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One of the problems with which the Minister may be wrestling is the dual role that carers play, because they first of all are patients of the NHS in their own right and have rights in that respect. We should remember that three-quarters of all carers—there are 6 million of them, as I do not need to remind your Lordships—report that their own health, physical, emotional or mental, is adversely affected by the caring role. So they have great needs as patients. However, they then have a second role as suppliers of care. Healthcare does not take place in a vacuum; nor does it take place in hospitals or surgeries, as we might be forgiven for thinking if we listen to some of the debates in your Lordships' House. Healthcare takes place largely in your own home, provided by yourself and your family and to the value of £87 billion, which is very nearly the cost of another health service.
So carers play sometimes confusing roles which are often even in conflict. I make no apology for reminding Members of the Committee of the case that I quoted at Second Reading of the woman who had bowel cancer several years ago. The NHS provides her with excellent follow-up care, which requires her to have a colonoscopy every year. As someone who has that treatment, I know that it lays you out for a couple of days. This woman cannot take that opportunity because she cannot find anyone to care for her husband while she has the treatment.
We need to take very careful account of those kinds of conflicts when we consider carers. Not including them in consultation denies them an opportunity to consider their role, not only as patients in terms of what they need but in terms of what they can contribute. I hope that the Minister will acknowledge that they cannot just be regarded as being in that catch-all term, “the public”. It is logical, consistent and desirable to include carers and I hope that the Minister will do so.
I support what the noble Earl, Lord Howe, said about specialist services. I speak in my role as chair of the Specialised Healthcare Alliance. These services may not be known to many people in healthcare but they constitute 10 per cent of what the health service provides and, as the noble Earl reminded us, often serve people in very great need. We have to think about specialised services as well in this context.
Lord Campbell-Savours: I am, as ever, somewhat confused and find it difficult to understand why a Labour Government have trouble on occasions in using the words “trade unions” in legislation. A number of pieces of legislation have gone through Parliament in recent years which refer to “staff”, but we are never absolutely specific. I am not saying that we should identify any particular trade union, but we should be a little more adventurous in the language we use. There is a generic heading, “staff”, in Clause 3(5)(b), whereas in Clause 2(2), paragraphs (a) to (g), there are listed,
“Strategic Health Authorities ... Primary Care Trusts ... National Health Service trusts ... Special Health Authorities ... NHS foundation trusts ... the Independent Regulator ... the Care Quality Commission”.
Those are specific areas of managerial operation and administration, but trade unions are not included.
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My Amendment 18 would include in this process of consultation trade unions and professional organisations representing staff. I propose the amendment following my usual discussions on this Bill and similar Bills with UNISON, a trade union with which I have quite a lot of contact but no pecuniary or financial relationship whatever. I should make that absolutely clear.
UNISON, which was formed from three trade unions, NALGO, NUPE and the Confederation of Health Service Employees, will be in the front line in implementing many areas of this legislation. I should have thought that Ministers would have had immediately in mind the need to consult trade unions, particularly in this area of the Bill which deals with the review of the constitution.
UNISON supports the introduction of the constitution and believes that it will help enshrine and protect the NHS’s vital core principles and responsibilities. The union welcomes measures in the Bill that ensure that every organisation and staff member working within or on behalf of the NHS will have to adhere to the constitution and its accompanying handbook. Ideally, UNISON would want implementation of the constitution to be covered in the contractual relationships that the private sector has with the National Health Service. It is vital, in the union’s view, that the Bill covers all models of provision. It emphasises that a two-tier adherence to the NHS Constitution and handbook must not be possible, now or in the future in particular.
The union agrees that the constitution must remain a relevant document but that it is right that the main reviews take place only once every 10 years. It believes that this will help to focus the constitution on long-term priorities and ensure that it remains above shorter term political debates. The union welcomes the specific naming of staff as a statutory consultee for any changes. However, it would like assurances that employee representative organisations, such as itself and including trade unions, will be specifically consulted as part of any review process.
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The union believes that revisions to the handbook should focus only on the technical detail necessary to make sure that the rights outlined in the constitution reflect the most recent legislative terminology and organisational forms and not other matters. The more aspirational pledges within the constitution should be revisited only in the 10-year review envisaged for the actual constitution. While not wanting to make the handbook review process too cumbersome, it would like assurances that key stakeholders, including staff and patients—I do not like the word “stakeholders” but I am using it today—are involved with proposed revisions to the NHS handbook if they go any further than technical amendments.
