HIV: Late Diagnosis

Baroness Masham of Ilton Excerpts

Monday 1st December 2014 Lords Chamber

[Earl Howe]

It is far too early for me to say how the new money will be spent. In any case, that has to be a decision for commissioners weighing up the healthcare priorities that face them. But the new money is excellent news for the NHS, and there will be a Statement later today about that.

[Baroness Masham of Ilton (CB)]

My Lords, how many undiagnosed people with HIV does the Minister think there are? Would it not be beneficial to have testing of HIV, TB and hep C all together to save money and to pick up more infections?

[Earl Howe]

I shall have to take advice on the second question posed by the noble Baroness, which I do not know the answer to. But in answer to her first question, an estimated 107,800 people were living with HIV in the UK in 2013, of whom 24% were unaware of their infection, remain at risk of infecting others and are unable to benefit from effective treatment. That is why it is so very important that we target the at-risk communities to urge them to get tested, either in a clinic or through self-testing kits, which are now legal.

NHS: Five Year Forward View

Baroness Masham of Ilton Excerpts

Monday 1st December 2014 Lords Chamber

[Earl Howe]

I do not think one can develop a consensus prior to a government Statement—that is probably wishing for the moon. The charge that the noble Lord levels against the Government is also, if I may say so, misplaced. We have never pretended that all the money being announced today is new money. I do not seek to suggest that, as I have already explained. As regards the timing, I think it is standard practice for key elements of the Autumn Statement to be trailed ahead of the formal announcement. However my right honourable friend the Chancellor will confirm everything we have said today in the Autumn Statement on Wednesday, and that is as it should be.

[Baroness Masham of Ilton (CB)]

My Lords, the Minister has not said anything about specialised units. I declare an interest as president of the Spinal Injuries Association. Spinal units are vitally important when patients need treatment, yet some spinal units have cut the services of physiotherapists and occupational therapists, who are vital for rehabilitation. The answer is always, “It is up to the trusts”. The trusts can be wrong and in this case they are. Can the Minister give an assurance that there will be enough trained doctors, nurses and therapists for the next five years in spinal units?

[Earl Howe]

My Lords, I will have to take advice about that question. What I can say is that we now have in place a system of workforce planning that is better than its predecessor. I do not think there can ever be such a thing as a perfect system of workforce planning. We now have a national body, Health Education England, that is responsible for making sure that we have adequate numbers of professionals with the right skills. However, we also have local education training boards whose members include representatives from the acute trusts. It is up to those boards to make clear what the requirements are for trained staff and feed those requirements up to Health Education England so that planning over the coming years can be done in a rational and sensible way. I would expect that spinal units should make their case in that fashion so that if there is a need for physiotherapists in spinal units, and those physios are—for any reason—not available, then they will come forward in adequate numbers in years to come.

Medical Innovation Bill [HL]

Baroness Masham of Ilton Excerpts

Friday 24th October 2014 Lords Chamber

[Lord Winston (Lab)]

My Lords, this is a surprisingly complex Bill, and indeed the various amendments that have been tabled in the first group conflict with each other. As a consequence I will concentrate on only a few of them in order to get some clarity. The noble Lord, Lord Saatchi, talked about clarity and certainty when he introduced the Bill, but I feel that the whole of this Bill will increase lack of clarity and promote uncertainty on the part of patients, which is something that really concerns me. I must also say that, as it stands, I believe that the Bill is quite dangerous. I say that with great respect to the noble Lord, Lord Saatchi, to whom we are grateful for introducing something of this kind.

I should say to the noble Lord at the outset that all of us who work as medical practitioners and scientists want to see innovation. No one could doubt that, as my noble friend Lord Turnberg pointed out. My entire career in the health service spanning 40 to 50 years has been a constant series of innovations, and I have to say that never once have I looked over my shoulder and thought that there might be a risk of litigation as a consequence of my innovating. That seems to be the reasoning behind the purpose of this Bill, but I believe that the noble Lord is mistaken in his view that practitioners are concerned about litigation because of innovation. They are certainly concerned about litigation, but they are not concerned because they are trying to do things which they can clearly claim are in the interests of their patients. That is a really big problem.

