Patients' Rights Bill
The next item of business is a debate on patients' rights.
It gives me great pleasure to set out the Scottish Government's proposals for a patients' rights bill for users of the national health service in Scotland. The mutual NHS described in our "Better Health, Better Care: Action Plan", published in December 2007, is one in which patients and staff value each others' experience, knowledge and skills. A truly mutual NHS will be one in which patients have more control over their own health and in which decisions about how our NHS is run are shared by all: patients, staff and planners. At the heart of our vision of a mutual NHS is a set of principles that include dignity and respect, equality, fairness and autonomy—principles that mirror equality and human rights legislation.
On 22 September, I launched a public consultation, which will run until 16 January 2009, seeking the views of the people of Scotland on the possible content of a patients' rights bill. It is intended that such a bill, if enacted by Parliament, will underpin our vision of a mutual NHS. The consultation document sets out our thoughts on why patients' rights and, indeed, responsibilities are important; what rights should be included in the bill; and what difference this will make to patients. The consultation also describes proposals for improving the effectiveness and independence of redress—what patients can do if things go wrong. The bill's aim is to reinforce and strengthen our commitment to place patients at the centre of the NHS in Scotland.
As members will be aware, there are already a number of existing patients' rights and entitlements, but those are not always widely understood or exercised by patients. To be useful to patients, it is essential that a patients' rights bill is easily understood, clearly communicated and simple to enforce. It will therefore include provision for a charter of mutual rights, which will set out how patients' rights will be delivered in practice and will provide a clear framework and guidance for staff. Those rights and their associated responsibilities are relevant to all aspects of health and health care, and to patients, carers, families, local communities and NHS staff. It is intended that they will apply wherever and whenever NHS care is provided.
The consultation suggests that the bill should include patients' entitlements and responsibilities in relation to: equity of access to NHS care; respect, dignity and consideration for the individual, both for patients and for staff who work in our NHS; safe and effective care and treatment; clear and appropriate communication; information about services and care and treatment options; patients' participation in decisions about their individual health, as well as decisions about their health services; privacy and confidentiality of personal information; and independent support and redress.
As I speak to patients and their families across Scotland—I am sure that this experience is shared by other members of the Parliament—they tell me that access to swift and safe treatment remains a key issue, if not the key issue, for them. That is why we propose that a central part of a patients' rights bill will be a legally binding waiting time guarantee that is easily understood by patients and their families. Clearly, when a patient has been told that they require surgery, waiting for admission to hospital can be a time of anxiety and stress. That is why we have decided that that important part of the patient pathway should have a legally binding waiting time guarantee of 12 weeks. The new, legally binding 12-week guarantee will sit within the overall 18-week referral-to-treatment standard that will apply across Scotland by 2011. It means that if someone is diagnosed within, say, two weeks, their overall waiting time should be no more than 14 weeks. On the other hand, in the small number of complicated cases where diagnosis and decision about treatment may take longer than 18 weeks, a patient will still know that, once diagnosis is confirmed, a long-stop guarantee of treatment within 12 weeks will apply. This will mean that patients will be fully aware of what the waiting time will be following diagnosis and will have certainty that it will be delivered. Of course, within that timeframe and within any waiting time guarantee, clinicians will continue to have the flexibility and freedom to set the clinical priority that is most appropriate for their patients, particularly those requiring urgent treatment.
The new proposal is all about providing clarity and certainty to patients. Should an NHS board be unable to meet the proposed waiting time guarantee, it will be required to take steps to ensure that swift treatment is provided elsewhere—for example, in another NHS board area, at the Golden Jubilee national hospital, or elsewhere in the United Kingdom.
To help us deliver on the waiting time guarantee, the Government has decided to commit an additional £270 million over the next three years to allow boards to take action and redesign services in a way that allows the ambitious new target to be met.
Will that include using spare capacity in the private sector to meet the waiting time guarantee?
Boards are already able to use existing capacity in the private sector to meet waiting time guarantees if they are unable to do so from within their own capacity. There is nothing in the proposed patients' rights bill that would seek to change that position.
In addition to the provisions on waiting times, the bill will do a number of other things. It will acknowledge that Scotland is a socially and culturally diverse society and that patients' rights apply across that diversity, and it will require health services to provide accessible and appropriate services that are responsive to the individual needs, background and circumstances of people's lives. People have the right to the support that they need to access health services—for example, access to an interpreter or to patient transport. Patients also have a right to expect health care services to be provided with care, skill and competence in a safe environment. We know that, while the care provided in NHS Scotland is already of a high standard, we can always get better. That is why we have set up the Scottish patient safety alliance. The alliance supports staff to improve steadily the reliability and safety of health care services and ensure, crucially, that we learn from incidents that have safety implications where and when they occur.
A patients' rights bill will underline the critical importance of communicating with patients in a clear, accessible and appropriate way. We know from reports from the Scottish Public Services Ombudsman that communication can and sometimes does break down at any stage of the patient journey. Patients should have a right to the support of a family member, interpreter, advocate or other independent supporter to help them understand the implications of the options available to them and help them express their views.
How will that tie in with the issue of remoteness and distance, which can be crucial in determining whether family members can join in and help?
That is an important point. As I have said on previous occasions in the chamber, patients should have the same rights in the health service regardless of where in Scotland they live. That should apply as much to advocacy and support as to the range of other rights that I have mentioned.
By April next year, we intend to introduce a health information and support service that will bring together quality-assured local and national information from the NHS, the voluntary sector and other sectors. Patients and their families will be able to access the information online, by telephone and in their local high street. Every household in Scotland will receive an easily understood report about their rights and responsibilities, local NHS services and how well their NHS board is performing and engaging with the community. If the proposed bill is enacted, all NHS boards will also be required to designate independent patients' rights officers to help patients to understand and access their rights.
Most people who seek redress after something has gone wrong want an explanation or apology and an assurance that lessons have been learned, but there are times when financial compensation is appropriate. At present, generally patients can receive compensation only when they can establish negligence through a legal process. A no-fault compensation scheme could be simpler than existing processes and could support the development of the concept of a mutual NHS, as well as a positive feedback and learning culture, without the need for recourse to the courts. As a Government, we consider that no-fault compensation is the way forward for the NHS in Scotland, but we recognise that further work is needed on the practical implications and possible costs of such a scheme. We will consider the responses to the consultation before making any firm decision on future arrangements.
The proposals that I have outlined are by no means exhaustive. In the coming months, following full consideration of the responses to the consultation exercise and further debate in the Parliament, we plan to introduce legislation in the form of a patients' rights bill. I believe that such a bill will have an impact on every part of the NHS in Scotland. The Government's aim is to deliver a truly mutual NHS that respects the rights of patients and NHS staff and allows them to work in partnership to deliver a world class service. I believe that that is in line with the founding principles of the NHS when it was introduced 60 years ago and that it is right for the future of patients in Scotland.
I welcome the opportunity provided by this morning's debate. There will surely be plenty of political point scoring elsewhere today so, perhaps unusually, I will set that aside. Instead, I will explore concerns about the proposals and make constructive and helpful suggestions on what further work could be done to ensure that the legislation that is introduced will be worth while.
My starting point is that I am generally supportive of a rights-based approach. In any public service, people should know what is to be provided and what level of service they ought to expect. They should also be able to be involved in decisions that affect them and, of course, they should be able to seek redress when things go wrong. However, having worked for many years for a rights and advocacy organisation and developed a charter of rights for children in care, I can also foresee where difficulties will lie. We must avoid passing legislation that makes no difference to the patient or, worse still, simply creates new layers and levels of costly bureaucracy. That said, I am generally sympathetic to the cabinet secretary's aim of a mutual health service that encourages people to feel that it is genuinely their service.
However, there is a difference between taking ownership of how the health service is run and being involved in our own health care. For many patients, the last thing that they want when they desperately need treatment is to be concerned with the structures of the NHS, its complaints procedures and how they can seek redress at that point in time, but they will want a real say in the options that are available to them for treatment.