On Second Reading, my noble friend gave some assurances that such organisations would be consulted with. However, the union would be keen to see these assurances in the Bill. They should be, and we should not duck what I believe is a Labour Government responsibility.
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Baroness Cumberlege: I have put my name to one of these amendments concerning carers. Critical to the success of the NHS Constitution is to recognise how people perceive it, use it and, indeed, how the staff wish to work in it. After 10 years we really should have some sort of an indication about how effective it is. Therefore, I am very pleased that the Government will consult when undertaking this 10-year review.
I want to say a few words about consultation. Years ago it was highly valued, but it has always been used as a proxy for giving people some influence over policy in a huge and centralised monopoly-run service. That is one of the ways that we can try to get people to have some influence. Over the years, we have consulted on so much that it is losing some of its force. Indeed, some people today tell me that they have consultation fatigue as they are consulted on nearly everything that comes out. Certainly, it is often thought that it is a piece of bureaucracy that the NHS has to go through. Local organisations perceive that the decisions have already been taken and that this is just some exercise that takes three months and has to be gone through.
In the commercial world, as a customer you can usually walk away and find another provider, be it a supermarket or a private healthcare provider if you can afford it. The business soon knows whether its product is valued. It has to balance the books. If it does not, the business simply goes out of business.
The user has little influence in the current NHS. Consultation seems to be the only tool to involve people in policy decisions. In time, perhaps direct payments, which we shall discuss later, will make a difference. Until direct payments are established and we see the result of them, we have to fall back on this rather barren process of consultation.
I am sure that the noble Lord, Lord Darzi, will say to me, “Hang on a minute”; when he was drawing up his document High Quality Care for All, he took enormous trouble to consult widely. Moreover, he set up structures across every NHS region in the country to get the views that were incorporated into the overall policy. I read in the Second Reading debate that the noble Baroness, Lady Emerton, said how much pleasure working with some of these groups gave her. I have heard other staff say that they felt it was a valuable exercise. It was a massive exercise. It was very well thought out and structured, and it was expensive in time and money, but it was effective because the noble Lord listened and acted on the views expressed. Of course, the views were not unanimous, but they never are when you go out to consultation.
I am saying not that consultation never works but that it does not work very often, and that is particularly true when it comes to fraught issues such as closing local services. I think that the time has come when we have to seek some alternative methods of empowering patients and the public, but at the moment we have to go with what is on offer.
Although I have enormous sympathy with a number of the bodies suggested in the amendments, I attach my name particularly to carers, principally because I am working with carers and because I am one myself.
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The noble Baroness, Lady Pitkeathley, mentioned the 6 million or so who literally give their lives for years on end to care for someone else, and often it is not a choice but a duty. They are the heroes of our society and we should give them all the help that we can. Knowing their rights as set out in the constitution will, I think, help. In 10 years’ time the world will be different and their input in revising the constitution will be of considerable value. They have first-hand knowledge of the strengths and weaknesses of the NHS and they should be listened to.
In recent years, we have included the word “public” when talking about patients—patient and public involvement, or PPI. It may have been the noble Baroness, Lady Pitkeathley, who said that when this is mentioned it is usually followed by the plaintive little cry, “How about the carers?”. Could we adopt the phrase “patient, public and carer involvement”, or PPCI, as part of our regular terminology? That seems to me to be very simple. Words are important. They frame a mindset, and PPCI would become as natural to us as PPI. It would ensure that carers were always included, as they are not patients. Some are patients in their own right but, in this context, they are people who care for others and are not mere members of the public. I think they should have a distinct status in our society and in the legislation that we draw up.
Lord Walton of Detchant: This is an exceptionally difficult and complex issue. It is clear that in relation to any review of the NHS Constitution local authorities must be consulted. All noble Lords who have contributed to the debate on this group of amendments have spoken very persuasively and with expertise based on their personal experience. Plainly, it is important that carers should be consulted as well as trade unions and professional organisations representing staff, as the noble Lord, Lord Campbell-Savours, said. Clearly, all these individuals have an abiding interest in the National Health Service, in the constitution and in any revision that may be developed in future.
