Health: Patient Safety

Baroness Brinton Excerpts

Tuesday 24th June 2014 Lords Chamber

[Baroness Brinton (LD)]

My Lords, a 2012 report by the American Department of Health showed that 86% of reportable events were not reported, partly because of staff misperceptions about what constitutes patient harm. Will the Minister reassure the House that both the Government and the NHS regard one in five incidents going unreported as unacceptable? What will the Government do to ensure that all staff understand what needs to be reported and do so in a truly open and transparent culture?

[Earl Howe]

My noble friend makes a series of very important points. Clearly, a balance has to be struck here. It would become self-defeating if every single mistake, even one that had no bearing on patient safety, had to be reported by every single member of staff. The system would be overloaded. We are keen to ensure that those incidents that result in potential harm, real harm or—worse still—death are reported, exposed and dealt with. Of course the National Reporting and Learning System, which was originally part of the National Patient Safety Agency when the previous Government set it up and is now housed at Imperial College Healthcare NHS Trust, has the task of collating safety incidents from trusts and drawing lessons from them. That is every bit as important a process as it ever was. It will be the task of NHS England to draw those lessons together and incorporate them in its commissioning guidance. My noble friend has raised that issue and we have a task ahead of us that will take some time to achieve; but I believe that this is a welcome start.

Legislative Reform (Clinical Commissioning Groups) Order 2014

Baroness Brinton Excerpts

Tuesday 24th June 2014 Grand Committee

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)]

My Lords, this draft legislative reform order would amend the National Health Service Act 2006 in two ways. First, it would allow clinical commissioning groups—CCGs—to form a joint committee when exercising their commissioning functions jointly. The NHS Act already allows two or more CCGs to exercise their commissioning functions jointly, but does not make any provision for them to do so via a joint committee. Secondly, it would allow CCGs to exercise their commissioning functions jointly with NHS England, and to form a joint committee when doing so. The Act already allows NHS England and CCGs jointly to exercise an NHS England function, and to do so by way of a joint committee, but it makes no provision for them jointly to exercise a CCG function.

This draft order has already been scrutinised by the Delegated Powers and Regulatory Reform Committee and I was pleased with its recommendation that it should continue under the affirmative resolution procedure. I hope it will assist the Committee if I set out the need for these proposals.

I emphasise from the outset that the proposed arrangements are voluntary. One party cannot impose the arrangements upon another. This allows CCGs to retain their autonomy and to continue to make decisions that are in the best interests of their local populations. At the moment, the lack of provision for CCGs to form joint committees is placing a burden on CCGs and preventing them from working in the most effective and efficient way. Without the power to form joint committees, CCGs have had to find other means of reaching joint decisions which are binding. As an interim measure, some CCGs are forming “committees in common”, whereby a number of CCGs may each appoint a representative to a committee in common; those representatives then meet, and any decisions that are reached are taken back to their respective CCG for ratification. This leads to costs in people’s time to sit on multiple committees and administrative resource, as well as extra financial costs.

For example, I am aware of the limitations that the current commissioning arrangements are having on the East of England Ambulance Service. NHS Ipswich and East Suffolk CCG is lead commissioner for ambulance services across the east of England, and the remaining 20 CCGs in the region are associates to that commissioning arrangement. The CCGs established a commissioning consortium, which brings together all 21 CCGs to discuss both delivery against the ambulance contract and future strategy for ambulance services. However, due to the restrictions of current legislation, the consortium itself is not delegated any decision-making authority. While most CCGs party to the consortium have delegated a level decision-making authority to the individual officers who attend the consortium, the contract with the ambulance service is large, and decisions may exceed delegated limits. In those instances, decisions must be referred to CCG governing bodies, introducing a delay to the decision-making process.

Clearly arrangements such as these are burdensome, particularly when compared to the simplicity of a joint committee. Primary care trusts, the predecessors of CCGs, were able to form joint committees at which, subject to the terms of reference, all participating PCTs were bound by the decisions reached. We therefore want to allow CCGs a route in which, when they are collaborating with other CCGs, they can take decisions in a properly constituted forum. Furthermore, CCGs when agreeing to form a joint committee will have the freedom to agree terms of reference, including voting arrangements. This will not dilute the emphasis of local decision-making.

Similarly, the lack of any power for CCGs to exercise their functions jointly with NHS England is also causing inflexibility. NHS England and CCGs may wish to act jointly to commission better out-of-hospital services, for example. Making sure that services are integrated around the needs of the patient is the best way of ensuring that care is provided in a safe and compassionate way that most benefits the person. This amendment would allow CCGs and NHS England, as co-commissioners, to develop and agree strategic plans and delivery processes that take into account the effects of services across a whole pathway, facilitating design and continuity of services across primary, secondary and community care.

For example, CCGs and NHS England may wish to review service delivery across specialised services, commissioned by NHS England, and any impact redesign may have on non-specialised acute services, commissioned by CCGs, in order for services to be designed and delivered to achieve the best possible outcome for the population served. The inability of NHS England and CCGs to jointly exercise a CCG function and to form a joint committee when doing so makes it more difficult to make timely decisions, which can delay the ability to improve patient safety. Furthermore, the amendments would encourage the formation of new commissioning partnerships, allowing the most effective approach to be used.

The amendments would build upon them by giving CCGs greater flexibility and control in the way that they work. As CCGs become more established organisations, they need to have more flexibility to work together, and with NHS England. In any commissioning structure you have in place, there are always going to be some decisions that may need to be taken locally and some that span a wider population.

CCGs are still accountable as individual organisations. Joint arrangements mean that each CCG is still liable for the exercise of its commissioning functions, even where they are being exercised jointly with another CCG or NHS England. These proposed arrangements will not lead to reconfiguration by the back door. The purpose of these changes is to support more effective joint working and to allow discussions about service redesign to take place across the health economy. The proposed changes will not affect the existing processes and tests that any significant service redesign needs to follow. I beg to move.

