringing the rights that exist into this bill, given that it outlines those specific exclusions?

Shelley Gray (Long Term Conditions Alliance Scotland)

This was picked up on in the previous panel. Many of these rights are already in codes of practice and so on, but it is clear that they are not being implemented sufficiently. If the bill prompts work to embed patient rights throughout the NHS—the Government has talked about increasing advocacy services and introducing a programme of training for NHS staff as a result of the bill—and to embed a culture of rights in the NHS, that would be of major value. Some elements of the bill, such as the expectation that staff will communicate with patients in a certain way, could be strengthened, such as by stating that information will be provided in an accessible way. If the expectation was all there in one bill, that would make a difference.

Do you need the bill to do that? The health secretary could issue a direction under the 1978 act calling for that to happen. Why do we need an act of Parliament that implies that you have some legal right, when section 18(2) removes it?

Shelley Gray

It is about individuals having rights, but it is also about the expectation on staff working in the NHS not just to tell people about their rights but to do things proactively such as providing information in accessible formats, supporting people’s right to access advocacy, communicating with them and so on. We think that having that in a bill would help.

Jim Elder-Woodward (Inclusion Scotland)

Good morning. I am rather perturbed by the paternalism of professional bodies in relation to the use of the word “mutuality”. By mutuality, I understand that there is equality between the two groups; otherwise, mutuality cannot exist. When Theresa Fyffe was talking about mutuality this morning, I wondered whether her argument could have been used against equality for women because it would upset mutuality between men and women—although obviously, it does not.

Mutuality arises only when both sides are equal and both sides have some resource. I think that having a right gives the patient a resource so that they can come to the table on a mutual basis. We know that disabled people face a vast amount of inequality in health. People are left unhelped to feed, and disabled people are not given the same access to screening as other people—there is a whole host of areas in which inequality exists. If we are to work on the basis of mutuality, each person around the table needs to bring a resource with them. For patients, the resource will be the Patient Rights (Scotland) Bill when it comes into force in 2011 or whenever.

So you are saying that the bill will redress an imbalance.

Jim Elder-Woodward

Yes, it will redress an imbalance. We cannot have mutuality if one actor is less resourced and less empowered than the other.

Dr Allen Thurston (University of York and Royal National Institute of Blind People Scotland)

I guess that the question is really: what might the bill add? I have looked at the history, and our main evidence obviously relates to communication in accessible formats for blind and partially sighted people. There is already legislation, such as the disability discrimination legislation, which should ensure that people who are blind and partially sighted receive information in an accessible format.

Written into the professional standards of the Royal College of Physicians, the General Medical Council, the Nursing and Midwifery Council and the Royal Pharmaceutical Society are statutes that say that their professionals should communicate with blind and partially sighted people in an accessible format. However, the RNIB has now produced four reports—including reports in 1998 and 2008, and one in 2004 from Guide Dogs for the Blind—and 12 years on we still have the same problem. Although all the professional bodies state that communication in an accessible format is part of professional standards and behaviour, 12 years on and four reports later, not a lot has changed. There are issues of confidentiality, for example—if you have to hand someone a letter to read it to you, your confidentiality is breached.

Perhaps there is a need for something to focus the minds and change the behaviour of the professional bodies that work with people who require information in an accessible format. It is not for me to say what is the best way to do that—Parliament will have its own ideas—but something has to change. It is unfair to continue with the way things are.

Ross Finnie

I happen to agree with you, but I also think that it is up to you to tell us what is the best way forward. I suppose that we have the ultimate decision and power in that respect but a question has crystallised around the bill that the Government has proposed. You and your organisation have raised very real concerns that the various things that have been implemented are not actually being done. As a parliamentarian taking evidence from all the organisations before me—including, at the moment, the RNIB—I have to wonder whether we need to address the situation through the bill, which expressly removes access to law in so many ways, or whether we take some of the subsidiary work that the Government is very properly carrying out and introduce a range of other documentation that sets out the various rights. My concern is whether we actually need a new bill.