Had the noble Lord, Lord Saatchi, along with his noble friend the Minister of health, decided to focus on certain other aspects, I would have argued that some of the permissions for research ethics would have been a very important issue to look at. They are increasingly inhibitory. I would also cite some of the problems that have arisen out of the Human Tissue Act 2004, which was introduced by a Labour Government. There is a number of other issues that could have been looked at, such as the fitness to practise regime of the GMC, which the noble Lord mentioned.

However, let me concentrate on the Bill. I will start with Amendment 17. The noble Lord, Lord Pannick, introduced some of the questions and I want to deal with those in a bit more detail. I must suggest that anybody who has a sensitive disposition leaves the Chamber at this stage because I am going to describe personal experiences, which, I have to tell your Lordships, are unpleasant. I can give endless examples but will confine myself to two cases of maternal care. In doing so, I declare an interest as the chairman of the Genesis Research Trust at Imperial College and, of course, as a formerly practising gynaecologist.

When I was in training in a district general hospital in Essex, I was confronted in the middle of the night with a woman who started to bleed torrentially after birth. The blood went completely over the obstetric ward floor and then started to leak out under the sill of the floor into the corridor beyond. It was very clear that no matter how fast we transfused this patient with all the blood we had available, and eventually with O negative blood, this woman was going to exsanguinate and there was absolutely nothing one could do about it. I tried an innovative procedure with that uterus that was not described in the literature but had I not done so, that patient would have died.

I have to say to the noble Lord, Lord Saatchi, that, unlike him, I have tangled with innovation throughout my life. I have had sleepless nights; I have had trembling hands when facing patients who might die because I knew that I had to take a decision on the spur of the moment that might make the difference between life and death. Amendment 17 is partly concerned with that, and if we do not press it today, I think we will need to reconsider it on Report.

I will tell the noble Lord another story. This is pretty graphic as well. I was called in the middle of the afternoon to a case in the casualty department of the district general hospital where I was working as a registrar in training with about five years’ experience. There was a woman—barely a woman; a girl, really, just out of her teens—who was lying virtually unconscious on a trolley in the emergency department. There was no relative with her, there was no history with her; there was no way of knowing what was the problem.

When I examined her very quickly, I noticed that her breasts were somewhat active and her abdomen was distended, and it became likely that she might have a pregnancy but of course there was no way of verifying that. There would not be time to do a test because this woman was lapsing into unconsciousness; indeed, as I was examining her, she became unconscious and her blood pressure dropped to unrecordable levels. I put her on a trolley and ran down to the operating theatre with it. I had asked them to call an anaesthetist to help me. When the anaesthetist arrived, who was a much more senior doctor than I, he refused to have anything to do with the treatment of this patient. He was not prepared to consider anaesthesia for this woman because he felt that that would not be appropriate for somebody who was already unconscious.

I do not say this out of any sense of pride or because I am being all-powerful but this is simply how one acts in an emergency. Without scrubbing up—with unclean hands, simply with gloves on—I took a knife and opened her abdomen briskly and tied off the bleeding point. It was an ectopic pregnancy and once we had removed the bleeding point her blood pressure immediately became recordable. That woman left hospital seven days after the procedure.

Had we gone through any of the procedures that are described in the Bill, I have absolutely no doubt that that unmarried 21 year-old girl would have died there on the table, and I would have been haunted by that had I not innovated in a way that was appropriate. It was only when the abdomen was open and the blood was welling out that my anaesthetist put a tube down her throat and assisted me with the anaesthesia. He was not frightened of litigation; he just thought that the patient was going to die.