Incidentally, the noble Earl referred to the BMA. It is not widely known that the BMA is a registered trade union, although it is not affiliated to the Trades Union Congress. The BMA and the Royal College of Nursing might be included but what about physiotherapists, occupational therapists, medical technologists and clinical psychologists? In the light of what we said about the crucial importance of the NHS in relation to educational issues and research, what about the Association of Medical Research Charities, the Medical Research Council, the General Medical Council, the bodies concerned with the education of nurses and the Health Professions Council? One could go on and on. We are in serious danger of going back to the question of developing a list.
I sympathise with the Minister about the challenge with which he is faced. These are very important issues and the organisations referred to are vital to the future
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Baroness Howarth of Breckland: My friend the noble Lord, Lord Walton, is as usual highly eloquent but, as it is, we already have a list. The list is here. Many of us would make a particular plea for one specific set of amendments—Amendments 16, 20 and 31—about carers. We make that plea partly because this Government have done so much to ensure that carers are now seen but also because of the particular role that carers play in supporting the health service. I speak as someone who previously might have thought that I know what other members of the public might have done, despite having had elderly parents and all the care that goes on through life. However, recently I became the carer of a cousin with Alzheimer’s in Sheffield, and am trying to find my way through an extraordinary maze of health and social care, by which even my expertise is totally defeated.
Carers carrying out those sorts of tasks, with that sort of experience, should be consulted because they have a relevant, direct insight into what works and what does not work. That is particularly the case with some of the things that the noble Baroness, Lady Barker, was saying earlier—how social care and health care fit together. Unless we have carers in this list, they may well be seen as ordinary members of the public. I feel very different as an ordinary member of the public who happens to be linked to St Thomas’ Hospital through the LINks programme, because I am a user of St Thomas’ Hospital, from how I feel as a carer trying to find my way through the maze of the services 200 miles away from someone over whom I now have lasting power of attorney, his wife having died and since he has no other immediate relative.
I support what the noble Earl, Lord Howe, said about specialist services. I alluded to that briefly early on in these debates, because those services often get forgotten. I declare an interest as the patron and trustee of an organisation called Little Hearts Matter, which deals with children with hypoplastic left heart syndrome and other “half a heart”- type difficulties. Those specialist services are utterly crucial, not only to the well-being of those children but to their very lives, with the oldest being only 18 and all children before that having died. Unless those specialist services are properly consulted and properly represented, those families will find that they do not have the kind of services in which they can have confidence. They do not want it next door; they want the kind of service that will meet their needs.
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With all the understanding about lists—and I have views about that—I think that carers are an exception. Somehow we must ensure that specialist services are properly consulted.
Baroness Masham of Ilton: I very much support the noble Earl, Lord Howe, on specialised services. I declare an interest as someone with a spinal injury. I have Amendment 126, which relates to services for spinal injury patients, which are in an absolute crisis situation at the moment because there are not enough beds. The specialised services include those with rare conditions, and there are many of them. There are rare cancers, rare neurological conditions, rare heart conditions, rare muscular conditions and rare conditions in children—and there are many others. They sometimes have to travel for miles to get the services they need. Many of them are on orphan drugs.
All this can deal with the commissioning of services, which is becoming exceedingly difficult. For example, some of these patients have a problem with borders. A patient who lived in Wales, one mile from the orthopaedic hospital in Oswestry, was not allowed to be sent there; he had to go to Cardiff. Think of the effect of that on his family, travelling down to Cardiff. That is an example of the unnecessary difficulties they face.
I hope that the Minister, with all his experience, will look at this. It entails NICE, orphan drugs and specialised services. It is very important. And, of course, I support our carers; as has been said, they are vital.
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Baroness Wilkins: I join the noble Baroness, Lady Masham, in strongly supporting the points made by the noble Earl, Lord Howe, especially in relation to specialised services and to disabled people who, as we have heard, have not been well served by the health services,. I declare an interest as someone with a specialist condition.
I also support the points made about carers by my noble friend Lady Pitkeathley. I know that when I have complications due to my spinal cord injury, it is my partner who then becomes my carer and is even more dependent on the quality of the health services than I am at that point. I hope my noble friend the Minister will be able to respond encouragingly to the points that have been made.
Lord Darzi of Denham: Amendment 13 proposes that the Secretary of State consult local authorities on any revision of the constitution where they are affected. Amendments 15 to 21 all propose that particular groups must be consulted during each 10-year review of the constitution. Amendment 31 proposes that the Secretary of State’s three-yearly report on the effect of the constitution considers the effect on carers in addition to patients, staff and members of the public. Amendment 14 would place a duty on the Secretary of State to publish a report on the results of future consultations on any revision of the NHS Constitution. I understand the intention behind these amendments but it is important to give some context for the current intention as it is set out in the Bill, and to explain that each of these groups is captured in the current drafting of Clause 3.