Dr Thurston

Despite the regulatory and professional conduct standards of the bodies in question, despite the laws that have been introduced and despite the fact that this has been a persistent problem for a long time, nothing has changed. Perhaps the bill is required to change practice.

So what would it do?

Dr Thurston

It might well focus the minds of those who work with patients. To some extent, I am a one-trick pony; my main interest this morning is about protecting patient confidentiality through communication in accessible formats. There are wider issues, which you have debated with other witnesses, but I guess that I want the focus to be put back on to the chain. Perhaps the doctor thinks that the patient has been communicated with in an accessible format and does not give it much thought once the patient has left the waiting room and the letter has been printed off by the receptionist or passed on by the nurse. We need something that will focus the minds of all the people in the chain on ensuring that none of its links is broken and that we do not have situations in which patients get letters that they cannot read or, as far as the RNID is concerned, in which appointments cannot be made because the people at the other end do not have the right machinery.

I should clarify that although nothing in the bill can be enforced, it does not affect pre-existing provisions. We are not saying that all current rights will be wiped out.

Delia Henry (Royal National Institute for Deaf People Scotland)

As we say in our written submission, the important issue is the practical implementation of the bill’s provisions. I am encouraged that we are having this debate, but I have to say that, when I reread our submission, I was struck by the fact that it highlights fairly basic principles of communication in respect of people who are deaf and hard of hearing and talks about a fairly basic lack of access to health in certain fundamental areas. For example, people have to get someone else to make phone calls for them because health departments—even audiology departments—expect people to contact them by phone. I am sure that everyone around the table finds that shocking, but the fact is that we regularly hear such stories.

In the work that we carried out to inform the submission, our members kept telling us that they did not want to make complaints but simply wanted to access health in a quality way. That notion of quality underpins our submission and we need to think seriously about whether the bill can enforce that. As I say, our membership and organisation support the practical implementation of the bill’s principles and hope that they help to make a level playing field for patients and to ensure that health care professionals and patients work in a mutual way to deliver a good-quality health service.

11:15

Ross Finnie

What has been said highlights the dilemma for me. I do not in any way disagree with the point that there is a need to make some of the existing statements work—Delia Henry said something not too dissimilar, and her written submission also makes that point. What is less clear—although it is not Delia Henry or Allen Thurston who is less clear—is whether setting that out in a bill that does not give any new rights is the appropriate way to ensure that that happens. That is the difficulty. It is about the vehicle. I have no difficulty at all with the purpose that Delia Henry wants to achieve for her members and the purpose that Allen Thurston has identified. That is not my problem. I am clear that we need to do something slightly differently so that their members get a better kick at the ball. However, I am not clear whether the bill is the right way of delivering that. That is the dilemma.

Mhairi Thurston (Royal National Institute of Blind People Scotland)

One finding of the survey that was conducted for the RNIB was that people do not complain. Largely, there is no voice from blind and partially sighted people about not receiving information in an accessible format. That is where the bill could provide a benefit. In a way, there is no complaints culture among blind and partially sighted people. Although complaints procedures are in place, people do not use them because they do not have enough energy or they do not want to be troublemakers or cause waves. The mechanism in the bill takes away the onus to complain and puts in place rights. That legal framework might help.

Ross Finnie

Let me pursue that for one second. You say that the bill will help by putting in place a legal framework. To return to my colleague Michael Matheson’s point, normally if I confer on you a right, I also confer on you a right to have recourse to a court of law. However, that is not how the bill is drafted, and that is the difficulty. I am not sure that you want that, but are you telling me that your members would be better off if they had a right to go to law?

Mhairi Thurston

The point is more that, rather than have the onus on them to go to law, there should be an awareness on the professional and clinician side. In a perverse way, it is about emphasising the responsibility on the clinician side, rather than the patient side, if that makes sense.