[Baroness Brinton (LD)]

My Lords, the NHS Act 2006 started us down the route of commissioning; obviously, with the updating and creating of clinical commissioning groups under the Health and Social Care Act 2012, we are still moving into fairly new territory. Inevitably, CCGs are feeling their way in the new structures, including joint working. I am pleased that the order will now legislate more formally for CCGs to work closely with each other and with NHS England, and to jointly commission where appropriate.

One of the many reports that come back to your Lordships’ House from CCGs and NHS trusts is the desire to gold-plate any system with legal advice. For example, we know that the Health and Social Care Act enabled tenders to be taken for quality and efficacy, not just on cost, as under the 2006 Act, yet we hear time and again that lawyers tell commissioners that cost is the most important point. I also welcome the issues around CCGs and National Health Service England overlapping. The Minister referred to some of those; it is also important where there is a pathway in rare diseases, where there may also be some linkages with CCGs perhaps implementing at a lower level. That will smooth the way for that to work well.

To this non-lawyer at least it seems extraordinary that CCGs could not form joint committees to commission over boundaries. This draft order now makes it crystal clear that joint commissioning and the arrangements for ratification by the separate CCGs are not just acceptable but welcome. It is encouraging to see in the accompanying notes that the consultees to this order also see it as a cost-efficient measure; I add to that smoother working systems and, most importantly, joined-up services for users of the NHS.

[Lord Hunt of Kings Heath (Lab)]

My Lords, on the face of it the order is unexceptional, although I agree with the noble Baroness that CCGs have got themselves into a ludicrous state of getting legal advice on almost everything. It is patently obvious that there are ways in which they can come together to make decisions. We also see that as regards tendering, where, despite the commitments the noble Earl made, we see CCGs absolutely panic-stricken about making a decision not to tender out services. If ever one wanted evidence of the foolishness of the arrangements we now have, it would be the kind of reaction we are seeing from CCGs.

I will ask two or three questions on the order. I noted in paragraph 4.6 of the consultation paper that the department points out that there was opposition to the proposal to enable CCGs and NHS England to form joint committees. I understand that while it is mainly about CCGs forming joint committees, they can also form a joint committee with NHS England. The necessary protection is laid out in paragraph 3.6 of the paper we received, which says that:

“The Minister considers that the proposals maintain the necessary protections. CCGs enjoy a degree of autonomy”.

I thought that they were going to be autonomous, but there we go; it has been qualified in that document. The paragraph goes on:

“To this end, NHS England is under a duty … to promote the autonomy of persons exercising functions in relation to the health service. The wording of the proposed amendment to section 14Z9 is designed to ensure that a CCG function can only be jointly exercised with NHS England where both parties are in agreement, thus preserving a CCG’s autonomy”.

I put the point to the noble Earl that if you talk to CCGs, they do not feel autonomous, because they are used to being beaten up by NHS England—receiving incessant phone calls from the local offices of NHS England—and they and the accountable officer find themselves under huge pressure when there are problems with the system. Therefore the idea that there is an equal partnership between NHS England and the CCG as regards a joint committee is simply not believable. Clearly, local area teams will use that mechanism to force CCGs into joint committees and then force decisions through. I would have thought that that is patently obvious from what is happening in the field in the National Health Service. I would be grateful to hear the noble Earl’s comment on that.

Of course, I have no problem about CCGs working together so that we can get rid of some of the current fragmentation. If we take my own patch of Birmingham, where three and a half CCGs cover the city, there is no chance, it seems, of actually having a strategy for the city which can embrace all the trusts and commissioners unless it is done jointly. I would like to hear from the noble Earl how in fact this mechanism is going to be used to encourage CCGs, which are patently too small in many areas, to come together so that we get some decent strategic planning instead of the fragmented and inadequate contracting process that so many CCGs are undertaking at the moment.

I would also like to ask the noble Earl about consultation when decisions are made by a joint committee. I assume that the consultation rights and responsibilities would apply to a joint committee as much as they do to an individual CCG but, as there is scant evidence of CCGs undertaking proper consultations, I suppose that that is not much comfort. It would be good to hear a little more about how CCGs are going to work this. I must say that after two years of this wonderful new system, I am still waiting for a letter from my CCG saying that it actually feels some form of accountability to me as an individual, but alas that letter has yet to come. From the legal cases which have been brought against some CCGs, it is clear that they do not have any sense of accountability to their local population. That is not surprising because they are membership organisations. They are owned by GP practices, which are the members of the organisation.

This morning I listened to Simon Stevens, appearing before the Public Administration Select Committee, talk about the proposal to hand over some of the contractual responsibilities of NHS England to CCGs. So, in effect, not only are the CCGs membership organisations, they are now going to be given co-power with NHS England to contract with the individual members of the organisations in relation to primary care services. I can well understand why the local area teams do not have the capability to manage the primary care contract. It was patently obvious that they were not going to do so. But what it comes back to is that the governance of CCGs is hopelessly compromised. They ought to be public bodies with much greater lay representation. If they were, we would have much more confidence in the arrangements, but they are not. They are dominated by contractors who have a vested interest in the decisions made by those clinical commissioning groups.

Finally, I turn to page 3 of the impact assessment that provides the evidence base for the supporting paper. It is implied that decisions to deal with specific funding requests might be dealt with by a joint committee. That, of course, is a euphemism for rationing services. Again, we know that some CCGs are making highly dubious decisions about restricting patient services to which NHS patients are entitled. I would like some reassurance that if the joint committee is going to do this, it will be done in public, not behind closed doors, and after full consultation. Recently I have been particularly concerned about evidence which shows that NICE technology appraisals are not being fully implemented in the National Health Service. I remind the noble Earl that it is a legal requirement for a NICE technology appraisal to be fully implemented by the NHS. Again, I would like to hear what the Government are going to do to ensure that CCGs actually play fair by the public and do not unnecessarily restrict treatments.