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Amendment 13, tabled by the noble Baronesses, Lady Barker and Lady Tonge, proposes that local authorities be specifically consulted on any revision of the constitution. I shall clarify the purpose of the interim revisions to the constitution to reassure the noble Baronesses that those who are affected by any revision will indeed be consulted.
The constitution is intended to be an enduring document, and any substantial changes should be made as part of the 10-year review. However, it is possible that changes in law or departmental policy will cause parts of the constitution to become out of date. We do not believe that it would be right to wait until the next 10-year review before making such relatively minor revisions, which is why we have made provision in the legislation for the Secretary of State to revise the constitution.
Clause 3(3) ensures that the Secretary of State will be under an obligation to consult those who would be affected by any revision. He must consult,
That would include local authorities, where they are affected. We have deliberately chosen not to specify which bodies must be consulted on revisions to the constitution, as there may be some revisions that are not relevant to them. We do not believe that it would be logical to impose a legal obligation on the Secretary of State to consult specific bodies if the proposed revision did not affect them in any way. However, I reassure the Committee again that where a revision affects certain bodies, it is fully our intent to consult them.
Lord Campbell-Savours: My noble friend says that it is not specific in the sense of identifying individual bodies. However, Clause 3(5)(d) states,
Seven of them are then laid out. So it is specific and identifies individual organisations, some of which may not be affected by any particular proposed amendment or revision.
Lord Darzi of Denham: I am grateful for that intervention. I am referring to revision of the constitution, which could happen much sooner than in 10 years, rather than the constitution itself. I am talking about minor revisions and changes in policy that may be necessary and about how we consult in relation to them. I will come back to the issue of the 10-year review of the constitution. I agree, though, that local authorities have been, and will remain, a vital group in shaping the constitution or any future changes.
Amendments 15 and 17, tabled by the noble Earl, Lord Howe, would add to the subsection that requires patients to be consulted on the 10-year review of the constitution the words,
and, to the subsection requiring staff to be consulted, the words,
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Similarly, Amendment 18, tabled by my noble friend Lord Campbell-Savours, proposes that trade unions and professional organisations representing staff are consulted. This makes a reference to the 10-year review. I reassure the Committee that bodies representing patients and staff, including trade unions and professional bodies, have been throughout the past 18 months, and will remain, a vital group in shaping the constitution and any future changes.
Many patient groups, including the Patients Forum, contributed to the production of the final NHS Constitution, as did many bodies representing staff, such as the NHS Confederation and Unison, as my noble friend pointed out. I am pleased that the chair of the Patients Forum, Sally Brearley, believes that,
“The NHS Constitution is a very valuable re-affirmation of the principles and values of the NHS ... It demonstrates the commitment of Government to the NHS, and of the NHS to its patients”.
Similarly, the Head of Health at UNISON, Karen Jennings, has declared that the constitution,
Our intention is to continue to work with as many bodies representing patients and staff as possible in the 10-yearly review of the constitution in any more minor revisions where they are affected and, more broadly, in ensuring that the constitution has a real impact. However, we believe that the legislation already captures these bodies in the 10-year review: Clause 3(5) sets out the duty to consult, among others, patients, staff and,
That could include the bodies representing patients and staff; indeed, I can put on the record our intention that such bodies will be consulted on any 10-year review of the constitution.
I turn to carers. Amendments 16 and 20, tabled by the noble Baronesses, Lady Barker and Lady Tonge, the noble Earl, Lord Howe, and the noble Baroness, Lady Cumberlege, propose that carers must be specifically consulted on the 10-year review of the constitution, a point made strongly by the noble Baroness, Lady Pitkeathley. Again, I reassure the Committee that we recognise the importance of the role of carers in the NHS and the importance of carers being an integral part of the constitution.
Indeed, noble Lords will be aware that one of the core principles of the constitution states that NHS services must reflect the needs and preferences of patients, their families and their carers. I am pleased that Carers UK, which we have already mentioned, was able to support the introduction of the constitution, saying that the new NHS Constitution gives carers,
- “prominence as partners in care. We welcome this as the beginning of a culture change in the NHS towards valuing the extraordinary caring contribution of ordinary people.”
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