Jim Elder-Woodward

I would take Ross Finnie’s big step and allow patients to go to law. There is an argument for that. How else can we underpin the power of the patient to be at the table on a mutual basis? The patient needs to have power behind them to equalise the relationship between them and the professional. The bill has big holes in it. One of them is a lack of awareness of how to spend the £500,000 on advocacy. To empower certain patients, they need an independent advocate, and I do not think that £500,000 a year is sufficient for a national advocacy service. If we are to have patient rights officers, we need to equalise that by having independent advocacy in each board area. I am talking about how to empower patients in the professional-patient relationship. I agree that the bill does not go far enough in the empowerment of patients.

Dr Simpson

My supplementary fits well with Jim Elder-Woodward’s point. If I understand the witnesses correctly, they are saying that the problem lies in the fact that people do not exercise their rights. There are rights in existence. The Disability Discrimination Act 1995 alone gave enormous rights—

Jim Elder-Woodward

Ah!

Wait before you come in. Richard Simpson has stirred a hornet’s nest by mentioning the DDA.

Dr Simpson

—which are not being enforced. The message that I am getting is that it is not working.

I just do not see how spending £1.6 million on patient rights officers will help, because their role is one of signposting, not advocacy. If the current situation is that the people whom the witnesses represent do not know to complain, they will not even get to the patient rights officer. The problem lies at an earlier stage. It is about ensuring that it is communicated to people, clearly and precisely and in the correct format, what their rights are and how they can take them forward. The IASS works quite well, but funding is being cut from half the service, so if we are serious about the issue, that is where the money should be going, not on the new patient rights officers.

I think that you are giving evidence, Richard.

There was a question: do the witnesses agree?

There was a question only because I prompted you.

Jim Elder-Woodward

What a leading question!

Dr Thurston

The results of our survey indicated that blind and partially sighted people were aware of their rights—nine out of 10 of them knew that they had a right to receive information in an accessible format, but only one out of 10 actually received it, and the proportion who complained was even smaller. It is about disempowerment—it is more to do with the fact that people are disempowered when it comes to the complaints procedure. People know that they have rights; they know that they are there. The point that Mhairi was making is that a top-down approach is necessary. It is the hospitals and the clinicians that need to change what they are doing. We are not necessarily calling for more things that people can complain or sue about; we are calling for something that addresses systemically the wrongs that are occurring in the NHS at the moment.

I gather that there has been a 20 per cent increase in the number of complaints in England since the new constitution and the patients charter came in, so perhaps something is happening.

I say to the witnesses that they have to be less than subtle if they want to enter the discussion, as my eyes are trying to see everything.

Shelley Gray

I echo what Allen Thurston said. One of the key things about the present situation is that the onus is on organisations such as ours to highlight issues such as the failings that are happening, which include people not being given information in the way that they need it or communicated with appropriately. I am not a legal expert, but I think that one advantage of the bill would be that it would put an onus on the NHS and the Government to monitor how effectively it was implemented, which would pick up many of the issues that our organisation has put a lot of time and work into picking up. That would be a key benefit of the bill.

Carolyn Roberts has been sitting quietly and patiently, so I—

She will not be doing so for much longer, now that you are targeting her.

Mary Scanlon

Carolyn, I am not sure whether you were here for the discussion earlier in the meeting about patient rights in relation to the treatment time guarantee. I think that you were extremely diplomatic and courteous in your submission, but is it not the case that every mental health patient in Scotland—apart from children—whom you represent will be excluded from what the bill provides? I will obviously ask whether you agree with me and what your concerns—

Excuse me. I do not want such questions to become infectious.

As far as mutuality is concerned, are there any aspects of the bill that would benefit adult mental health patients?

Carolyn Roberts (Scottish Association for Mental Health)

We support the Patient Rights (Scotland) Bill. I have been quiet so far because everyone else was making the points that I would have made.

I thank you for that.

Carolyn Roberts

Our main concern is about access to mental health services, which is excluded from the 18-week target, and from the Patient Rights (Scotland) Bill. That has a knock-on effect: because there is not the same guarantee about access to mental health services, less is done to gather waiting time statistics in that area. I am sure that the committee is aware that it is difficult to get information on how long people wait for adult mental health services because there is no requirement to meet any of the current waiting times guarantees. We are concerned that the lack of provision in the bill in that regard could perpetuate the situation.