One point in the consultation document that the cabinet secretary mentioned is the proposal for a charter of mutual rights. Can she explain in more detail—perhaps later in the debate—how that is intended to work in practice? Will the charter simply be the list of existing rights that are outlined in the document, with the addition of the waiting time guarantee, or will it be something broader? Will it encompass rights across a wider range of health provision? Will it be legally enforceable as part of the process of ensuring that patients have rights under which they can seek redress? That is an important point because, in my view, a charter that is simply a list under which there is no redress would not be worth anything other than, literally, the paper on which it was written.
Although the proposals on the waiting time guarantee build on what the previous Administration did and include much that we can support, we have some concerns about whether legislation is the only way to ensure that the waiting time guarantee is met. It is likely that redress will be sought in only a few cases, so we need to consider the issue of proportionality. Do we need legislation on the waiting time guarantee or are there other ways in which it could be enforced? We will need to discuss that issue during the course of the bill. Another concern is that a range of patients would not necessarily be covered, including those with mental health problems, who I am sure members will mention during the debate.
Giving patients the right to go elsewhere in the UK or Europe sounds good in principle, but may not work in practice for all, so we need to explore that proposal in a bit more detail. People with family commitments, those from vulnerable groups and elderly people may feel unable to exercise such a right. For some vulnerable people, the prospect of a hospital admission is frightening enough without the thought of being away from family and friends or travelling into the unknown. We need to ensure that it is not simply the affluent and the articulate who are able to exercise such a right, with others perhaps taking the view, "I'll just leave it for now, thank you very much, and wait my turn on the list."
The consultation document makes much of access to independent support and redress. As Tom McCabe and others pointed out to the Cabinet Secretary for Finance and Sustainable Growth during this morning's statement, patients already have a number of ways to complain, but it can be quite difficult for people to negotiate their way through those in deciding whether they should complain to their local NHS board, seek support from independent advice, approach the SPSO or seek legal redress. We need to hear a bit more about how the proposals that John Swinney outlined this morning will fit with the bill. I look forward to hearing more on that.
The consultation paper suggests that boards should be proactive in introducing the patients' rights officers to which Nicola Sturgeon referred, but those need to be adequately funded if they are to be meaningful. Will there be statutory provision for patients' rights officers? Will there be funding to ensure that they are available? From my experience of dealing with children's rights, I know that non-statutory posts tend to be the first to be hit when funding is tight or difficult decisions need to be made. The paper also mentions new approaches, including local resolution, but provides little detail on what those should be. I believe that there is an opportunity to explore more fully how mediation could be offered and used, but we need to understand who will provide such mediation, what training will be given and how it will be funded.
As the consultation paper states—and as the cabinet secretary has repeated—people often want just an apology or explanation but there will be some cases in which financial compensation is appropriate. I generally welcome the proposal for no-fault compensation, although I recognise that it would involve some difficulties, which were outlined by a report back in March 2003 that considered that and other issues in the health service. Rather than simply wait for the outcome of the consultation, the cabinet secretary should consider setting up an expert group to consider the previous work in detail, identify the issues and begin to consider proposals to put the idea into practice. Unless such proposals are made as part of or in the context of the proposed patients' rights bill, we will have a pretty thin bill, which will focus only on the waiting time guarantee and the means of legal redress and will not take a wider view on no-fault compensation.
Mutual responsibility is important. All members agree that staff should not be physically or verbally abused. I want to ensure that the cabinet secretary intends to continue to work with the trade unions on the issue.
The cabinet secretary talked about patients' dignity. The Royal College of Nursing is calling for consideration of patients' dignity to be an essential part of all policy making, to ensure that in all decisions consideration is given to whether the proposed course of action would add to patient dignity.
Breakthrough Breast Cancer identified concern about what it would mean to make patients legally responsible for
"seeking and using information appropriately to support their own health".
We need to pursue in more detail that statement in the consultation paper. What exactly does it mean? Similarly, what would the proposal to give patients responsibility for heeding lifestyle advice mean in practice? Who would decide what lifestyle advice was appropriate and whether it had been heeded appropriately? I sound a note of caution: it might be harder for patients in vulnerable and disadvantaged groups to take on board lifestyle advice that the rest of us perhaps take for granted.
The Long-Term Conditions Alliance Scotland has called for consideration of and reference to transitions from children's services to adult services and from adult services to elderly care services. During such transitions people can be at their most vulnerable. The matter is worthy of consideration. The alliance also asked how the bill's provisions would be incorporated into training and how its effect would be monitored, which is particularly important in light of John Swinney's statement this morning.
The debate gives us a useful opportunity to consider patients' rights. A key issue is how we make the Government's aims work in practice. It is not yet clear to me how the Government's wish to
"create a clear legal framework of rights for patients"
fits with its desire to
"avoid encouraging a culture of blame or litigation."
We need to understand the Government's intentions in more detail. There is understandable concern that hard-pressed health boards might be forced into taking cash from the front line to put the new arrangements in place, so I will want to give close consideration to the bill's financial memorandum.
The debate is important and I hope that we will hear more from the cabinet secretary. All members want patients to be at the centre of the NHS in Scotland. We all want to ensure that everyone gets the appropriate treatment at the appropriate time.
The debate is useful. I was interested in Cathy Jamieson's comments on the unintended consequences of the Government's proposals and I will consider other unintended consequences.
The Conservative Party introduced the first patients charter, in 1991. The charter was revised in 1995 and was revised again, by the Labour Party, in the late 1990s. Patients' rights and responsibilities are not new; what is new is the legal recourse that would be enshrined in the proposed bill—if members can find that in the consultation paper. Where there are rights, which we welcome, there must also be responsibilities. Jackson Carlaw will talk about patients' responsibilities.
The Scottish National Party's manifesto contained a commitment to introduce not only a patients' rights bill but an NHS redress bill, which would
"give patients an alternative to pursuing a medical negligence claim by introducing a right to redress without having to go through a lengthy legal battle."
The NHS redress bill was intended to
"replace the current NHS clinical negligence scheme with a no-fault system of compensation".
Conservatives are committed to a lighter touch in legislating, so we could accept two bills that were rolled into one. However, we question whether legislation is needed at all, as does the Labour Party.
The consultation document contains 79 paragraphs, but only paragraphs 68 and 69 mention no-fault compensation. If the consultation exercise does not invite people to give their views on no-fault compensation, no one can be expected to do so—ask no questions and you will get no answers. The paper says:
"It is possible that there may be cases in which financial compensation should be paid without the need to go through such a legal process … We therefore favour no-fault compensation as the way forward for the NHS in Scotland".
However, I sense another SNP U-turn. A proposal that might have sounded good in the manifesto and at the hustings is disappearing when the reality check kicks in.
The proposed patients' rights bill must be underpinned by a clear definition of patients' rights in every sector. It cannot be right to introduce waiting time guarantees in relation to some conditions but not others. In that regard, I use again the examples of mental health services, infertility treatment, drug and alcohol services and physiotherapy. Many general practitioners do not bother to refer patients to physiotherapists because the waiting lists are too long and they think that patients can pay for private treatment.
It is proposed that patients will be able to seek redress if the waiting time guarantee cannot be met. According to paragraph 60:
"feedback will be actively encouraged. This will be used to explore the best approach to quick and effective means to resolve any problems patients may encounter when using health services, and to ensure effective redress where patient rights are not met. The feedback will also be used to make changes and improvements in the way services are delivered".
I thought that that was already happening. Where is the mention of legal redress? I worked until 8 pm last night and I had to ask a few colleagues whether I had missed something. Is the proposed legal guarantee simply an assurance on feedback and resolution, as paragraph 60 suggests? What legal implications will there be if the waiting time guarantee is not met? I would have thought that patients have a right not to become infected during a stay in hospital, but it is not clear what legal redress a patient in such a situation would have. Could they sue? If a patient died as a result of an infection, would the family have more right to sue the health service than is currently the case? Will the proposed new arrangements bring benefits for patients?
Will the member give way?
Not now.
What would happen if a clinician refused to prescribe a cancer drug that a patient wanted?