In Amendment 17 I have delineated a few of the examples in medical practice where there is a real case for not innovating. I could argue—I notice the noble Lord, Lord Kakkar, is in his place and I hope he will agree with me—that every single one of your Lordships in this Chamber will have different anatomical variants in your abdomen. For example, if you are undergoing a hernia operation, the skill of the surgeon in trying to decide what the variant might be is something that he needs to tackle immediately and without consent of either an ethics committee or a group of doctors who might give him permission to do so. It is a nonsense to suggest that a surgeon needs to do that sort of thing in the process of innovating in surgical care. That is also true for neonatal care, where of course we do not have very good chances sometimes of deciding when a very small baby is on the point of death. There are many other examples. I would just argue that there is one rather exceptional case, which I have alluded to, which is in reproductive medicine.

In my view, that is a different situation. The risk is that if we encourage innovation, as we are inclined to do and as is happening in private practice at the moment for quite large fees, there is a real risk in the long term. For example, this week two companies have offered to freeze the eggs of their employees to try to delay their childbearing. It sounds a very humanitarian thing. It is not, it is a purely business proposition. What they are doing, of course, is trying to manipulate their female employees by doing this. But the doctors who are prepared to charge substantial sums of money for this freezing have not considered the real success rate that even young women who freeze their eggs have. In the United Kingdom, around 7% of patients who have had their eggs replaced actually have a pregnancy, and we do not even know how many of those pregnancies go on.

During that treatment, there are different ways of freezing eggs which are innovative, which have not been properly tested and which may, for all we know, have epigenetic effects 50 years on, when there may be a risk of high blood pressure, heart disease, osteoporosis or dementia. Indeed, we now know from some animal experiments that there are genuine incursions into the human embryo and the human egg, which in animals certainly cause very interesting but rather alarming changes in the central nervous system as a result of what is happening innovatively in humans. Of course, we cannot prove it in humans because we have to wait for a long time. I argue that Amendment 17 is essential but I suspect that more aspects of medicine will need to be covered in the Bill.

I support completely the amendment of the noble Lord, Lord Turnberg, who started the debate this morning. If he decides to press that amendment, I will certainly join him in a vote. The problem I will have, of course, is that part of that amendment, and certainly some of the implications of it, conflict with my Amendment 30, which argues that we should have clinical ethics committees. In my view, there is a strong reason to do that. I know that the Minister is very unlikely to accede to that request but there is a real issue about having better supervision of clinical treatments. We have research ethics committees but they are totally different. They do not cover routine practice. It is not a matter of simply leaving it to the General Medical Council. That is really not adequate. It needs to be dealt with locally and by the people who are concerned with the particular population with which they are involved.

I do not intend to go on at great length about the amendments in detail but there is no question that we will need to come back to some of them; others we may even wish to divide the House on this morning. But for the moment, I think I have said enough about those amendments.

[Baroness Masham of Ilton (CB)]

My Lords, my Amendments 14, 18 and 34, on safeguarding, are in this group.

Since the previous stage of the Bill, the deadly Ebola infection in Africa has hit the headlines and the need for fast-track innovative medicines and vaccines has become vital, as has the need for countries to come together to help support and educate suffering populations. In addition, last Tuesday the “Panorama” programme showed the innovative research being done on the spinal cord to enable paralysed people to walk. It is encouraging to see experts across countries working together.

--- Later in debate ---

[Baroness Masham of Ilton]

My Lords, I support what the noble Lord, Lord Blencathra, has said. The use of drugs seems much more flexible in the private sector than in the National Health Service. I ask the Minister to look very closely at the funding of these drugs if they are to be accepted in the Bill.

[Baroness Wheeler]

My Lords, I am pleased that Amendment 28 has been grouped with the amendment of my noble friend Lord Winston and the noble Lord, Lord Pannick, as we have considerable sympathy with their attempts to define innovation. I understand that it is a probing amendment. We consider that the Bill would benefit from a clearer understanding of what we mean by innovation and indeed of some of the exclusions that would apply that were referenced in the earlier comments on Amendment 19. I am grateful to my noble friend Lord Giddens. His perspective on that was helpful. I look forward to the response on that.