The order itself is unexceptional and it is supported, but I have to say that the performance of some CCGs leaves a lot to be desired. It is because of the potential of the joint committees to make major decisions that I raise some concerns today.

Mental Health: Parity of Esteem

Baroness Brinton Excerpts

Monday 23rd June 2014 Lords Chamber

[Earl Howe]

My Lords, yes, we are doing so. We are paying attention not just to women in prison but to women and men in prison and in the criminal justice system more generally. We have committed £25 million to introduce a new liaison and diversion scheme in England to identify and assess the health issues and vulnerabilities of all offenders when they first enter the criminal justice system, which I think is the crucial moment. We are building on liaison and diversion services to improve the quality of those services and their coverage across England, and we are trialling a core model in more than 20 areas over the next two years with the aim of moving towards comprehensive rollout by 2017.

[Baroness Brinton (LD)]

My Lords, is the Minister aware that one in 10 children between the ages of five and 16 has a mental health problem and may continue to have problems into adulthood? What are the Government doing to ensure that child and adolescent mental health services are properly funded by NHS England and CCGs?

[Earl Howe]

My Lords, we are investing £54 million over the four-year period from 2011 to 2015 in the Children and Young People’s Improving Access to Psychological Therapies, CYP IAPT, programme. That, along with the measures that I referred to earlier, will, I hope, give a sense of the priority that we attach to children and young people’s mental health services.

National Health Service

Baroness Brinton Excerpts

Tuesday 17th June 2014 Grand Committee

[Baroness Brinton (LD)]

My Lords, I thank the noble Lord, Lord Crisp, for initiating this interesting debate on citizen and patient power. In the brief time available I want to focus on an issue that I believe is more likely to produce real reform in the NHS than many structural changes.

Before doing so, I must declare my interest as a patient with a chronic illness—rheumatoid arthritis—and it is RA Awareness Week, to get the plug in. I have some knowledge of my disease and its consequences and read up on treatments and their side effects. Later on I will talk a bit about the expert patient programme and it will be obvious that I am a convert to it.

First, however, let us go back 50 years. In those days, doctors liked the bedside manner approach, key to which was putting patients at their ease. It certainly was not intended to give patients more power in the NHS. The picture that comes to mind is of James Robertson Justice as the paternalist consultant, patting a patient on the knee and saying, “Don’t worry your pretty little head about it, my dear, that’s my job”—rather like the consultant mentioned by the noble Baroness, Lady Pitkeathley. The good news is that things have improved greatly, but sadly it is also patchy.

Empowering patients about their health issues and treatment seems to have been introduced first in chronic conditions, where a range of healthcare professionals are involved, and frankly, where it is in the best interests of the NHS to make patients more involved in their treatment, whether informally or in a more formal system such as the NHS expert patient programme. In April this year the Health Foundation published a thought paper by Dr Alf Collins, a clinical expert in pain management. This brief 12-page paper is well worth the read: it is a revelation. Right at the start the Health Foundation sets out its goals for,

“a more person-centred health care system. One that supports people to make informed decisions about and successfully manage their own health and care, including choosing when to let others act on our behalf”.

It goes on to say:

“This requires a change in behaviour and mindset from patients and clinicians, supported by a system that puts patients at its heart”.

Let me give you two brief examples of people that I know, to illustrate the difference between the more usual and traditional patient-reported outcome measure, versus the person-centred patient-reported experience measure.

Jane—not her real name—has a chronic disease with pain and fatigue. She is finding her new medication hard to manage, it is making her sick, and she is worried about managing her children and her part-time job. She goes to see her GP and bursts into tears, saying that the pain is excruciating, she thinks the medication is not working and she is at her wits’ end. The GP says, in a kindly way, that she wants to refer her to the mental health team for some psychiatric support. Jane goes home, absolutely convinced that the GP thinks she is mad and does not believe that she is ill at all. Jane's story is real; in fact, yesterday I read it on a bulletin board. The GP was focusing on the outcome. What could she do for this patient to help her instantly? There was a magic solution: a referral elsewhere.

Contrast that with another patient. It is the same illness with the same treatment, but all the healthcare professionals involved with her care ask her questions. The GP in this case asks about the side-effects and what she wants to achieve: does she need time off work, or medication to reduce the nausea so that she can continue to work? She is reminded that depression is a common issue for people with this disease, especially for people with her side-effects at the moment. Does she want further help? The patient consultation lasts exactly the same time, but the latter patient walks away with reassurance, knowing that if she needs more help it is available, and with a prescription for the nausea so that she can try to stay working, which should also help to reduce the depression. This, too, is a recent story—it is mine.

The latter is a patient-reported experience measure and is great for the patient. It is worrying for commissioners, though, because most commissioning is based on clear, achievable outcomes—referrals, medication, operations—rather than the softer and qualitative experience measures. A typical NHS expert patient programme provides patients help with dealing with pain and fatigue; relaxation techniques; healthy eating and exercise; how to communicate with their family, friends and healthcare professionals; and how they can best plan for their future.

Research into expert patients shows that they need fewer interventions, are less anxious, more confident, can communicate better with healthcare professionals, take less time off work and are less likely to suffer acute episodes requiring expensive admission to hospital.

I agree with the noble Lord, Lord Crisp, that England may well be ahead of the curve. A French consultant gave a Gallic version of James Robertson Justice to my mother-in-law just last year, even though she is a retired nursing sister with 40 years’ experience of the NHS and speaks fluent French. What I like about Dr Collins’s paper for the Health Foundation is that it sets out clearly for healthcare professionals how they can move to this different mindset. What is particularly encouraging is that it really helps patients and saves money. What is not to like? Let us hope that this is the sort of thing that moves us to real patient empowerment in the future.