We see benefit in the bill, but we are disappointed that there is little in it for adults with mental health problems. That could be addressed, either by extending the treatment time guarantee to mental health services or by including a section in the bill to say that the position will be reviewed later. A number of options could be considered. At the moment, however, we are disappointed that mental health services are not mentioned in the bill.

Mary Scanlon

I made a freedom of information request two years ago regarding psychology services in Easter Ross, in the Highlands. Patients there were waiting for four years and seven months to see a psychologist, and I do not see any benefit for them in the bill.

The final point in your written submission is:

“The Scottish Government must give further consideration as to how it can ensure mental health service users are also able to benefit from such guarantees, and have their human rights upheld.”

I am no expert in human rights, but does the bill bring forward some form of discrimination, bearing in mind that some patients have more rights than others? Adult mental health patients have no rights under the bill. Are you alluding to some potential legal challenge, on the basis that equal rights will not be upheld under the bill?

Could I clarify the point? Patients have rights; what they do not have are rights specifically concerning mental health services. They have rights relating to services being patient focused and providing optimum benefits.

But nothing that relates to the bill—there is no treatment time guarantee.

Indeed—that is specific.

There is a right to be treated with dignity and respect, as we would always assume, but as far as the bill is concerned, adult mental health patients are excluded.

The Convener

Yes—we accept that as regards treatment time guarantees. I am making it plain to anybody listening that the bill is not called the patient rights (but not including people with mental health issues) bill. It relates to some aspects, but not to guarantees about treatment times—that is the point.

And that is at the core of the bill.

Carolyn Roberts

I take all the points that have been made. We had some discussions with the bill team while the bill was being drafted regarding its human rights implications, and we are pleased that there was mention in the policy memorandum of article 12 of the International Covenant on Economic, Social and Cultural Rights with regard to

“the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”,

so there is some recognition of human rights in there. However, we are concerned that the bill perpetuates what started with the 18-week guarantee—most mental health services are excluded from it. That could be addressed, however—there is still room to change the bill so that it could be of assistance to people with mental health problems.

I take the point that only the treatment time guarantee excludes mental health services. The other areas of the bill would benefit people with mental health problems as much as they would benefit other people, as long as there was proper training for the patient rights officers so that they had some awareness of mental health. The exclusion from the treatment time guarantee is, however, a disappointment for us.

Jim Elder-Woodward

We are particularly concerned about the remoteness of the PROs, in that there will be only one or two of them per health board, and there will not be any in local hospitals. They will be very remote, and their remit in providing information will be limited. There is nothing in the bill to say that they will facilitate the provision of information from professional to patient. We feel strongly that the PROs will not be able to do their job effectively.

11:30

Helen Eadie

As a consequence of previous Governments’ decisions, we already have an independent advocacy support service in Scotland. I am interested to know the witnesses’ perceptions as to why the service is not working. The service is there as a result of a Government decision and it is funded by health boards, although it was established by Citizens Advice Scotland. What is it about the service that is not working but which you think the bill could change, given that such change is proposed?

Jim Elder-Woodward

I do not think that the service is well enough organised. It is also there to give information and advice; it is not there to advocate and it is not there to facilitate dialogue between professional and patient. If the independent advisory and support service is to be developed, it needs to be beefed up, it needs to be local, it needs to be visible and it needs to be beside the patient, not miles away in some office.

Helen Eadie

Is that not a matter of monitoring, managing and getting feedback about the existing service? I know from my work as an MSP that the independent advocacy support service does advocacy work in my area. I do not know about the experience of other MSPs on the committee, but it certainly works in that way in my area.

Jim Elder-Woodward

It does not in mine.

Helen Eadie

Is that not an issue about Government monitoring, evaluating, assessing and putting right the problems that exist in a service that is already enshrined in legislation? We would not be introducing something new; it already exists. The bill would duplicate something that is already in place.