I want to talk about patients' involvement in decisions about their care. Like the RCN, we all want patients to be treated with respect and to be accorded dignity. None of us wants to hear about cases such as the ones that were described on "Good Morning Scotland" today. It says in the consultation paper that patients' views
"will be given the same level of consideration as clinical opinion when coming to decisions about their care and treatment."
A patient might decide not to have further treatment, despite the best clinical judgment. As it says in paragraph 53 of the consultation paper, the bill will enshrine a patient's right to
"withdraw consent or refuse further treatment, even if previous consent has been given to the treatment or procedure".
A huge amount of clarification is needed in that regard. If a patient died because they had refused further treatment, would their death fall into the category of voluntary suicide? If a clinician supported a patient's right to have no further treatment and the withdrawal of treatment led to the patient's death, could it be argued that there had been a case of assisted dying? I ask the question with the best of intentions, because the issue has been raised in the Parliament. More clarity about the Government's intentions and greater scrutiny of the proposed bill's unintended consequences are needed in relation to paragraph 53 and other aspects of the consultation paper.
My final point is that, in considering rights and responsibilities, we must remember the rights of NHS staff. Our national health service may be the caring profession, but it is not always too caring about the management of its own staff. I ask that all NHS staff be treated with respect and dignity by their employer, particularly in relation to employment rights, human relations and personnel management. Far too many staff are suspended in the long term without any proper support, dignity, respect or hope of getting back to work.
The cabinet secretary stated at the outset that she would make the case for a patients' rights bill, and she helpfully set out some of the guiding principles that would underpin such a bill. She made particular reference to reinforcing and strengthening patients' rights and raised the important question of additional clarity. She referred to the charter, which is set out in the consultation document, and talked about entitlements and responsibilities. She then spoke about the new legally binding waiting time guarantee, access to information and no-fault compensation.
However, I was disappointed that the cabinet secretary did not devote any time to the issue that Cathy Jamieson referred to: the tension between having a clear legal framework of rights and possibly entering into a culture of blame and resort to litigation. I believe fundamentally that if we are to make the case for having patients' rights in a bill, we need the Government's view on how that tension is to be resolved.
Liberal Democrats have no difficulty in agreeing with the Government—as I suspect most members will—that the NHS needs to embrace more explicitly the principles of mutuality. Equally, my party has no difficulty in supporting, for example, the RCN's call to put patient dignity at the heart of health policies, all of which should be dignity proofed. I also have no difficulty with the call by Breakthrough Breast Cancer for patients to be provided with sufficient information
"to keep them informed at every stage of treatment and also in the decision making about their care specifically in terms of who will treat them and where."
The case put by the Long-Term Conditions Alliance Scotland about the need for patients' rights during transition, from child to adult or adult to older people's services, is also well made. Patients have the right to know how and at what level or standard care should be delivered. I share Mary Scanlon's view that staff also have the right to know what is expected of them in delivering care to that level and standard and that the NHS, in its capacity as both an employer and provider, must set out how it will give effect to the rights of patients and staff within the policy framework of the Government of the day.
As I said, I discern no disagreement among members about the need for patients' and staff rights and obligations to be stated more expressly. However, neither do I discern unanimity about how best that is to be achieved. In particular, the case has not been made for incorporating several of the elements in law.
Liberal Democrats draw a distinction—which we regard as important and not merely one of semantics—between, on the one hand, rights granted to patients of the NHS by this Parliament and enforceable in law and, on the other, entitlements granted to patients by the NHS, perhaps by means of a charter, and enforceable through executive action by the NHS.
That is an extraordinarily important distinction, which is why I was disappointed that the cabinet secretary chose to tell us only about the elements of these important rights about which I have heard not a single disagreement. I am not a betting man, but I am almost prepared to wager that I will not hear dissenting voices about the range and extent of these rights as the debate progresses—I will be astonished if I do. What is not clear is what exactly we need to do.
I do not think that it is necessary or appropriate for all of the rights and obligations in the extensive list that the cabinet secretary articulated earlier to be placed on the NHS, enshrined in statute and therefore enforceable in law. As the BMA points out
"The NHS already has a Patients' Charter which has been commended by other countries. Why do we need to enshrine that in law?"
I can see a case for improving and extending the charter, but I still think that the BMA makes a fair point. Indeed, it illustrates its point well, saying:
"If we are looking at legally binding waiting times we need a system that takes into account the whole range of services, not just the ones that are easy to count. You can't easily measure treatment in some areas and we hope this does not create winners and losers. It will be interesting to see how they propose to make this legally binding."
I welcome the debate in the same way as I welcomed the consultation paper. However, it is clear that, although a degree of unanimity is emerging on the range and extent of rights that should be accorded to patients and on the fact that they probably need to be strengthened further, the case has not been made for enshrining the majority of them in statute and therefore giving them the full force and effect of the law. If we are to progress further, we need to devote much more time to that issue.
We must consider three elements: the range of rights; how best they might be given enforcement; and which of the rights might properly be dealt with outwith the framework of the law and which—if any remain—might properly be incorporated in legislation. That is the Liberal Democrat plea to the Parliament: we need to be satisfied about those questions before we proceed to a bill.
As a former lawyer, I thought that the speeches by Ross Finnie and Cathy Jamieson were very thoughtful. There are issues to explore. If we are going to enshrine rights in statute, we must consider whether they are enforceable and not just of paper value.
There is much that we will agree on: the announcement on waiting time guarantees; recognition of the diversity of our population; the issue of suitable transport raised by Jamie Stone, which is particularly important in rural and remote areas; and the significance of communication with people. Issues of communication are often at the beginning of problems that unravel in the health service.
The no-fault compensation scheme will be complicated. I was listening to the comments on that, and with my background I can see that there may be issues with its interaction with common-law rights in negligence cases. No-fault compensation will not always be appropriate; some cases will require to be taken to court to test the liability and degree of negligence and perhaps to change what happens generally in our NHS.
Some of Mary Scanlon's points on infection were off the mark because the common law of negligence will still exist. If somebody goes into hospital and does not receive the professional care that they ought to, the test of the law will still be there. There will still be the common law, although people may have the option of going down the statutory route. We require to explore that, as was mentioned earlier.
My question was what difference will the bill make to the current situation.
As I understand it, patients will have statutory rights and options, but there will still be the common law. If someone went down the route of no-fault compensation, they might have to take the option of not proceeding to court—they could not do both. However, the issues are complex, which is why we must tease them out at this stage of the debate and at stage 1 of any bill that comes before, I presume, the Health and Sport Committee. Some rights might supplant others, and there will be a choice because some rights will be additional to common-law rights.
I want to focus on complaints in the NHS, which is an issue that often crosses my desk and the desks of other members. I completely support Cathy Jamieson's point about complexity. This is about those people who are not articulate or determined. Professionals are all very articulate and can, I am sure, assert their rights in the NHS, but that is not true of the elderly lady who has Alzheimer's, the person who has a mental health problem, someone who has learning disabilities, or someone who is just shy. For a variety of reasons, all those people will not find it easy to complain.
It is not just about the process and the system; people must think that they are entitled to make a complaint without fear of retribution from staff. There might not be retribution, but patients might feel that there could be some comeback, like them not getting a cup of tea brought to their bedside if they complain, so they lie there and say nothing. I have issues such as that.
One bad case in a hospital is one bad case too many. Recently, the papers reported the case of an elderly lady with Alzheimer's who was left in a chair from which she fell and broke her hip; the press are saying that she came home in a much worse state. It is alleged that, because she has Alzheimer's and could not communicate with staff, she was not given proper treatment and, as a consequence, her whole life has been made miserable, as has that of her husband, who is in his late 80s.
There was another recent case of a woman of 64 who was given a needless hysterectomy when she had terminal cancer because there was a 15-day delay in her receiving a magnetic resonance imaging scan to determine whether an operation was necessary. That complaint was upheld by the Scottish public services ombudsman. The consultant gynaecological oncological surgeon who advised the ombudsman said that the case was "quite disgraceful".