Health: Rheumatoid Arthritis

Baroness Brinton Excerpts

Monday 16th June 2014 Lords Chamber

Asked by

[Baroness Brinton]

To ask Her Majesty’s Government what steps they are taking to ensure that general practitioners are trained to recognise potential rheumatoid arthritis symptoms, and refer such patients immediately to rheumatologists.

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)]

My Lords, the Government’s mandate to Health Education England includes a commitment that it will ensure that general practitioner training produces GPs with the required competencies to practice in the NHS. The content and standard of medical training is the responsibility of the General Medical Council. The current GP curriculum requires trainees to successfully complete training on care of people with musculoskeletal problems, which includes rheumatoid arthritis.

[Baroness Brinton (LD)]

My Lords, I thank my noble friend for his helpful Answer. However, the reality is that too many GPs do not recognise the symptoms. A new report published today by the National Rheumatoid Arthritis Society shows that a shocking 25% of patients have to stop work within the first year of diagnosis, and with the delays their clinical outcomes are poorer and it costs the NHS much more. What will the Government do to raise awareness of symptoms, particularly among GPs?

[Earl Howe]

My Lords, I pay tribute to the National Rheumatoid Arthritis Society, which is organising Rheumatoid Arthritis Awareness Week this week, between 16 and 22 June. I am aware that Public Health England has run early diagnosis campaigns, which up to now have focused largely on cancer. However, I understand that a broader focus on earlier diagnosis is currently being considered. What might be done to tackle other conditions or symptoms has yet to be decided, but I will keep the noble Baroness informed of developments.

National Health Service: Hospital Beds

Baroness Brinton Excerpts

Wednesday 11th June 2014 Lords Chamber

[Earl Howe]

My Lords, no. By comparing the OECD bed-provision data and the 2011 joint prevalence survey, the available European data indicate that bed provision and healthcare-associated infection rates across countries are not correlated. Indeed, as I have said, we have seen a dramatic fall in the number of healthcare-associated infections in hospitals, combined with a rising level of demand for in-patient beds.

[Baroness Brinton (LD)]

My Lords, the noble Lord, Lord Kennedy, mentioned France. In France, most patients who have had a hip replacement spend a month in a convalescent hospital having in-house physiotherapy, whereas of course in the UK most people return home. I wonder whether my noble friend can tell us whether there are data to show how medical technology has improved both hospital care and community care, so that we can confirm the OECD report’s phrasing that the reduction in the number of hospital beds,

“has been driven … by progress in medical technology”.

[Earl Howe]

Quite a bit of the technology has enabled day case rates to rise dramatically. Day cases now account for 80% of all in-patient episodes. For example, comparative data suggest that our rates for day case cataract surgery are among the highest at nearly 98%.

NHS: Clinical Commissioning Groups

Baroness Brinton Excerpts

Monday 9th June 2014 Lords Chamber

[Baroness Brinton (LD)]

My Lords, given that the Francis report said that it was important that carers be involved and informed about the care of their family member but one study found that only one-third of those surveyed were told how to care for their relative or how to cope with dementia, what are the Government doing to make that a real priority for CCGs?

[Earl Howe]

My noble friend makes a crucial point. In the document Transforming Primary Care, we included a clear expectation for GPs to work with wider health and care professionals to involve people using services and their carers in identifying and planning for a person’s needs in the round. The plan sets out a clear expectation for GPs to identify as a matter of course whether a person is themselves a carer for another person, whether they have a carer or carers and to understand fully the contribution that carers make.

NHS England: Health and Social Care Act 2012

Baroness Brinton Excerpts

Wednesday 7th May 2014 Lords Chamber

[Earl Howe]

My Lords, it is important for me to point out that the Secretary of State is acting entirely and properly within his powers. He is under a legal obligation to keep the performance of NHS England under review. That is in the Act. He would not be doing his job if he was not keeping in touch with NHS colleagues and talking and listening regularly to feedback about how things are going. He is accountable to patients and to Parliament and I do not think the public would expect anything less.

[Baroness Brinton (LD)]

My Lords, given that many Ministers have spoken very clearly about the priority for parity of esteem for mental health and the answers that my noble friend the Minister has given to the noble Lord, Lord Hunt, and others, what more can the Government do if NHS England continues to refuse to allocate funding fairly for mental health?

[Earl Howe]

My Lords, as I have indicated already, we view funding as just one part of the story in achieving parity of esteem. However, we will hold NHS England rigorously to account for this and we have regular meetings to talk about that. We have set NHS England that strategic objective and we have singled out in particular action on crisis intervention, extending access to IAPT therapies and developing options around access and waiting time standards. Therefore there are a number of detailed issues that we expect NHS England to address.

Care Bill [HL]

Baroness Brinton Excerpts

Wednesday 7th May 2014 Lords Chamber

[Baroness Wheeler (Lab)]

My Lords, I thank the Minister for his full and thorough explanation of the Government’s changes to the Bill since it left this House. We will deal with each issue as it comes up. I will deal with Amendments 1 to 10, 44 and 46 to 51 on the Better Care Fund, and Amendments 12 to 39 on the care and support appeals process.

In light of today’s revelations about the Government’s problems with the aims and operations of the Better Care Fund, perhaps I might ask a couple more questions that follow on from the earlier exchange with the Minister on this matter. The Government’s technical amendments—Amendments 1 to 10, 44 and 46 to 51 —on the fund and achieving integration of care and support between the NHS and local authorities are straightforward. Of course, whether the fund can ever achieve what it set out to achieve looks like a very different matter.

