Southern Health NHS Foundation Trust

Baroness Masham of Ilton Excerpts

Tuesday 3rd May 2016 Lords Chamber

[Baroness Masham of Ilton (CB)]

My Lords, where does Healthwatch come in? Should there not be far more openness and participation by the public to stop such things from happening? It is all very well having management, but one wants caring people from the community who will speak out on behalf of these people.

[Lord Prior of Brampton]

My Lords, this goes back to the culture of the trust. It is important that members of the public or Healthwatch have a right to go in and visit facilities, and that they are welcomed there, but that they do not go native at the same time—that they are truly independent, looking at it from the patients’ perspective. Healthwatch has an important part to play, and the relationship that it has locally with the CQC inspection team is very important.

Wheelchair Users

Baroness Masham of Ilton Excerpts

Thursday 21st April 2016 Lords Chamber

[Lord Prior of Brampton]

My Lords, I am afraid that I cannot answer that question as I do not know the answer. If it is all right to do so, I will write to the noble Lord and place the answer in the Library.

[Baroness Masham of Ilton (CB)]

My Lords, I declare an interest as president of the Spinal Injuries Association. Is the Minister aware of the very complex needs of some people who break their necks, are completely paralysed and operate a wheelchair by pushing the back of their head or by their mouth? Will he assure the House that the specialist hospital units are able to advise CCGs on this issue?

[Lord Prior of Brampton]

The noble Baroness raises a very important point. I will do what I can to ensure that we retain that specialist knowledge that can be provided to local CCGs.

Access to Medical Treatments (Innovation) Bill

Baroness Masham of Ilton Excerpts

Friday 26th February 2016 Lords Chamber

[Baroness Masham of Ilton (CB)]

My Lords, first, I congratulate the noble Lord, Lord Saatchi, on his indomitable determination to see something on the statute book concerning access to innovative medical treatments. I have been asked by the noble Baroness, Lady Gardner of Parkes, to say that she would have been here today supporting the Bill but has had to attend the funeral of a good friend, which clashes with today’s business.

My interest in this subject goes back some years, when my brother was dying too early. One was willing on his behalf to try to find something to help him survive. An innovative treatment can give hope if everything else has failed.

At the age of six, a young cousin of mine developed neuroblastoma—an aggressive childhood cancer. His parents did everything they could, including taking him for treatment to the Children’s Hospital of Philadelphia. He was the most resilient, brave boy and he went back to school, but the cancer won in the end and Jamie died at the age of eight. His case illustrates the desperate need for new treatments. I feel that the Bill, which has been so well presented to your Lordships by the noble Lord, Lord Saatchi, may help to drive forward more innovative medical treatments.

The noble Lord knows that I am keen to speed up the process of getting new drugs to desperately ill patients when the usual ones do not work. I am keen on innovation as long as it is safe and in the best interest of the patient. Do the noble Lord, Lord Saatchi, and the Minister think that the Bill is safe enough? I do not want patients to have added discomfort when they are desperately ill, but on the other hand where there is life there is hope, and something new might just help.

The other day I read about a woman who had a cancerous tumour between her ribs and had been told by her doctor to go home and live her life until she died—there was nothing that could be done. She did research on the internet and found a place in America which used CyberKnife for this problem. The money was raised, she had the treatment and now, eight years later, she is well and free from cancer.

The Bill is about having a database to collect data about things that work and things that do not work. Information is vital if there is to be progress. I hope that the database will become available worldwide. It is important, for the sake of patients, that information is shared, so that our people can benefit from countries that are doing better than us. It is depressing that our cancer survival rates are not as high as they should be compared to other countries in Europe. Why, for instance, is Sweden so much better than the UK?

Some time ago I met a remarkable man called Les Halpin, already mentioned by the noble Lord, Lord Saatchi. He had motor neurone disease and he had a passion to find a better way of treating MND. There was, and still is, a desperate need for access to drugs which may be able to help. Les died. People like Les cannot wait. MND takes most people very quickly. Les Halpin’s spirit lives on, and on Tuesday “Empower: Data4Health” was launched to collect data with the patient at its heart. Its aim is to get drugs which can help. I hope that “Empower: Data4Health” and the Bill will work together.

I have some questions about Clause 2. Subsection (2) states:

“The Secretary of State may by regulations make provision conferring functions on the Health and Social Care Information Centre (“the HSCIC”) in connection with the establishment, maintenance and operation of a database containing information about … (a) innovative medical treatments carried out by doctors in England, and … (b) the results of such treatments”.

Does this mean that the NHS will pay for the database? Will the NHS run it? It would be very interesting to know how it will work, if that information is available today. It needs to be open and transparent, with the patient at the centre. Who will be able to access the database? Will patients be able to?

It is time for progress to be made, but communication must be efficient and patients must be safe. There are always risks in life, but there must be safeguards against those who put cash before care.

--- Later in debate ---

[The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con)]

My Lords, it has been a fascinating debate. I was not here when we have had debates about this Bill or the Bill that preceded it, so I am not as familiar with the arguments as many noble Lords are. However, it has been a very insightful and high-quality debate.