Those are unusual cases, but they should never have happened. When Richard Simpson and I recently went on a fact-finding mission for the Health and Sport Committee, we met a young woman who self-harms who told us that she does not go to accident and emergency because of the way she is treated. People there give her the impression that she is wasting their time because it is her own fault. That woman has all sorts of issues, but she will not refer herself to A and E. If that is happening, it is quite simply wrong.
In the current year, NHS Scotland has received more than 7,000 complaints, which is much the same as the number in previous years. Of those, 66 per cent were about staffing and treatment, which is a huge percentage, and 60 per cent of them were upheld. We are looking at a figure of something like 4,000 complaints being upheld in whole or in part. Those are the complaints that completed the journey, and while they might not all involve cases as dramatic and horrendous as some of the examples that I gave, they are too many.
I would welcome it if we could to get to the stage where anyone sitting in a hospital ward, for whatever reason, who cannot take the lid off their cup of tea because they do not have strength in their hands knows that someone will come and help them, or knows that, if they are not helped, they can say something about it without feeling that they are making themselves more vulnerable.
That said, if patients have rights, they also have obligations, for example to keep their appointment or to tell the hospital if they cannot keep their appointment so that they do not waste time. Our society is under an obligation to treat our national health service staff with respect. I am talking not just about the consultant who comes round with his happy band of eager students and automatically gets respect; I am talking about everyone who might pass the end of the bed, including the cleaner, the porter and the lady who brings the jelly and ice cream for the patient's sore throat. They all deserve respect, and I hope that the NHS's culture will change in an atmosphere of mutual respect. That is the point I want to make most of all.
In some respects, I agree with Ross Finnie: legislation can be a heavy tool and is not always necessary. More than anything, what the NHS needs is a culture change on both sides of what should not be a divide, so that patients feel that they are being cared for as individuals, not just as an elderly person, a pregnant lady or someone with mental health problems, and the staff feel that they are there not just to earn their wage but because they have a vocation that society values in all kinds of ways that are not measured by a pay packet.
I welcome the opportunity to discuss patients' rights today. As our health service develops to better meet all our needs, it is right that we take the opportunity to explore how best health care services can serve independent and individual patient needs. That is what people should expect from the health service 60 years on, and we are right to have the debate.
I am sure that we all agree that it is vital that we remain committed to the founding principles and values that underpin our national health service, to ensure that it remains a national service, but we must move with the times to ensure that it meets the needs of the people it serves, and that it does so by meeting patients' expectations and using modern technology and communication techniques to ensure that patients are guaranteed a patient-friendly and customer-friendly experience in all their dealings with it. We live in times when people want to have more say in how their services are delivered, whatever those services might be. Patients deserve and want more say over how their local services are designed and run, and if politicians want to respond to that, we must put the money up front to deliver it.
People tell me that their most important priority for the health service is to improve the patient journey, and to strive always to improve final outcomes for people. I am sure that the opinions of people in Cumbernauld and Kilsyth are no different from those of people throughout Scotland. People are saying clearly that we should work to improve patients' rights, but that the resources to do so should not come from existing health service budgets; there should be additional resources. I hope that the money that the cabinet secretary announced will be enough to meet that need.
Members know that I support the principles of patients' rights, as I am sure we all do. We can ensure that we meet individual needs only through supporting all health care sectors throughout Scotland. Health visitors, community nurses, pharmacists and other allied professionals all have a vital role to play in delivering the best and, perhaps, most personal care and support to patients. I urge the Scottish Government to ensure that any charter enshrining patients' rights in Scotland enables full use of the thousands of talented and well-trained staff that the NHS has, and from whom patients benefit every day. We do not want to see money taken away from front-line patient services to pay costly legal fees; that would not be the priority of the people I represent. Therefore, the cabinet secretary must make it clear how the provisions of the proposed patients' rights bill will be incorporated into the training and education of all health care staff.
More than a year ago, the cabinet secretary pledged that the Scottish Government would consult on patients' rights, including legally binding waiting times, with a view to legislating on the guarantees in the later years of the current parliamentary session. We have all seen the consultation document, but from the discussions I have had, and from the debate this morning, it seems that we are not much further forward. It will be interesting to see what the outcomes of the consultation bring, and whether we really need legislation. Some of the things in the consultation document have already been done and we would expect any caring professional to deliver in the way described.
I move on to how my constituents might be affected. We have a national health service, and people expect to have access to services at the same level throughout Scotland regardless of where they live. My constituency is within the boundaries of NHS Lanarkshire and, for many years, people from Cumbernauld and Kilsyth have been able to access services delivered by NHS Lanarkshire, NHS Greater Glasgow and Clyde and NHS Forth Valley. On behalf of my constituents, I want a guarantee that we will continue to be able to choose where we are treated. If my constituents need acute health care, will they be guaranteed access to Glasgow hospitals? Will my constituents have access to the new Larbert hospital? That was the case and I want a guarantee that it will continue to be the case.
Will the member take an intervention?
I am happy to take an intervention if the cabinet secretary wants to make the position clear.
I make it absolutely clear that nothing in the proposed patients' rights bill would change any of the rights that patients already have. It is important to stress that point.
I am happy to hear that clarification. Nevertheless, I assure the cabinet secretary that changes have been made, whether by design or because of budgetary restrictions.
What will happen to the rights of my constituents who have, in the past, been able to access obesity services in Glasgow hospitals? At the moment, people are being denied access to those services because they live outwith the Glasgow boundary. That is not delivering a national health service, in my opinion or in the opinion of my constituents who are not being treated with dignity and respect and who urgently need to be treated at the clinic in Glasgow. We must ensure that that practice does not creep in in other areas.
The consultation document talks about treating people with dignity and respect. It also talks about providing clear access to the services that people need. We have all been sent a briefing paper this week from the Royal National Institute for Deaf People Scotland, which sets out the specific issues that people who are deaf or hard of hearing face every day. They have difficulties in accessing health services and in ensuring that communications come to them in a clear and understandable form. They have difficulties even when they are sitting in waiting rooms. The normal practice is for the health care front-line service managers or receptionists to call out people's names, but if someone is deaf they cannot listen out for that call—they have to rely on someone being with them or the staff in their local health centre knowing to alert them when they are called to see their doctor. It is important that all NHS staff are trained to communicate with people who have all levels of additional communication needs. A priority in any changes that we make should be to ensure that local general practitioner services are aware of the needs of people from the deaf community.
Another area—
You should be finishing now, Ms Craigie.
The cabinet secretary is aware of the differing waiting times for treatment by audiologists. I hope that that will be addressed.
I hope that people will engage with the consultation document and that the cabinet secretary and the Government will listen. It is important that we get the services right, so that everyone's needs are met and we do not waste money on costly legal fees.
I am sure that all members are rightly proud of our NHS and the dedication that its staff demonstrate daily and hourly in ensuring that it serves the people of Scotland as effectively as possible. In the past 18 months, the Government has ensured that the underlying principle of the NHS being free at the point of delivery has been extended further with the abolition of prescription charges, the ending of paying for parking at hospitals and the move away from private finance initiatives and the difficulties that they can cause in the NHS setting. The idea of a patients' rights bill sits well with the philosophy behind what the Government has set out to achieve in the past 18 months.
However, over the past 18 months—in particular, since I joined the Health and Sport Committee—I have, in dealing with a number of the health professional bodies, been struck by how often the rights of patients are largely overlooked in those bodies' eagerness to promote themselves. Given the vested interests of the different professional organisations in our NHS, I understand that they have important issues to address, but when I am in dialogue with them, I often feel that they do not recognise that the NHS not only exists for the people of Scotland but belongs to them. It is not an extension of any one professional body or collection of professional bodies, and it does not belong to any political party—the Government of the day is merely the custodian of the NHS. There is an issue around the vested interests within the NHS and the way in which the professional bodies within it conduct themselves at times. Enshrining patients' rights more visibly in the law could help to address that.