Amendment 28 is also a probing amendment and underlines that medical innovation and the adoption of new treatments require the whole NHS to make both research and innovation its business. The Secretary of State, the NHS regulators and all the key NHS bodies have a clear responsibility and the authority that they need; they need to use it. We have had many debates in this House that recognise the scale and pace of innovation taking place across the NHS and the frustrating barriers that prevent innovative treatments being adopted.

The noble Lord, Lord Saatchi, considers that doctors’ fear of medical litigation or disciplinary proceedings is a key factor that,

“reinforces a culture of fear and defensive medicine in the NHS”.

Whether medical litigation evidence supports that or not, we need to keep emphasising that it is just one of a number of barriers that have to be overcome. I know that the noble Lord recognises this as the context for his Bill. As Sir Robert Francis QC puts it:

“The real obstacles to responsible innovation are not to be found in the Bolam test but in the minefield of regulation and bureaucratic inertia which doctors presumably have to surmount, not to mention the reluctance to fund innovative treatment”.

The contribution of the noble Lord, Lord Blencathra, underlines that we are far too slow in this country to introduce new treatments.

The Health Research Authority is still yet to make a real impact on speeding up the painfully slow, complex and bureaucratic process of getting innovation in care and treatment adopted in the NHS. There is huge frustration across the NHS that existing pathways and mechanisms are not being fully used, such as the single portal of entry and single application procedures for clinical trials. NHS trusts’ slow implementation of the UK life sciences strategy, Innovation, Health and Wealth, and the very low level of awareness and action that they have taken on that strategy are continuing causes for concern.

Most important too is the role of Health Education England in ensuring that innovation and research are incorporated into the education and training of key medical and other health staff. The excellent vision report from the Association of Medical Research Charities, which my noble friend Lord Turnberg takes every opportunity to raise and endorse, showed the huge challenges we face in building support among doctors and patients for participating in research that leads to innovation.

As research and innovation go hand in hand, we were keen to include reference to research and innovation in our amendment, but I hear what has been said by the noble Lord, Lord Saatchi, and the Minister on this. I note that the Medical Defence Union, while now supporting the changes the noble Lord, Lord Saatchi, has made to the Bill, also makes the point about the importance of research being included because that is where most innovation takes place. It is concerned on this issue because it feels that many doctors are likely to be uncertain about whether the Bill would apply to innovation they are contemplating. This may hold up a proposed treatment or procedure while they check the position. In most cases, the Bill will not apply. Even where innovation arises out of a research project, doctors are likely to want to ensure that information gathered in treating the patient contributes to overall research in that area, and the MDU is concerned that the wording of the Bill may prevent that. I would be grateful for comments on this point from either the noble Lord, Lord Saatchi, or the Minister.

Our amendment seeks to place the Bill in the context of the duty of the Secretary of State and the key bodies of the NHS to support responsible innovation in medical treatment and makes it clear that that is the overall purpose of the Bill. I would welcome a response from the noble Lord, Lord Saatchi, on whether, despite his desire to keep the Bill short, he considers that a clear definition of the core concept of innovation, as the noble Lord, Lord Pannick, said, could be incorporated into the Bill as a reference to its overarching purpose. I would also appreciate the Minister’s comments on this.

NHS: Health and Social Care Act 2012 Reforms

Baroness Masham of Ilton Excerpts

Wednesday 22nd October 2014 Lords Chamber

[Earl Howe]

The noble Lord raises a very important issue, which results from the fact that commissioning decisions are taken not by the Government but by clinical commissioners across the service. We are very concerned by the reports of lower resources being channelled into mental health services. A lot of work is going on, in my department and in NHS England, to make sure that those services—and, crucially, the outcomes from those services—are maintained.

[Baroness Masham of Ilton (CB)]

My Lords, how much was paid out in redundancy to health service staff who lost their jobs and were then taken on again? Is the Minister aware that emergency medicine and accident and emergency departments are really overstretched?

