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.

Health: Folic Acid Fortification

Baroness Brinton Excerpts

Wednesday 2nd April 2014 Lords Chamber

[Earl Howe]

Because I have been told I cannot.

[Baroness Brinton (LD)]

My Lords, pending that decision, and even with the fortification of flour, the fact is that not all women planning to get pregnant will have the right level of folic acid. Are the Government planning a media campaign to encourage mothers about this? I mean not just the information on NHS pages but radio and magazine advertisements for young women so that they start to think about it when they begin to consider having their families.

Health: Local Healthwatch Funding

Baroness Brinton Excerpts

Wednesday 19th March 2014 Lords Chamber

[Earl Howe]

My Lords, I would say that it is not the role of the Government to dictate what local authorities should be doing. It is up to local authorities to make judgments about what are the needs and priorities of their areas. I would also say that there cannot really be any direct comparison between the money made available by central government and the funding provided to local Healthwatch. It is not the case that £10 million has somehow disappeared. It is, rather, that councils have made local funding decisions which mean that £33.5 million was invested in local Healthwatch last year. What matters here is the transparency. That is what we very much welcome. It enables local Healthwatch to hold local authorities to account for their funding decisions and thereby, perhaps, influence them to give them a bit more money if that is required.

[Baroness Brinton (LD)]

My Lords, in the light of the Minister’s response, what assessment have the Government made of the extent to which local authorities are meeting those needs?

[Earl Howe]

My Lords, we will not have a comprehensive picture of the impact that local Healthwatch has made until it publishes its annual reports later in the year. At the moment, we have anecdotal reports of some considerable successes around the country, but until we have those annual reports, it would be premature for me to make a general comment.

Mental Health: Funding

Baroness Brinton Excerpts

Tuesday 18th March 2014 Lords Chamber

Asked by

[Baroness Brinton]

To ask Her Majesty’s Government what steps they are taking to protect the provision of mental health beds and funding, in the light of their commitment to parity of esteem between physical and mental health.

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

My Lords, we are clear that acute beds must always be available for people who need them. Providers have a responsibility to listen to patients and to offer care in the community as well as in hospitals, when appropriate. The mandate to NHS England sets its specific objectives, including on mental health. It is for NHS England and clinical commissioning groups locally to determine how best to allocate funding in commissioning services to meet local need.

--- Later in debate ---

[Baroness Brinton (LD)]

I thank my noble friend for that Answer. Before these cuts come in April the reality is that it is already very difficult to find an urgent mental health bed. Ten days ago in Kent, no emergency level 4 mental health beds were available. Given that the cuts in mental health services are 20% more than for hospital trusts and given David Nicholson’s statement last week that NHS England will not review them, what specifically can the Government do to remedy the situation?

[Earl Howe]

My Lords, my honourable friend Norman Lamb has expressed his concern that the cuts to the mental health tariff have taken the form that they have. I can tell my noble friend that the department will be scrutinising the commissioning plans of clinical commissioning groups and the draft budgets of mental health trusts to make sure that they reflect the central importance, as set out in the Government’s mandate to the NHS, of making measurable progress towards parity of esteem. We know that there are regional differences in access and we are setting up a new national mental health intelligence network to provide comprehensive and up-to-date information about mental health and well-being.

Medical Act 1983 (Amendment) (Knowledge of English) Order 2014

Baroness Brinton Excerpts

Tuesday 11th March 2014 Grand Committee

[Viscount Bridgeman (Con)]

My Lords, I rise with some diffidence as the first layman to address your Lordships in this debate. I, too, thank the Minister for his statement and pay tribute to his department for the leadership that it has shown in securing from the Commission the remedying of what was a glaring and potentially dangerous anomaly in the 2005 directive. The Commission has produced a very satisfactory outcome.

I believe the United Kingdom is among the first member states, if not the first, to incorporate the changes introduced by the revised directive into legislation. I note that the order is headed:

“Health Care and Associated Professions”.

I hope the new language-testing arrangements will be incorporated as early as possible into other branches of healthcare—I have nursing in mind in particular. I think it is the experience of many that nurses from the EEA are almost invariably pleasant, caring and considerate. They of course play a huge role in this country, but I know that many patients have had difficulty in communicating and in making themselves understood.

There are many reasons why this is a matter of some urgency, but I will suggest just one. I think I am right in saying that the practice of putting great emphasis on patients’ notes goes back a long way in the UK; possibly more emphasis than some other member states, even those with advanced healthcare arrangements. It is therefore all the more important that nurses from the EEA are proficient not only in spoken but in written English, a point which the noble Baroness, Lady Finlay, made in connection with doctors. As one facetious journalist put it,

“the difference between a microgram and a milligram is a coffin”.

I hope the Minister can give your Lordships the assurance that progress is being made in extending the provisions of the revised directive right across the healthcare profession, not least with nurses. I hope that this will include the fitness-to-practise hurdle, which is so important in reinforcing the ongoing responsibility of the relevant regulators for their members.

[Baroness Brinton (LD)]

My Lords, I am also a layman so the noble Viscount, Lord Bridgeman, need not feel completely alone. However, I preface my remarks by saying that my grandfather was the dean of St Mary’s Hospital Medical School. I remember him trying to explain to me why a bedside manner was not just about translating medical language but was all about speaking and listening. The one point I would add to the many that have been made by noble Lords this afternoon is the one about communication. A technical knowledge of English on its own is not enough—it needs to be one that picks up not just the body language but the nuance, including of regional language. If a Yorkshireman says he is “probably alright”, you know that you would want to question him further, whereas somebody coming from overseas might take that at face value.

I leave the rest of the medical comments to the medical professionals, who have spoken amply in that respect, and want to speak very briefly on freedom of movement in the EU. My party certainly believes that it is vital but—in true liberal tradition—it is fine up to the point at which it harms other people. It has been quite clear, certainly with one very celebrated case but also with others that may not have hit the public eye, that the capacity to cause harm is now at a level where action needs to be taken. These changes are well overdue and I am very pleased that they will set a new framework for the General Medical Council and restore confidence in foreign doctors from the EEA, wherever they are from and whatever level of language they have.

I end on the point that proportionate language competence must not only be checked but be checked more frequently than the BMA perhaps would like, because language and communication skills can get rusty.