A good recent example of vested interests making their voices heard by the Parliament is the way in which the NHS boards have been desperate to ensure that the Health and Sport Committee and the Government are aware that they oppose the idea of having elected representatives on elected health boards. It must be the first time all the health boards have been singing from the same hymn sheet in the evidence that they have submitted. However, when I have discussed with my constituents the possibility of their being able to elect representatives to their health board, they have been keen on the idea. It is therefore important that we are prepared to enshrine the rights of patients in law in order to keep in check some of the professional self-interest that can arise within the NHS.
I agree with Cathie Craigie that the NHS must move on because society has moved on. The days have largely gone of a doctor or nurse telling someone what treatment they are going to receive and how things are going to be done and the patient just accepting that, although there is a generational issue—I do not mean to be ageist—in that younger people are probably more assertive in ensuring that their rights are exercised. Christine Grahame does not appear to agree with me, but that is my experience. We believe in the principle of having a written constitution for our country, and a bill that enshrines patients' rights within the NHS is entirely consistent with that.
Like other members, I receive complaints from my constituents that tend to focus on the lack of communication in the NHS and, at times, the lack of respect that is shown to patients and their families. They also focus on the failure of parties within the NHS to take their concerns and views seriously when they are expressed. I agree with Christine Grahame that one of the biggest challenges that we will face in ensuring that a patients' rights bill is effective will be in changing the culture in the NHS.
When the Freedom of Information (Scotland) Bill was passed, it was noted that one of the biggest challenges that we would face in ensuring that people could assert their rights effectively under that legislation was in changing the culture within public organisations. In that context, the role of the patients' rights officer, to which the cabinet secretary referred, will be important. The fact that those officers will be independent is welcome. However, the people who will play an even bigger role are the NHS staff, who must ensure that patients are informed of their entitlements and rights, and must act accordingly. It will be important, when the legislation is introduced, to have a considerable lead-in time to ensure that those cultural issues can be addressed.
I turn briefly to the decision that was announced earlier this week by the Secretary of State for Health regarding top-ups. One of the founding principles of the NHS was that everyone should be treated equally and should have equal access to treatment. The Scottish Government is consulting on the issue, but I must say that, if we are to maintain the principle of all patients being treated equally and fairly, we need to ensure that we do not get into a situation in which a patient is receiving treatment X in one bed while the patient in the next bed is also getting treatment X but with something added because they have a bit more money. That would undermine the philosophy behind not only patients' rights legislation but our NHS.
I firmly believe that enshrining something in law might not necessarily make a great change the day after the bill is passed, but it will ensure that people have the legal rights that they are entitled to and will become more aware of them as a result. Accordingly, I will support the bill when it comes before the Parliament.
There is much to agree with in the aim of ensuring that the rights of patients are uppermost in the minds not only of the health service but of us all. Like others, I support the principle of a mutual NHS, co-owned by the Scottish people and NHS staff, and I sign up to the principles that the cabinet secretary outlined. However, she also said something that I have heard before, which is that patients should be at the centre of the NHS. Those words have been said by successive Governments and ministers, and give shape to an aspiration that we all share. However, what that means in practice—in ordinary, everyday life—can fall far short of our expectations.
I am grateful, as I am sure we all are, that the majority of patients experience excellent services and care from our NHS. We need to acknowledge the hard work of NHS staff at all levels in delivering that. However, for some, the experience is less than optimal. The test, for me, is how the principles that were set out by the cabinet secretary today, and which will feature in the proposed bill, will work in reality. There are three tests of that. Will the proposed bill improve the quality of service? Will it improve relationships? Will it ultimately improve the experience for patients?
Like Cathy Jamieson, I would welcome clarity about which elements of the proposals will be legally enforceable and subject to no-fault compensation. Will it be the charter of rights as a whole, or will it relate exclusively to the new waiting time guarantee? What will be in the charter? Mary Scanlon is right to highlight some of the difficulties that the NHS has experienced, not least among which is the incidence of Clostridium difficile. Will that feature, or will the charter simply be a high-level set of rights balanced by responsibilities?
I understand that any legislation is capable of being challenged in the courts. However, given the cabinet secretary's view about avoiding the need to go to court in the first place, is there consistency of approach in ensuring that no-fault compensation applies to that wider area of the charter? I would welcome genuine clarification of that point.
I am not persuaded about legally binding guarantees. We have achieved significant improvements in waiting time guarantees over the years without the need for legal redress. Successive ministers have driven down waiting times, and I believe that this minister will do her utmost to do exactly the same. However, the cabinet secretary's signalling of priorities might carry more weight in the NHS system than a loosely defined legal guarantee would. I am worried that there might be unintended consequences, despite the positive intention that I acknowledge underpins the bill proposals.
The creation of a framework of rights is something that many in this chamber would instinctively support, but Cathy Jamieson and Ross Finnie were right to ask how that new open framework and mutual relationship will sit with the introduction of a culture of compensation. Will it lead to more litigation? Is it a charter for lawyers? People are worried about the administrative burden. Will it remove money from front-line services? We all know the tight financial position of some health boards, to which that diversion of resources might not be welcome at this point.
Does the member agree that the introduction of a no-fault compensation scheme would considerably reduce the amount of money that is spent by the NHS on court actions, many of which are settled at the door of the court?
I hope that that would be the effect but, obviously, we do not have a financial memorandum. We look forward to scrutinising it. I am merely listing some of the criticisms that have been made and which need to be explored, and I am sure that the cabinet secretary will do so.
More important than those reservations, however, are my original questions. Will the proposed bill improve the quality of service? Will it improve relationships? Will it ultimately improve the experience for patients? I fear that the answers to those questions are, at the moment, unclear.
Patients say to me that they want to be treated safely, quickly and as locally as possible. They are ill, and they do not want to spend time complaining and arguing; they simply want to be made better. Christine Grahame was right to say that many people are unable to complain because they are vulnerable or distressed, because they need assistance to complain or because they are too frightened. I welcome the proposal to have patients' rights officers, but I wonder whether the cabinet secretary has considered expanding independent advocacy services more generally. That would have the same effect, but be more welcome in terms of coverage on the ground.
The involvement of patients is central to improving the quality of services in the NHS and their experience of those services. If patients are to be involved, they need information and support and they need to know what choices they have—choices about where they are treated, choices about the shape and design of services and so on—and be able to exercise those choices when they have all the available information.
The cabinet secretary will be aware that Greater Glasgow and Clyde NHS Board is consulting on service change at the Vale of Leven hospital. I am interested in her view of the weight that will be accorded to the various views that will come forward. What will be the balance between, for example, the views of clinicians and the views of the local community?
Cathie Craigie raised an interesting point about the fact that the default patterns of service provision that are in place—for understandable reasons—limit people's ability to exercise choice. Can the cabinet secretary indicate whether she will review that?
Many of the speeches in this debate, including my own, have contained more questions than answers. Michael Matheson was right, not on his point about age—he and I are slightly younger than other members of the Health and Sport Committee, and I would not dare to suggest that Christine Grahame and others are significantly older—but about vested interests and the need to create a better balance in that regard. In that context, patients' rights matter absolutely. We need a better balance between the rights of patients and the rights of those who are perceived to have vested interests. The best way of ensuring that those rights are given real meaning remains unresolved, however. I am not yet convinced that legislation would be the best way of doing that, nor am I convinced that introducing a compensation culture would necessarily be an advantage. However, principles that we can all support have been mentioned in the debate. I hope that, in doing so, we take forward a new era of patients' rights in Scotland.
Members will know—perhaps to the point of boredom—about my background in the health service. However, I have not previously discussed my mercifully short contact with the health service as a patient. My only admission to hospital is still a cause of some embarrassment many years later, as I am the only male I know of to be admitted as a patient to a maternity hospital. I will not go into the reasons why: suffice it to say that the satisfaction survey that I was given to complete at the end of my stay seemed to be irrelevant in certain important respects.
More recently, I embarked on the hazardous adventure of partnering my mother-in-law at a Scottish country dancing class—sadly, unfortified by alcohol. The result was a ruptured Achilles tendon and an urgent visit to the local orthopaedic department, where the doctor asked, "Do you want me to sew the ends together, or do you want to be treated conservatively?" I responded by asking, "What would you do in my place?" A cunning look appeared on his face, and he said, "I would assess the evidence and decide accordingly."