[Earl Howe]

The noble Baroness asks two questions. We had to abide by the terms of the contracts of employment which were put in place by the previous Administration. In some cases, people were made redundant and were then re-employed by the health service at a later date. No one can take satisfaction from that, which is why we are completely revisiting the terms of those contracts. As regards accident and emergency departments, we know that the NHS is under pressure, but there are now more accident and emergency doctors than there were in 2010. The work being done by Sir Bruce Keogh to look at the system across the piece will, we trust, address a number of the pressures that the NHS is now experiencing.

Health: Secondary Care

Baroness Masham of Ilton Excerpts

Thursday 26th June 2014 Lords Chamber

Asked by

[Baroness Masham of Ilton]

To ask Her Majesty’s Government what steps they will take to help to remove barriers to access to secondary care for symptomatic patients so they are identified and can start treatment earlier.

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

My Lords, GPs act as the gateway to and co-ordinator of patient care. GPs hold patients’ medical records and understand their health history. The GP will be able to work with patients and their carers to make an informed decision about whether a specialist referral is necessary, and to recommend appropriate hospitals or clinics. Early diagnosis can improve outcomes and treatment. We are therefore raising awareness of key symptoms and supporting GPs to assess patients more effectively.

[Baroness Masham of Ilton (CB)]

My Lords, I thank the Minister for his reply. Is he aware that some GPs are being penalised by CCGs for sending patients on for diagnosis? Is that not totally wrong and does it not cause late diagnosis, which is always more expensive in every way?

[Earl Howe]

My Lords, I agree with the noble Baroness that early diagnosis is vital for just about every condition one can think of, particularly cancer. I am not aware that GPs are being penalised. I am very concerned to hear that, and if I may I will take the point she has made back with me and write to her about it. I would be very concerned if that practice was taking place. Particularly on cancer, we are keen to see GPs referring more. Indeed, that is what they have been doing, quite markedly, over the past four years: there was a 51% increase in cancer referrals over that period.

National Health Service

Baroness Masham of Ilton Excerpts

Tuesday 17th June 2014 Grand Committee

[Baroness Masham of Ilton (CB)]

My Lords, I thank my noble friend Lord Crisp for obtaining this debate and for all that he does in promoting better health globally. I have heard the Government say so many times that we should have a patient-centred NHS, but two weeks ago, when I chaired a session at the Westminster Health Forum, one of the delegates brought up a problem that some commissioners are not co-operating and working with the third sector, which did not feel welcomed. It is important that everyone working for the good of the NHS should work together and communicate with one another. The NHS should appreciate voluntary organisations for all that they do.

This year, we celebrate the 40th anniversary of the Spinal Injuries Association, which is a self-help organisation. I quote a rhyme:

“Humpty Dumpty sat on a wall,

Humpty Dumpty had a great fall;

All the king’s horses and all the king’s men

Couldn’t put Humpty together again”.

I feel that we who are spinally injured, resulting in paralysis, are Humpty Dumpties. Across the world, expert neurologists and orthopaedic surgeons have not been able to mend or regenerate the spinal cord. Our full members of the SIA are spinally injured people, but we work together with our associate members. We always felt that the voice of our members should be heard and not diluted by others who had not experienced being paralysed and all the difficult consequences that follow.

SIA does its best to support its members. It publishes information, trains lawyers on the needs of paraplegia and works with interested professionals. It has a library, peer support for new members and a helpline. It campaigns for the much needed specialist services. There is also a parliamentary group.