The Cabinet Office review has found that the £3.8 billion fund lacks financial credibility. The Nuffield Trust says that it is based on “flawed logic”. The King’s Fund says that the aim stressed by the Minister earlier to get spending plans in place for the fund in time for the 2015-16 Budget is “completely unrealistic”. Its chief executive, Chris Ham, points out in today’s Guardian what many of us have been stressing all along, despite supporting the principle of and need for the fund; namely, that hospital budgets can be reduced only if much more care is already being provided in the community by GPs, community nurses and staff who are supporting patients in their homes. He says that just cutting NHS hospital budgets now would place,

“additional stress on an NHS already struggling to balance the books and maintain acceptable standards of patient care”.

Surely that is the point. Taken with the huge underfunding of local authority social care highlighted by the Age UK report Care in Crisis that was referred to earlier, this is the underlying problem that has still to be addressed. The fund does nothing to address the huge social care funding gap that has led to the cuts in social care support that Age UK’s report has highlighted, particularly the ending of help with essential tasks for older people, such as eating, washing and getting dressed. Those are the very services that help them remain independent and living in their own homes with a good quality of life.

The Minister says the fund has not been suspended, but there are clearly problems. Can the Minister give us any further details about the Cabinet Office review findings, and in particular the concern about the lack of detail about how the savings will be achieved? What is the timescale for the further review referred to by several newspapers and the specialist press today? Can the Minister explain how progress is to be made in enabling older people to remain active and independent at home or in the community when there is just not the funding or support available to help them?

Finally, on the technical amendments to the care and support appeals process, we welcome the Government’s announcement accepting the two recommendations from the Delegated Powers Committee and fully support these government amendments.

[Baroness Brinton (LD)]

My Lords, I have just one issue to raise, on Amendment 32 and the Government’s amendments in light of the Delegated Powers Committee report. I speak on behalf of a number of people who are grateful that the Government have been able to respond very quickly to this. It is much more sensible for this to be an affirmative instrument rather than a negative one.

[Baroness Barker (LD)]

My Lords, in view of the press coverage today, perhaps I could ask the Minister to confirm a point. When the Better Care Fund was announced, the intention was that projects would start in April 2015. Is that still the Government’s intention or has the timescale been put back? What seems to me constructive is the move to have more engagement from the NHS in setting up the projects under the Better Care Fund. One key aspect of the Better Care Fund on which it rests is ensuring that there are enough strong and appropriate providers of community services to ensure that older people get the care in the community that they need.

The noble Baroness, Lady Wall, put a question during our earlier exchanges that went straight to this matter. You cannot simply close spaces in the NHS and expect that somehow people will be provided—magically, at a stroke—with services in the community. I quite see why people have leapt on this as a story, but I struggle to see the substantive issue. I go back to a point that was made earlier: how many times have we stood in your Lordships’ House and talked about integration of health and social care as being a desirable end that will deliver better services? It seems to me that the NHS may be questioning some matters to do with budgets. That is not a case for undermining the Government’s whole policy.

--- Later in debate ---

[Lord Horam (Con)]

My Lords, we owe a debt of gratitude to the noble Baroness, Lady Finlay, for tabling an amendment to this Motion. I was present at the meeting yesterday, along with the noble Lord, Lord Hunt of Kings Heath, when we had a fruitful discussion on these issues. When I was the Member of Parliament for Orpington these matters were the bane of my life. The South London Hospitals Trust was a huge problem, as many noble Lords will be aware, with debts of around £150 million at one stage. Although at another period of my life I was a Minister for Health, I was specifically excluded from dealing with the problems of London hospitals because I was a London MP. It is ironic to get to a position of power where you might actually be able to do something for your constituency but then to be disempowered from dealing with it at all. None the less, that is the proper way to proceed.

It is worth bearing in mind that we have now got to a sensible position whereby there is parity in consultation, understanding and agreement between a commissioning group affected by the hospital trust’s special administrator and one which may be outside the trust and, therefore, nominally unaffected by it. Parity of esteem is the effect of the amendment tabled by the noble Baroness, Lady Finlay. I am grateful to the Minister for responding so positively on these matters: we have now reached a very sensible position. However, we should not believe that that is enough. It is a necessary condition for resolving some of these problems but it is not sufficient. Ironically, in the case of Lewisham and the South London Hospitals Trust, there was a very good consultation, called A Picture of Health, which lasted for two years and encompassed all the hospital trusts in south-east London. It was very extensive—and expensive, if I may say so—but it came to the wrong conclusion. The conclusion was that Lewisham should continue as a hospital trust on its own and that the other three principal hospitals—Queen Elizabeth, Woolwich, Princess Royal University Hospital, Bromley and St Mary’s, Sidcup—should all be put into one huge trust. That never worked and that particular trust has had to have special measures to deal with its financial problems.

That excellent consultation ultimately reached the wrong conclusions. Ironically, the rather more short-circuited consultations conducted by the special administrator led to rather better conclusions. We now have a solution on the Bromley side of things, as it is now a part of King’s College Hospital NHS Trust. It has effectively been taken over by it, which is a very sensible arrangement. St Mary’s, Sidcup is now doing other things—quite rightly because it is an old hospital and did not really have the facilities to run an accident and emergency department in the way that a modern hospital needs to do. Woolwich has been put in with Lewisham. We therefore have the makings of a better solution despite inadequate consultation. It shows that we do not merely need good consultation with everyone understanding what is happening; we need somebody to reach the right conclusions at the end of the day. I am referring here to the remarks made by the noble Lord, Lord Turnbull. He is absolutely right that there needs to be a way that the public interest—as well as the understandable more local interests—can be reflected, otherwise we will never make real progress.