That story illustrates the gap between the theory of what patients want and the true situation. Correctly, we emphasise the right of a patient to be involved in treatment decisions. I had that right, but when it came to the crunch I simply wanted the best advice from an experienced practitioner. Because I am a doctor, I was able not only to perform a computer search regarding the treatment of my injury, but also to weigh up the merits of one approach versus another. However, not every patient has a medical degree.
In my case, the specialist could tick all the boxes regarding patient empowerment, but was that the help that I really needed? There is an increasing divergence between how the health service is run in England and how it is run in Scotland. In England the model is increasingly to see the patient as purely a consumer. What is important is that the patient is offered choice—choice as to where treatment is offered and, in many instances, whether it should be provided by the NHS or by the private sector.
I disagree with that emphasis for many reasons, but today I will concentrate on one of them. How does the individual, who is often suffering from the effects of an illness, know enough about all the factors to make an informed choice? There is a danger that in this matter, too, political correctness will stand in the way of satisfying real need. In Scotland, we increasingly regard the patient not only as a consumer of the NHS but as a person who also jointly owns the service. In the words of the Long-Term Conditions Alliance Scotland, a patients' rights bill should achieve a
"cultural change away from the traditional model of people as passive recipients of NHS services".
I could not agree more, but as other members have said, with ownership comes responsibilities. Most people prefer us to concentrate our energy and resources on improving local NHS services rather than offering token choice or giving more profit to the private sector. However, individuals have a responsibility to take steps that help to utilise precious resources to the full. It is not unknown for some hospital outpatient clinics to have a no-show rate of 40 per cent or more, and all general practitioners will tell you how many appointments have been missed in the past month. How can we get waiting times down further if resources are wasted on such a scale?
Medicines are another significant cost to the NHS, yet many are not taken according to instructions and some are not taken at all. If we are all partners in a mutually owned health service, it is up to us all to do our level best to run the service efficiently. If we all gave up smoking, ate more sensibly and took more exercise, we might not need the service so frequently.
Although it is important that the patient has a right to a speedy and efficient complaints procedure when things go wrong, it is also right that all of us, as actual or potential patients, should have a say in how the service is run. We need to be treated with respect, not only as patients but as the people who pay the wages of staff in the service, buy the equipment that they use and pay for the new hospitals in which they work.
Let me tell another story. Some years ago, I looked after an old lady in her final illness. Her grateful daughter came to thank me for the care that I had given and, as she left, she slipped a large parcel out of her shopping bag and shyly presented it to me saying, "I am sure you'll know what to do with this, doctor." I took the gift and replied, "Oh, there's no need for that. I was only doing my job", only to find, after she had gone, that the parcel contained almost all the medication that I had prescribed for her mother in the past year, totally unused. It is not just up to patients to see that the health service runs efficiently.
I finish by replying to the cogent point that Ross Finnie, my colleague on the Health and Sport Committee, made in his opening speech. Should the rights that we are talking about be enshrined in law or should they be part of an extended national health service charter? That is a good question that we need to discuss more, but the point that I would like to make to Ross Finnie is that, from my experience of the national health service, an awful lot of patients sadly no longer trust it to investigate and look into the problems that arise and which could be dealt with under a charter. My feeling now, although I am happy to listen to further argument and discussion, is that a bill of rights for patients will help to redress the balance and allow our patients to be confident that they are receiving the service that they deserve and for which they pay.
I have listened to the debate with great interest; it has been extremely informative for a layman such as me, who is no medical expert. I thank the Cabinet Secretary for Health and Wellbeing for outlining, in detail, the intent of the proposed bill and the way she sees developments going, although I do not necessarily agree with her any more than my colleague Ross Finnie does.
I will pick up on one comment that was made by the cabinet secretary, which I thought was useful and struck a chord with me. She referred to patients wanting
"an assurance that lessons have been learned".
We must surely encounter that in all our dealings with constituents who have problems with the health service. Many of them say to us, "It's not about me—I want to ensure that it doesn't happen to somebody else." In going back to those constituents, it can be difficult to provide such an assurance. If we can empower people in that direction, that will be all well and good.
Cathy Jamieson set out the arguments that have been repeated again and again on whether we should go down the legal route. She is right that we need to see the financial memorandum to the bill to see what will happen. As Cathie Craigie asked, will it be about taking money away from front-line services and paying for legal fees? None of us in any party could possibly agree to that. That will be the acid test.
Mary Scanlon made a thoughtful speech in which she rightly gave us the history of the patients charter, which was introduced by a Conservative Government. She also pointed out that only two paragraphs in the consultation document mention no-fault compensation.
Mary Scanlon also touched on the rights of NHS staff and the issue of consent to future treatment. I have a constituency case, which I will not discuss in detail, whereby an elderly lady has been receiving treatment for cancer. The treatment is, in the clinician's view, the most appropriate treatment. Of course, there comes an end point to the treatment. She has two sons who disagree totally with that and have involved me—and, I am sure, list members from the Highlands—in a letter-writing fiasco, if I can put it that way, which has become far removed from what is best for the patient and is more about particular individuals having a grievance against the health service. When matters reach that point, they become grotesque in the extreme. I therefore think that consent to future treatment is an issue on which we must keep a very close eye.
Christine Grahame rightly referred to the common-law rights that currently exist. Echoing Mary Scanlon to a degree, she also mentioned patients' rights and their obligations to staff—Dr Ian McKee referred to the number of appointments that are not kept. Christine Grahame also mentioned ice cream and jelly. I do not expect that to be mentioned in a bill, but it is true that the porters, the cleaners and the people who scrub the toilets deserve recognition every bit as much as the man with "Dr" before his name.
I have already referred to Cathie Craigie talking about money going to front-line services rather than to legal fees. In Michael Matheson's far-reaching speech, he made the point—not one that I particularly agree with—about the importance of staff informing patients of their rights.
Jackie Baillie asked about what will be in the charter and whether C diff will be included. That will be the acid test of what the charter is all about. She also asked about the best way of ensuring that those rights are observed and protected.
Ian McKee's speech, which was one of the best speeches that I have heard for a long time in the chamber, was amusing and thought provoking. He brings to our attention the question whether it is just political correctness to say that patients have the right to discuss decisions with the doctor or to overturn them. Nicola Sturgeon, among others, made the point that a patient goes for treatment in order to be made well. I, for one, tend to respect the doctor or consultant's opinion. I admit that I know nothing about medicine, so God knows why I am speaking in the debate, but there we are—I have bags of common sense.
I will never forget Dr McKee's reference to being admitted to a maternity hospital. He might like to tell us in the privacy of the coffee lounge what that was all about. I am sorry that he hurt himself doing Scottish country dancing. He illustrated what lies at the core of the debate.
I return to Ross Finnie's comments. The issue is how we ensure that the rights of patients and staff can be dealt with and honoured without going to law. As I and others have said, it would be very bad if any NHS money, which is so precious and is about making people well, was spent on paying legal fees. That would be grotesque in the extreme.
I turn to my constituency. As members will appreciate from my intervention on the cabinet secretary, the issue of distance and access is crucial to my constituents and people in other Highland or remote parts of Scotland. Coming from where I do, when I consider what is meant by patients' rights and what is proposed, it seems to me that the test should be whether people will have easy access and their loved ones and family will be able to visit them when they are ill in hospital.
This has been an interesting short debate on the consultation on which the Scottish Government has embarked. In opening for the Conservatives, Mary Scanlon asked some important questions about where the proposed bill sits in relation to the set of commitments for action in the 2007 SNP manifesto. Is it an amalgam of the two bills that were envisaged? Why, as Mary Scanlon pointed out, is so little or nothing about redress to be asked of so many in such a wide consultation on such a profound measure?