There is a need for ongoing research so that one day a way of mending and regenerating the spinal cord will be found. We are vulnerable Humpty Dumpties. We have unfortunate accidents too easily. I have broken my legs in three separate incidents, including one getting stuck in a fire door in your Lordships’ House. More recently, last Tuesday, my friend and colleague, the noble Baroness, Lady Wilkins, went to use a lift in another place. The lift was not level, with a substantial drop on the inside. The noble Baroness did not see this and fell from her wheelchair. She was picked up by two Members of Parliament. Not knowing whether anything was broken, she went to the Charing Cross A&E department at about 10 pm. She was not seen until about 3 am, by which time her condition had deteriorated, and she was not in bed until 5 am. The clerk who took details in A&E, when told that the noble Baroness is a paraplegic, had said, “What is that?”. Unfortunately, the noble Baroness has fractured her femur and both legs. There are complications from being paraplegic and having weak bones with a Humpty Dumpty body.

I give this as an example of how important it is that citizens and patients are given more power in the NHS so that their needs are heeded and understood and that specialist services are available when needed. There is a desperate shortage of spinal beds at the moment, especially at Stoke Mandeville Hospital.

As a citizen, the noble Lord, Lord Fowler, is an advocate for people with HIV/AIDS. He has just written a book, AIDS: Don’t Die of Prejudice. The Patients Association, of which I am a vice-president, is about to launch its “one million voices” campaign concerning what the public think of the NHS. Relatives did speak out about the disastrous situation at the Mid Staffordshire NHS Foundation Trust, but they were not listened to. How are the Government going to change the culture of professionals not listening to worried people? There should not be fear of giving citizens and patients more power in the NHS. They are the people who can change attitudes and will support the NHS.

National Health Service: Nursing Staff

Baroness Masham of Ilton Excerpts

Monday 16th June 2014 Lords Chamber

[Earl Howe]

The noble Lord is right. The Government recognise the very important contribution that community nurses make in providing high-quality care to people within community settings. I think we have seen a reaction, as I have said, to the Francis report. Lots of hospitals say that they are going to employ more nurses on the wards. We now need to ensure that staffing levels are safe across the NHS and the community, and the Chief Nursing Officer has set up a working group which is looking specifically at what we can do to increase the number of community nurses, which we certainly need to do.

[Baroness Masham of Ilton (CB)]

My Lords, does the Minister agree that specialist nurses are not being replaced when they retire and that there is great concern about this as they do such valuable work for many specialties?

[Earl Howe]

I acknowledge the valuable role played by specialist nurses in a number of disciplines but, once again, it is up to employers to exercise their responsibility to manage turnover, retention, recruitment and skill mix to ensure that they have sufficient workforce supply to meet the levels of staffing that the hospital or organisation needs. Here again, patient safety is paramount.

Healthcare Professions: Regulation

Baroness Masham of Ilton Excerpts

Tuesday 10th June 2014 Lords Chamber

[Earl Howe]

I recognise the importance of the issue that the noble Lord has raised. Some of those issues are extremely troubling. However, I do not have an up-to-date position on the policy position that the Government are taking but I will write to the noble Lord about that.

[Baroness Masham of Ilton (CB)]

My Lords, is the Minister aware that clinical physiologists desperately need full registration? They have had voluntary registration for some years and they say it does not work.

[Earl Howe]

Yes, my Lords, I am aware of the request by the physiologists, and I will write to the noble Baroness on the up-to-date position.

Elderly People: Abuse

Baroness Masham of Ilton Excerpts

Wednesday 14th May 2014 Lords Chamber

[Baroness Masham of Ilton (CB)]

My Lords, I thank the noble Baroness, Lady Cumberlege, and congratulate her on securing this vital debate. Parliament is about to prorogue and I hope that your Lordships will take with you the realisation that there is abuse of elderly people across the country.

Going back some years, I received a letter from an elderly lady in a care home in Leeds. She was desperate. She said that she was a prisoner in a room with an alcoholic; the staff were inadequate; and urine was left in the room. Her letters were read and so the one that she sent me was smuggled out by a friend. I knew someone on the health authority, whom I contacted. When the lady wrote to me again, she told me that she had been moved to a care home in Harrogate and that it was like going from hell to heaven. There is much variation across the country.