The noble Lord, Lord Hunt, made the important point that there are really big problems. We all have scars resulting from the closure of hospitals that sometimes have to be closed. He will be aware of the report last year by the NHS Confederation, the royal colleges and the organisation representing the patients’ voice, which said that up to 20 general district hospitals in this country need to be closed if we are to have a sustainable hospital service and a sustainable NHS. If we do not close those hospitals over a period, after consultation and so on, we will be taking money away from other parts of the NHS, such as mental health and GP services, which are badly needed. We cannot afford to keep hospitals going when they are in need of change.

The way in which change needs to happen is becoming apparent—there is a general consensus. First, there should be more specialist hospitals. I note that the King’s Fund says that A&E departments, maternity care, neonatal services, heart services and stroke care are all areas where specialist hospitals can give better care than general district hospitals do at the moment. That is already happening in London, certainly in the case of stroke care. The number of hospitals has been reduced and stroke care has immeasurably improved, I think to the tune of 50% over the previous two or three years. Equally, of course, the other aspect of this improvement is bringing care back to the community and taking it away from hospitals. People do not want to go to hospital; they think they will get an infection or a disease, apart from anything else. People die as a consequence of being in hospital. We therefore need to bring care back to the community. However, all of that takes time.

I therefore agree with the noble Lord, Lord Turnbull, that we cannot allow ourselves to get into a situation where everybody defends every brick of every local hospital. We all know what happens. As soon as there is a threat to a local hospital the local MPs and the local newspapers get on their high horse, the campaigners come out and there are parades down the street, and no one can move an inch. I hope that noble Lords can see this legislation in the round. It provides for the proper, equal consultation of all interested parties, but we should not put road blocks in the way of necessary change in the NHS. If we do, we will have done the NHS a very bad service.

[Baroness Brinton]

My Lords, I add the thanks of the Liberal Democrats to those that have already been offered for the help from the Minister and his officials since this matter was last discussed in your Lordships’ House. There have been a number of meetings and an enormous amount of correspondence during that time. A key part of that has been the definition of “consultation”, and how to ensure that services in another trust area rather than only an adjacent area are considered. I am particularly grateful because the amendment tabled by my honourable friend Paul Burstow in the House of Commons is broadly the same as today’s government amendment. I thank him too for his tireless work in expanding this. I very much appreciate the comments made by the noble Lord, Lord Hunt, in his amendment, which try to strengthen that.

However, I am not convinced that there is a need for further strengthening. The committee is there, and I hope that the Minister will be able to confirm that, following the request made by the noble Baroness, Lady Finlay. The committee is there to help set things up and ensure that the progress made as the special administrators start their work takes place in an appropriate fashion, and that every aspect of the consultation—which clearly has worried your Lordships—is addressed.

I want particularly to come back to the point about not considering only adjacent services. Much of the discussion this afternoon has been very focused on London, for fairly obvious reasons. However, there are issues around reconfigurations in rural areas, which do not mimic the pattern of a large number of hospitals in a fairly narrow space. Services may be much more scattered. That is why the word “adjacent”, to which others have referred, is not particularly appropriate. Quite often people will find themselves going not only to one area but beyond that area for a very particular service. It is important that the amendment laid down by the Government today makes it absolutely clear about the extension of consultation with those affected trusts.

[Baroness Murphy]

My Lords, the disease with the greatest economic impact on the NHS is the disease of inertia. As the Secretary of State, Jeremy Hunt, pointed out in the other place during the debates on this issue, we are now four years on from the very public exposure of the problems of Mid Staffs and we have not yet made a decision. The trust administration procedures are indeed invoked only as a very last resort, but they are a very necessary one. I am very worried because, although the noble Lord, Lord Hunt, thinks that this government amendment does not go far enough, I am afraid that I think that the government amendment as it is goes quite a long way. I was much happier with it before we all started meddling with it.

The real issue is that we must start to make decisions, and we are not making decisions. We are allowing services to carry on producing bad care. We are allowing them to get into debt, which means transferring money from good services. It is almost never possible to reconfigure a bad service out of one hospital, or indeed to shut one hospital or service, without a substantial reconfiguration of services in another hospital. Unfortunately, it will always impose on the wishes of commissioning groups in another adjacent location or a little further down the line in a rural area.

I will, with reluctance, accept the Government’s amendments, although they add a little more consultation to the process. Please, however, let us go no further than that, and please let us not support the amendment of the noble Lord, Lord Hunt, which in my view would take us even further away from where we want to be.

--- Later in debate ---

[Lord Lester of Herne Hill]

My Lords, the question that we are debating at the moment as we approach the enactment of the Bill is whether any extra words in any of these amendments are needed to provide more safeguards and greater public trust and confidence. The bit of law which is paramount but which has not been mentioned so far is the Human Rights Act. This Act, in Section 3, requires that all legislation, including this Bill, must be read and given effect to, if it is possible to do so, compatibly with the convention rights. One convention right, in Article 8, is the right to personal privacy. The Human Rights Act also provides that if any public authority, which includes the Secretary of State and any body performing functions of a public nature, were to breach the right to privacy, it would be liable to obligations, damages and other remedies under the Act. We do not have a written constitution which guarantees privacy; instead, we have the data protection legislation, which is broad-ranging, and the Human Rights Act.

The right to privacy requires three things. One is reasonable legal certainty where there is to be any invasion of privacy—one must know what it is for. The second is a legitimate aim—it must be done for a proper purpose. The third thing is that any invasion must satisfy the principle of proportionality—it must not be excessive. There is a lot of case law on this. Indeed, I was involved in one of the cases years ago in the Court of Appeal—called, I think, Source Informatics —which dealt with the lawfulness of supplying anonymised patient data.

I do not think it is sensible to add further language or further mechanisms over and above those that the Minister has described this afternoon. The more specific we become and the more we go on adding, the more ambiguities we create over what the additional words mean and how they might be interpreted. My view is that it is much better to use the Human Rights Act, the data protection legislation and the specific safeguards that the Minister has adumbrated very clearly today. In my view, they completely satisfy the right to patients’ personal privacy and I cannot think that adding these other words will add to public confidence. It seems to me that public confidence depends more on leadership and public information based upon the framework that we have.