The consultation invites contributions under a number of headings, all of which have been well aired in the debate. This is as good an opportunity as any to throw in my own tuppenceworth on a matter that is regularly raised with me and of which I have personal experience. I suppose that, although trivial, it falls within the respect remit. It is to do with the use of names. So many people tell me, following a stay in hospital, that the instant use of given names rather than plain Mr or Mrs is a ghastly indignity and a characteristic that is shared by the NHS and pushy, unsolicited telephone salespeople.
Why has the convention become established? Why, when many people instinctively feel that the use of their given name is based on a shared confidence, affection or acquaintance, are their wishes assumed or cast aside? Why should they lose control of this basic dignity as though they were back in primary 1, being told that what will be will be—or is that the point? Does the unauthorised use of given names emphasise the institutional nature of the establishment to which they have been admitted?
I know from experience that the practice is haphazard because the correct given name is rarely sought. Although I have been called Jackson from birth and that has always been my given name, my first name is actually David. I continue to use it on all official documents and it is a comfort to know that, when an individual assures my mother, friends or colleagues that they are David's personal friend and confidante, that person is clearly up to no good. However, it is as David that I have been known when in the bosom of the NHS during my admissions to general wards in the past decade. As it happens, I would gladly have volunteered to be called Jackson, because I am not bothered about being called Mr Carlaw, but I was not asked, so in a small anarchic way I let it be and was called David throughout my stay.
However, the approach can add to the trauma of others, particularly the elderly, many of whom find themselves in the same position as me, being called by their first name rather than their given name. An elderly friend, who is now deceased, was called Joan all her life, but she suddenly found herself being called Florence at a confused stage of her life when she was admitted to hospital, as if all the world called her that all her days. In another case, I was told that, as the only name on the file was the person's first name and it did not mention their given name, that was how they would be addressed.
The modern convention of assumed familiarity is certainly prevalent, but it is not necessarily dignified. It might be profoundly important to an individual according to how they define respect. Should the approach be defined in law? Hardly.
Mary Scanlon mentioned the Conservatives' patients charter of 1991 and others mentioned the Labour Government's 1998 follow-up to that. Those charters did not establish rights and responsibilities within a legal framework. Although the consultation's constant theme is the detailing of patients' rights, accompanying that are stated patients' responsibilities.
Under "Access", it states:
"Patients will be responsible for:
attending agreed appointments."
Under "Respect", it states:
"Patients will be responsible for:
treating staff with dignity and respect; and
not physically or verbally abusing staff."
Under "Safety", it states:
"Patients will be responsible for:
complying with advice on medication and treatment; and
raising legitimate concerns about the safety of their care."
Under "Communication", it states:
"Patients will be responsible for:
providing information about their history, current treatment medication and alternative therapies directly or through their family, carer or other nominated supporter;
informing their healthcare provider of any changes in their condition; and
taking part actively and constructively in discussion and decisions about their health and health care."
Under "Information", it states:
"Patients will be responsible for:
seeking and using information appropriately to support their own health, for example to enable self-care for minor conditions; and
ensuring that they have the information to understand what they need to know about their care, and to provide consent to treatment."
Under "Participation", it states:
"Patients will be responsible for
asking for further information if there is any uncertainty about their care;
giving informed consent or not; and
participating constructively in decisions about healthcare and service where they wish to do so."
Under "Privacy", it states:
"Patients will be responsible for:
providing the information that is appropriate and relevant to treatment of their condition."
Under "Independent Support and Redress", it states:
"Patients will be responsible for:
offering feedback on their health services in a positive way as far as possible."
I quoted those responsibilities at length simply to illustrate that, if we strip out the rights, we are left with the most comprehensive and stringent set of patients' responsibilities—indeed, we are left with a pretty draconian patients' responsibilities bill
I have noted regularly in recent debates that the NHS is not an insurance policy in the normal sense. I have talked about leaving the house doors and windows open, being burgled and then finding that the insurance company is not inclined to pay. I have noted that, in the final analysis, no penalty exists within the NHS, so I suppose that I should welcome the responsibilities, but what do they mean? If a patient does not follow
"advice about … suggested lifestyle changes",
fails to provide "information about their history" or is unable to provide knowingly
"information that is appropriate and relevant to treatment of their condition",
what will happen? How will that be reconciled with the desire to tackle inequalities? Will the patient be sued by the health board or denied further NHS treatment? Will there be a new sanction in law? That is surely inconceivable, but if there is not, what will be the legal and practical purpose of a bill that seeks to establish legal frameworks? In contrast, the existing charters can be updated without the need for primary legislation.
I applaud Cathy Jamieson's cogent analysis of the value of legislation with regard to the package of rights—on which I have not dwelt—over and above the existing charters. I sat spellbound—that is the word that I wrote down, anyway—as Ross Finnie encapsulated those arguments as well.
It is as well that there is a consultation, for there is much to consult about. We await the responses with interest and we will scrutinise the Government's subsequent proposals with care. Legislation begets unintended consequences and we will look to establish what they might be.
The debate has been consensual as far as the concept of patients' rights is concerned, but it has not been consensual on whether the argument for legislation on the matter has been appropriately and fully made.
David Carlaw went on at considerable length about names. That might have caused some amusement, but it conveyed two things. First, the question of names is a matter of dignity, and, secondly, it is a matter of hierarchy and power within institutions. Names are important in that regard, so his point was well made.
Mary Scanlon made a number of important points. If we introduce statutory waiting time guarantees and legal obligations, the unintended consequences will be substantial. She addressed mental health and referred to infertility and addiction, and Cathie Craigie mentioned audiology and deafness. If the bill is to take a non-discriminatory approach—it will be challenged by the Health and Sport Committee on that issue—it must ensure that all patients have equal rights, regardless of their condition. That will be a major challenge for the Government. I know that it is considering the mental health issue, but there is serious discrimination against mental health patients. If statutory guarantees are imposed for one set of conditions, health boards will apply money to meet those guarantees at the expense of other patients. That is already happening. It is a major challenge for the Parliament to ensure that we do not have discrimination.
A number of members mentioned the unintended consequences, which are potentially legion. I will give an example. A GP refers a patient to a consultant, who then refers them to a physiotherapist and asks to see the patient at the end of the physiotherapist's intervention. In that case, the treatment guarantees will apply. However, if the patient is referred directly to the physiotherapist, there will be no guarantees even though the condition might be the same. Furthermore, if the consultant does not ask to see the patient at the end of the physiotherapy treatment, the guarantees will not apply.
We are dealing not with simple issues but with the complexities that will be inevitable if statutory guarantees are introduced. I remain unconvinced on the issue. We will see whether the arguments are made more effectively in committee and in the consultation responses, but I do not believe that they were made effectively today.
I offer the chamber another example. England has just announced that, within two hours of a coronary heart disease event, 90 per cent of all patients will get a primary intervention. With our geographical spread, such a target would be a lot harder to achieve—90 per cent would probably not be achievable. If such treatment is required within two hours, will we give patients a guarantee? If we do not give that guarantee, are we saying that they are not entitled to that treatment when it should be available?
An absolutely fundamental issue that has not been raised today is that, for a lot of patients, managing a long-term condition is more important than—or as important as—treating an acute condition. Therefore it is the patient pathway, to which some speakers referred, that is important. As the Labour Party said in our manifesto and in subsequent discussions, we need personal contracts with individual patients so that they agree to what is practical and possible for them. The alternative, which has been explored by some speakers today, is that we end up in a situation in which we might have draconian patients' responsibilities, as Jackson Carlaw said. I will return to that in a minute.
I hear what the member says about the responsibilities that might be put on a patient, but I think that he will agree that those responsibilities would not be the same for each individual but would depend on their capacity to engage with such responsibilities.
I would agree entirely, if what Christine Grahame suggests is what really happens. However, there are doctors out there who say that one should not treat patients who smoke if their condition is a consequence of their smoking. I disagree profoundly with that approach, but I promise Christine Grahame that there are doctors who believe that. Unless one defines such responsibilities, there could be difficulties.