On watching the recent “Panorama” programme on abuse in a care home, I am concerned that it is the press that is highlighting these matters. Promoting one of the worst abusers illustrated that the management must have had its priorities completely wrong and did not know what was going on. I wonder what the response of the CQC is on this matter.

I hope that the Minister will update us on the protection of whistleblowers, the people on the ground who know what is going on. Many people are frightened of losing their jobs if they report misdoings. There should be openness and honesty, and protection of those people who speak out on behalf of vulnerable elderly people. Does the noble Earl agree?

Age UK supports the Government’s vision of the “open care home”. So do I. Care settings should never be closed off from the outside world. I am pleased that Age UK is currently developing a toolkit for local partners to enable them to implement and evaluate comprehensive procedures and training for staff, volunteers and trustees in order to prevent neglect and abuse.

There is often neglect and abuse of disabled elderly people who have difficulty in eating and swallowing. No one should be denied food and drink when they need and want it. There is often hidden abuse in the community behind closed doors, when vultures can be waiting for elderly relatives to die. We need to develop a more caring, kind and understanding society.

I consider discrimination against elderly and vulnerable people a form of abuse. The gift of life should be respected at all times, but it needs the right people in the right place to care for them.

Health: Innovative Medicine

Baroness Masham of Ilton Excerpts

Tuesday 1st April 2014 Lords Chamber

[Baroness Masham of Ilton (CB)]

My Lords, I thank the Baroness, Lady Thomas of Winchester, for obtaining this debate and I congratulate her on all she does for people with muscular dystrophy. I also congratulate the All-Party Group on Muscular Dystrophy on its report on access to high-cost drugs for rare diseases. I know first-hand how desperate it can be when someone one knows and loves needs a drug that may not be registered but may help them in a deteriorating situation. To quote from the report:

“To ensure that patients with rare diseases are not denied vital and cost-effective treatments we need to see the NHS develop a new model with regulators and the industry”.

There are many people across the country who have rare conditions and need specialist treatment. There are many parliamentary groups dealing with particular diseases, illnesses and disabilities. The message I get from them all is that the delivery of services is patchy across the country. The message that I get from the Government is that services should be dealt with locally. However, the National Health Service should at least have national minimum standards and the guidelines set out by NICE should be adhered to.

I agree with the statement in the report that the Government should establish a ring-fenced fund for rare disease drugs to ensure that patients affected by rare diseases are not denied treatment. Is there not such a fund in Scotland? In England, the cancer drugs fund has been of great help to people with rare cancers. There was also a recommendation about ensuring that NHS England provides specialist centres equipped with an appropriate range of health professionals to deliver treatments. If patients do not get the correct diagnosis, treatment and advice, their condition nearly always gets worse and there is so much suffering and anguish.

I am always concerned when I hear it said that people with long-term conditions should be treated at home. They need the very best diagnosis and treatment, and to be taught how to manage their conditions by experts before going home. All interested parties should work in communication and co-operation to help the patients. Some of these conditions mean a shortened life, therefore patients should have the best quality possible for that life—and that means expert treatment and advice, and ongoing support when needed.

I stress how important specialist nurses are to these people who have rare conditions or complicated diseases. They are a vital support to consultants and patients, as well as teaching patients’ families and general nurses how best to look after those with special needs. They are the link between hospital and the community, so not to have them is false economy. I met a splendid group of specialist nurses last week, who told me that morale among nurses is not good. This is bad for patients. One of the reasons, they told me, was the shocking situation which happened at Mid Staffordshire NHS Foundation Trust and other tragic events. Yet another recent incident was highlighted over the weekend, but I can only praise the specialist nurses I have met, who are dedicated to helping their patients achieve the best possible life, often in very challenging situations. I hope that the Minister will agree that specialist nurses are essential.

There are so many rare conditions which need research that can give hope for the future. Approaches which undervalue new treatments can impede innovation, distort therapeutic decision-making and undermine global welfare. We need progress, not limitations.