Therefore, I hope that we do not divide the House on this. I hope that we are all able to agree that confidentiality and privacy are vital, as is public confidence, but that we should not overlegislate and overprescribe. In particular, we should not do so when we are considering Commons amendments at the 11th and a half hour before midnight, and we may later come to regret anything that we now add which creates further problems and further ambiguities.

[Baroness Brinton]

I agree with the last comments of the noble Lords, Lord Lester and Lord Ribeiro. One of the problems that your Lordships’ House has faced with this is the issue of data used for research versus data used for commercial purposes. That becomes a very grey area when some commercial firms are doing pure research. It may be worth your Lordships’ House remembering that even commercial research, whether it is carried out by research departments or within universities and other research bodies, is bound by the strongest ethical codes in which we should all have trust and assurance because they are respected around the world. I would be grateful if the Minister could confirm again—I know he has already done so—that commercial data will not be released so that, for example, an insurance company could raise premiums for a particular group of patients. That is the fear that the public have, rather than the issue of using research data, for which we already have many structures and for which the Health Research Authority is properly the correct authority to make sure that the codes are followed absolutely. There is a difficulty in that pseudonymised and anonymised data can sometimes be undone, but that issue already exists in other research areas and there are plenty of mechanisms to hold researchers to account should they use any of that information themselves. I support the point of the noble Lord, Lord Lester, that we should be content with the Government and that if we start to overprescribe, we will end up unravelling some of the complex but effective arrangements that already exist in the research world.

Secondly and very briefly, I have previously raised with the Minister one very specific point on this issue, and I have asked him this question in writing in advance. Has there been any progress on the timetable for inclusion of primary care musculoskeletal data into the care.data programme? I understand that it was an unintentional omission earlier in the process but, given the number of people in this country suffering from musculoskeletal problems, it would be quite extraordinary if they were not included at an early stage.

[The Earl of Erroll (CB)]

My Lords, I would just like to say a few words about this because I am very involved in the whole world of IT, personal data and identification and the issues around examining the data. One of the things that has become apparent to me is that if care.data is to be effective, public trust must be maintained in it—that is the core problem. It needs to be there so that we can do epidemiological studies, and to do those some information will have to be in the database—such as postcodes, so that you can look for clusters and so on—which will potentially allow people to be identified. Once you compare it and link it across to other databases, if you are looking for someone who is of a certain age, a certain health profile and in a certain area down to 100 yards, it is fairly easy to start working out who they are by cross-linking. However, it may be important to take that risk from time to time, as long as it is done properly. What we do not want if this is to work is for people to feel a need to opt out. You cannot do epidemiological studies if half the population decide they are going to opt out. It is essential that the public trust the database, trust that they will be protected as far as possible and trust that the information will not be misused against them. That is the core to getting this whole thing to work, and if you fail on that you have had it.

The noble Lord, Lord Lester, made a very good point about the human rights stuff being in there and that we have the Data Protection Act and all these things. The Minister also mentioned the Data Protection Act. However, there are some challenges with this. One of them is how you bring a case under the Human Rights Act when a department or the health service is acting incorrectly. It is quite tricky; it does not happen overnight and you would be lucky to stop it. There are wonderful protections in the Data Protection Act but there is a certain amount of vagueness about exactly where the limits are and, worse still, it will all be changed this autumn or winter when the new European Parliament assembles. The proposals nearly got through before the coming elections. Under the digital single market agenda, a new Data Protection Act regulation will almost certainly come out of Europe somewhere towards the end of the year. That will have direct action in this country. We have no control over it as it is a European law that is directly effective in this country, and the Information Commissioner over here will be the person who will enforce it. We will have no say in whether it relaxes things too far or becomes too prescriptive in what it does. We cannot rely on it for certainty in the future

National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) (No. 2) Regulations 2014

Baroness Brinton Excerpts

Tuesday 6th May 2014 Lords Chamber

The way in which medicines for rare diseases are commissioned and provided in this country is important. Although it is fairly early days, there are some discouraging signs, and I am grateful for the opportunity to raise my concerns with the Minister this afternoon. I should have declared my interests as the chair of a foundation trust, a consultant and trainer with Cumberlege Connections, and president of GS1. I beg to move.

[Baroness Brinton (LD)]

My Lords, the regulations, which address an important Cinderella service in the NHS that not many know about, are extremely important. I thank the Specialised Healthcare Alliance for its briefings, which have provided an extremely helpful background. I know that the noble Lord, Lord Hunt, has provided a couple of figures, but it might be worth pointing out that there is a clear distinction between “rare” and “very rare” diseases. It sounds silly to say, but those with very rare diseases would welcome having, for the one in 17 or fewer of the population who will be affected by a “rare” disease—that is the ratio—a reasonable coverage throughout the country, although it may be in specialised areas. However, “very rare” diseases may affect fewer than 500 patients in the UK and, in the case of one or two diseases, may affect perhaps only one or two patients.

With the implementation of the new clinical commissioning groups it has obviously been important to reassess how treatments for rare diseases are commissioned. I do not have to declare an interest because I do not have a rare disease but, as someone who has to access rare biological medicines, I know that my local CCG and many others are struggling with the whole issue of prescribing expensive drugs. However, they cost pocket money when compared with the cost of medicines and treatments that we are looking for as regards rare and very rare diseases. The key is that one-size commissioning will absolutely not fit all, even within the definition of one rare disease, because it would be very unusual to find one clear clinical route. These days, the personalisation of drugs based on genes identification—80% of rare diseases have a genetic component—and the range of co-morbidities with most of these diseases mean that we absolutely must have clear and individualised treatment routes, with a much higher level of understanding of the diseases.