Independent support, to which several speakers referred, is important and I very much welcome what has been said. Christine Grahame talked about the complaints system, with 4,000 out of the 7,000 complaints submitted being upheld. Having a system of no-fault compensation in the proposed bill is alluded to in the consultation but not dealt with in any detail. As Mary Scanlon remarked, such a system would be fundamental in changing the culture. As a doctor, I can tell members that at present, if a doctor does something that might not be appropriate and the patient makes a complaint, the Medical Defence Union will often tell the doctor not to say anything, because the matter might become a legal case. There is a culture of not saying things when, as Jamie Stone said, often patients just want a reasonable explanation of what went wrong and an assurance that it will not go wrong again. Although my party does not have a position on the issue, my personal opinion is that no-fault compensation could be very helpful.
Given that you are a medical professional, I ask you respectfully for your views on the unintended consequences of a patient being entitled to withdraw consent and refuse further treatment.
Members should make their remarks through the chair.
I do not want to get into that question today, but I will refer to consent and its withdrawal. If the bill is enacted, we will have to relate it to the Adults with Incapacity (Scotland) Act 2000 and consider the situation carefully.
We all want genuine choice for patients, but as Cathie Craigie said, that has to be approached carefully. If patients are offered the opportunity to go to one hospital but wish to go to another because they prefer the surgeon or the reports on hospital-acquired infections from that hospital, or because they have relatives nearby who might support them, will they lose their guarantees? The matter is difficult and complex.
We need a culture in which patients who raise concerns about their treatment are welcomed and not treated as a problem. I have cases that relate to hospital-acquired infection. In one case, a patient who intervened because the staff had not washed their hands was treated unpleasantly. That culture has to change. Although the cabinet secretary cannot change it, the Parliament, together with the cabinet secretary, can make it clear that we want to change the culture.
I do not have time to address all the remaining issues so I will finish by saying that there has to be a balance between a charter—rights that the Parliament indicates are appropriate for patients—and a legal framework. That is the main point to come out of the debate.
Medicine is not a product like a car with a guarantee that one can hold over another individual if things go wrong. Medicine is very complex and the choices that have to be made between one treatment and another might not depend entirely on a strong evidence base. Ian McKee's illustration of being offered alternative treatments for his Achilles tendon was valid. To ask patients to make such a choice is wrong; one should discuss with the patient the benefits and risks of each treatment and then, in partnership with the patient, agree what treatment to use. We in this Parliament should foster that concept of partnership. If we pitch one set of rights against another, it might lead to unintended consequences that will not help to improve the quality of care for patients.
I begin by genuinely thanking all members for their contributions to today's quality debate in which some serious points have been made.
The issues that have been raised are undoubtedly those that will require full explanation in the course of the consultation. I will avoid as far as possible in my summing up the temptation to take fixed positions on all the points that have been raised because at the heart of this debate are not only serious, practical questions but serious philosophical questions. It is right that the Parliament airs those issues and works through them during the consultation and thereafter.
I said that I would not take fixed positions on all issues raised today, but I will take fixed positions on some. To my esteemed colleague Christine Grahame I confirm that the bill will not enact the right to ice cream and jelly in every hospital; I believe that they should be provided as a matter of course anyway. To Ian McKee, I say that the bill, if enacted, will certainly not enshrine his right—or that of any man—be admitted to a maternity hospital anywhere in Scotland. I am sorry if that brings great disappointment, but I am sure that my colleague will live with it.
In the few minutes available to me, I will respond to some of the comments that have been made and then I will address what I believe to be the key philosophical question at the heart of the debate, which has been referred to by many members.
I very much welcome the broad support that Cathy Jamieson expressed for the intention and objective of the bill. I also welcome her constructive criticisms and suggestions about how we could improve our proposals. As with all members' suggestions, they will be reflected on properly during the consultation.
Cathy Jamieson also raised issues around the proposed waiting time guarantee. She said, rightly, that any legislation, particularly in an area such as the one that we are discussing, must be appropriate and proportionate. I believe that what we propose is both: it focuses on a vital stage of the patient journey; and it would avoid the possibility of lengthy waits in exceptional circumstances.
Cathy Jamieson, Mary Scanlon, Cathie Craigie and others raised an important point: because the existing waiting time guarantees do not apply to all patients and treatments, giving a legal guarantee to some patients would create an inequity. Of course, that inequity exists in the current waiting time guarantees, which is why the Government is considering which further groups of patients can be brought within those guarantees. Cathie Craigie will be interested to know that we have already taken the decision to bring audiology services within the guarantees and, as Richard Simpson said, we are looking at the possibility of including mental health services. No doubt our consideration will go beyond those areas in due course.
Cathy Jamieson also spoke about the complexity of the complaints system, and I agree with her. That is why we have proposed independent patients' rights officers, and I believe that it is important to give such posts statutory force.
No-fault compensation was raised by a range of members, including Cathy Jamieson and Mary Scanlon. I reiterate the Government's commitment to the principle of no-fault compensation; I also reiterate my recognition of the considerable practical, legal and financial considerations that have to be addressed in the debate. If we can address those issues, I will be happy to consider including in the bill proposals for no-fault compensation. However, because of the complexity of the issue, we may need to conduct a separate exercise. I was struck by Cathy Jamieson's suggestion that we establish an expert group, not least because I have been giving consideration to that. I will reflect further on her comment.
I will touch briefly on the issue of responsibilities. It is right that we stress responsibilities as well as rights. However, to be candid, it is much more difficult to place patients' responsibilities in law than it is to place patients' rights in law. Like Richard Simpson, I disagree profoundly with the view that a patient who drinks or smokes against advice should not be given the same rights to treatment as any other patient. There is merit in a personal contract approach to enshrining responsibilities as well as rights.
Mary Scanlon raised the extremely important issue of NHS staff. We can never do enough to ensure that our staff are properly respected. NHS Scotland has a system of partnership working and a staff governance standard that are world leading in many respects, but we should always do as much as possible to ensure that the rights of staff are respected.
I turn to the central issue that was raised by Cathy Jamieson, Mary Scanlon and, principally, Ross Finnie. I refer to the apparent tension between putting in place a legal framework and avoiding—as we all seek to do—a culture of blame in the NHS. I have reflected hard on the matter and will, no doubt, continue to do so. That culture of blame often comes from a lack of clarity and understanding of what a patient's rights are, how they can ensure that those rights are delivered, and what they should do to get appropriate redress when things go wrong. The intention behind the patients' rights bill is to ensure that there is no dubiety about what those rights are. It should be backed up by a charter of mutual rights that makes clear how rights will be delivered in practice. As with any statutory right, the ultimate sanction is access to courts; as Christine Grahame said, any statutory rights would be in addition to the common-law rights that patients already have. A legal framework that works effectively will reduce the necessity for patients to seek redress, because giving patients' rights statutory force will help to ensure that they are delivered properly in the first place.
Will the cabinet secretary assure us that mediation will be considered as part of the process?
I am happy to do so. The essence of what I am saying is that I believe that putting rights in statute will help us to change effectively the dynamic of the relationship between the patient and the NHS. Michael Matheson was absolutely right when he said that this is about changing the culture. Such a change in culture will allow a patients' rights bill to pass the test that Jackie Baillie set of improving quality, relationships and experience. If we combine it with a no-fault compensation system, there is a real possibility of reducing the likelihood of patients accessing the courts. That is the philosophical debate at the heart of the issue that we will continue to pursue in the consultation.
Finally, I will address the issue of patient choice. Jackie Baillie was right to say that there are established patterns of service delivery, which is as it should be. Patients will almost always exercise the choice to be treated as locally as possible—that is why it is important to retain local services, where possible. However, patients can already choose where to be treated. It is reasonable to ask whether that right should be enshrined in statute—the issue should be considered in our discussions. Richard Simpson was right to point to the patient pathway and the importance of treating long-term conditions as well as acute conditions. I am pleased to see that the Long-Term Conditions Alliance Scotland has welcomed the approach to patients' rights that we have taken.
I have enjoyed today's debate, which has been illuminating and informative. I look forward to that constructive approach continuing when we confront some of the complex issues with which we are dealing, as all Parliaments have a duty to do, and reach conclusions that are in patients' interests.