Mhairi Thurston

You have made a really good point, but the findings of our survey show that there is an onus on the patient to pursue and activate the service. In the case of our client group, the patient is often quite disempowered and weary from living with a condition that excludes them from society. The thought of pursuing advocacy is sometimes an option that they do not want to take. They do not have the strength or the stamina to pursue that, even though the service may be accessible. We have said that it will be of benefit if the Patient Rights (Scotland) Bill introduces more systemic change, which means implementation by clinicians and a greater emphasis on clinicians tackling the problems that we highlighted in our report.

Helen Eadie

I am totally in sympathy with your concerns, as, I think, all committee members are. However, we face a challenge, which is why we need answers from you. The DDA and all the different acts are there—I have campaigned for years, for example, to get accessible railway stations for my community; such access is enshrined in legislation. However, the bill has no means of enforcement, so it does not give me or my constituents any power. The question that we are struggling with is whether a piece of legislation that does not give you any way to enforce it is worth the paper that it is written on. That is what you have to persuade me about this morning.

Mhairi Thurston

If I may, convener—

It is lovely to have someone who defers to me, as I am so unused to it. You can come back—teach members something.

Mhairi Thurston

There is almost an analogy with a nuclear deterrent. If we have it in place, will it make a difference?

The nuclear deterrent clause—or is it mutual deterrence? [Laughter.]

In what way is the bill a deterrent? There is nothing that I can enforce if a clinician does not do something that they should do. Where does that leave us? Where is the bomb?

The Convener

I do not want us to get frivolous—it has been a long session—but I think that that word might just bring security in here. [Laughter.]

We seem to have ended that discussion, but Mr Elder-Woodward wants to come in. Let us get sensible again.

Jim Elder-Woodward

I just want to make the distinction between giving advice and advocating on behalf of someone. There is a difference between independent advice and support services and advocating on behalf of a patient to have his rights secured. If a patient has no rights, there is no need for an advocacy service and we might as well all go home now.

It is difficult to have a right that is not enforceable. Disabled people have a big book about a foot high of United Nations rights that are not enforceable. I could quote article 2 and article 25 of the United Nations convention on the rights of disabled people, which give me the right to equality in the health service, but because that is not in domestic legislation, we cannot enforce it. The bill gives one more right on top of the rights in that big book. The only thing that it will do is highlight the need to treat disabled people and patients with respect and dignity. I am sorry, but no amount of patronising talk from doctors and nurses about wanting to give dignity and work in mutuality with patients will satisfy me unless I can come to the table empowered to assert my dignity and my rights. That is important to disabled people.

I was going to stop there because I think that that is a powerful argument, but Dr Thurston has indicated that he wants to speak. I am sure that he will make a powerful point, too.

Dr Thurston

I thought you were going to stop there, convener. I just thought that I would go into extra time.

The problem is how to bring about systemic change within the NHS in order to ensure that these things happen for people who are either deaf or blind or partially sighted. Self-regulation by professional bodies has not been working for a long time, so I would turn the question around and ask what will change without the bill and without something happening. Nobody in the NHS is self-employed. The employees work for a large, systemic Government organisation that is paid for by taxpayers. What change will happen without an overarching bill that says, “This is how you need to behave if you are employed by us”? It is not necessarily about empowering individuals to go to law or to seek compensation; it is about trying to bring about systemic change throughout the NHS.

Helen Eadie

When you spoke earlier about issues of confidentiality, you said that you are here as a one-trick pony. I sympathise with that, but the issue is that we already have the data protection legislation. What is wrong with that in terms of protecting patient confidentiality?

Dr Thurston

Perhaps people in the NHS do not see it as applying to them. There are Caldicott guardians in the system who protect patient confidentiality in the transfer of electronic information, but I guess that there is a disconnect between people seeing the disability discrimination legislation and the data protection legislation and their understanding how it applies to them in their job. Perhaps it is the bill’s job to bring those things together and say, “This is how the legislation applies to you in the NHS. You can improve care and outcomes for patients by behaving in this way.”

The Convener

I think that we will stop there because we have pretty well exhausted all sides of the argument. I thank everyone for giving evidence. I suspend the meeting for five minutes.

11:40 Meeting suspended.

11:47 On resuming—