That is why I welcome the prescribed specialised services advisory group, which, for brevity, I shall refer to from now on as the PSSAG—I do not know what the Department of Health is calling it but we may as well add something else into the alphabet soup. It is important that the Secretary of State consults the PSSAG. The regret Motion was laid prior to the publication last week of the recommendation from that special advisory group. Inevitably, the timing is unfortunate, but life is like that. However, I believe that the publication of this report significantly reduces the concerns in the regret Motion about fragmentation and transparency. For example, the sections on membership and process on pages 7 and 8 of the report, some of which the noble Lord, Lord Hunt, referred to, make it very clear that both lay members and representatives from the royal colleges, as well as members with financial and technical expertise who can offer assistance, will come together to look at things. The noble Lord referred to what has to be reviewed but the other elements are equally important. The PSSAG must also consider how activity can be identified to enable separate contracting, monitoring and payment, which I think addresses the noble Lord’s point about what happens when things are devolved to a regional level. It also has to address the running costs associated with separate and direct commissioning, as well as consider defining elements of service to be commissioned. Therefore, I think that I am more reassured than the noble Lord, Lord Hunt.

It will be very important to monitor implementation, partly because, certainly in the early days, it will be difficult to budget for it, in part because of what I said about the personalisation of treatment routes and medication but also because, as we and the commissioners become much more familiar with the changes taking place in the treatments, particularly the gene therapy treatments, we may find that the costs of associated treatments are significantly reduced quite early on if the biologics and other superdrugs, as well as stem cell drugs, begin to work. Therefore, I would be grateful if the Minister could reassure the House about monitoring the situation once the PSSAG gets fully into its stride and commissioning starts to take place.

I have one area of concern, which is perhaps where more than one of the specialist groups that are going to be looking at treatment routes are involved in commissioning a patient’s treatment. Often two, three or possibly even four specialist groups are likely to be involved. In cystic fibrosis there would obviously be a principal neurological one but blood and kidney specialist groups might be involved as well. My fear is that we may end up, as we have done in the NHS in the past, with the position where a patient in a hospital sees lots of different consultants but does not know who has overall responsibility for holding the ring. Is there an equivalent in this sector to make sure that one group has a specific responsibility, partly so that clinicians and therefore their patients are not passed from pillar to post among these different specialist advisory groups?

[Lord Walton of Detchant (CB)]

My Lords, I am grateful to the noble Lord, Lord Hunt, for raising this crucial matter. This issue of rare diseases is of increasing importance with the developments in knowledge and in new forms of treatment that are beginning to emerge. For many years in the NHS, doctors and scientists recognised that there were a good many rare diseases, but those received comparatively little attention save for supportive treatment because no effective drugs were available that were curative or that would at least alleviate significantly the effects of such diseases.

Of course, one has to recognise that many rare diseases still exist in medicine but every single disease, even if it is incurable, can have its effects modified to some extent by pharmacological, psychological and physical means. However, that was not particularly brought to public attention until the past few years, when developments in molecular biology—not least in genetics—highlighted by the rare diseases consortium and by the Genetic Alliance UK meant that in a very large number of rare diseases the causal gene was identified, isolated and localised in the genome. In addition, drugs have begun to emerge which will alleviate or overcome the effects of the genetic defect. For those patients who have a rare disease, affecting up to several thousand individuals, these are known as orphan drugs; for those affecting a few hundred or a few dozen patients, these are known as ultra-orphan drugs, which are very expensive. The number of patients likely to benefit is relatively small so the commercial viability of these remedies is at least a matter of grave concern.

While there are important things to take on board here—we were talking about R&D and AstraZeneca a little while ago—we must recognise the fact that Britain has an outstanding record in medical research and development. As I have often said, today’s discovery in basic medical science and in applied science brings tomorrow’s practical development in patient care. People with rare diseases can be helped by these remedies that are now coming on stream much more rapidly than has been the case in the past. The important thing is this: as the noble Lord, Lord Hunt, said, before the Health and Social Care Act was passed, we had the Advisory Group for National Specialised Services which commissioned services for some people with rare diseases. When the Act was passed, we—those who debated it extensively in this House—were reassured by the knowledge that there was an agreement that highly specialised services would be commissioned by NHS England. In recent debates with the noble Earl, he has been able to reassure us that that organisation has a rare disease advisory group, advising it on the management of these conditions. He was also able to reassure us about the early availability in this field, and in others, of unlicensed drugs in specific circumstances that may be effective in the management of many conditions in medicine—not just for cancer but for rare diseases, too. That is crucial.

However, as the noble Lord, Lord Hunt, said, we are concerned that the services are somewhat fractured in the sense that I have been unable to find out with any great clarity the terms of reference of the prescribed specialised services advisory group. It is not at all transparent at the moment. As the noble Lord said, nothing has been clearly published about its membership, its modus operandi and how it will function, or to what extent it has a relationship, if any, with NICE on the new procedures that NICE is introducing for the examination of orphan and ultra-orphan drugs. We need reassurance and more information on how this group works and, in the interests of public scrutiny, how it makes an effective contribution to health service decision-making. These are matters of great importance because rare diseases, though rare, are a major blight on people in the community. However, we cannot assess human suffering in purely numerical terms. The suffering resulting from many of these rare diseases is in many ways serious and exceptional and deserves very special attention.

For that reason I was very concerned, and I hope that I have misinterpreted the remarks of the director of NHS England, Mr Simon Stevens, in his report to the Commons Health Select Committee. He said that he thought there was a need for the scope of specialised services to be reviewed because he thought that they had been overextended. This is a phase in medicine in the UK when that would cause great concern to patients and their families and to many doctors who are concerned about the treatment of these diseases.