I first thank my noble friend Lord Saatchi. This is his Bill really. Before I was in this place, I remember listening on the radio in a casual way to the arguments being batted around, and, without knowing the details of his earlier Bill, the need for a quantum change in the rate of innovation and adoption of new medicines and products in this country resonated with me.

I have just come back from a trip to the USA, and one always comes back feeling that there is such a sense of dynamism, speed and pace in America that we simply do not have in this country or in Europe, or anywhere else in the world. Partly, of course, that is because they have much more money in the US, but it is a state of mind. Even in a highly litigious society such as America, there is an entrepreneurial, innovative drive and that is something we need. We have so much research capability in this country and yet we seem to be so slow at bringing products to the market for the benefit of patients. The speech by my noble friend Lord Ryder absolutely nailed this issue once and for all.

I also thank Chris Heaton-Harris, who is still here—he has stood here throughout this whole debate. The work that he and my colleague in the Department of Health, George Freeman, have done to win cross-party consensus for this Bill has been hugely impressive. I also pay tribute to the noble Lord, Lord Hunt, who brought an amendment for a registry in the previous Bill. That has been changed in the new Bill but, nevertheless, has been very important in bringing the Bill to us today.

Before I come to my main speech, I will pick up a few of the particular questions asked by noble Lords. The noble Baroness, Lady Masham, raised the critical point in many ways, which is this balance between innovation and patient safety. That went to the heart of the debate on the original Bill. She raised a particular question about the guardianship of the database. The database will be established with a quality-control mechanism to ensure its oversight. HSCIC is very experienced in databases of this kind and it will have responsibility for that guardianship. It will establish an independent committee to overview the database to make sure that it will not breach patient confidentiality and the like. That is obviously critically important.

The noble Baroness also raised the issue of who could have access to the database. This may disappoint some noble Lords, but access to the database, certainly to start with, will be for doctors rather than members of the public. Again, that is largely based around the need for proper information governance and patient confidentiality. There is a risk, particularly with rare diseases, which the noble Lord, Lord Freyberg, raised, that individuals can be identified if one is not careful.

The noble Lord, Lord Murphy, and others raised the issue of off-label drugs. I can assure noble Lords that the database can include medicines being used off label as well as the use of unlicensed or off-patent medicines.

The noble Lord, Lord Patel, asked what was the definition of medical innovation—or “innovative medical treatment”, which is the right expression. The short answer to that is that, under the Bill, an “innovative medical treatment” is defined as,

“medical treatment for a condition that involves a departure from the existing range of accepted medical treatments for the condition”.

There is clearly a much longer, more technical answer to his question, but I hope that that will satisfy him today.

My noble friend Lord Blencathra raised a number of important issues. It will cost money to establish this database. The estimate is between £5 million and £15 million. That money will be found by HSCIC and ultimately through the Department of Health. Both my noble friend and the noble Baroness, Lady Masham, thought that it would be wonderful if this database could extend to the USA and worldwide. They are absolutely right—in time, but not immediately.

The noble Lord also raised an important issue about whether, if doctors put their results on to a database and they had failed, it would open them up to legal challenge. The establishment of the database will not change whether or not a doctor would face a successful negligence claim. If a doctor acts responsibly, they will not face a successful claim even if the outcome for that patient is negative. I hope that I will pick up other issues that were raised by noble Lords in what I had pre-prepared to say.

The Bill we have considered today is not the same as my noble friend Lord Saatchi’s original Medical Innovation Bill, but it shares the same desired outcome—to create a culture that promotes greater use of innovative medicines and gives us the best chance of improving outcomes for patients. In response to a point that my noble friend made in his introduction, it is very much going in the same direction as the accelerated access review, which is being conducted by Sir Hugh Taylor. We will see that later in the year. That will, of course, address some of the issues raised by my noble friend Lord Ryder.

The Bill before us today seeks to give doctors access to a database as a source of learning where they can both share their innovations and search for those that other doctors have used. The purpose of the database is to promote access to innovative treatments for patients by giving doctors access to information that they may not otherwise be aware of. Doctors will be able to search the database for innovations, see who else is using new techniques, and which ones are effective for patients. The database could ultimately result in better care and health outcomes for patients, and potentially in the fast uptake of new treatments which are shown to work.

I do not think any of us should be under the illusion that this is going to solve the problem; rather, this is us setting out our stall and saying how important the issue is. It will facilitate things, and it is a stake in the sand to show that we, the Government, and the country take this matter seriously. It is also important to state for the avoidance of doubt that the Bill does not contain any provisions relating to the law of clinical negligence. Those provisions have been removed and are not part of this Bill. The Access to Medical Treatments (Innovation) Bill is concerned solely with conferring a power on the Secretary of State to make regulations requiring the HSCIC to set up and manage a database of innovative treatments.

There are two matters that I would like to address in a little more detail, given the degree of discussion there has been around them. The first is how the database will operate and the consultation that will surround it. The detailed design of the database will be worked out by the HSCIC as the expert organisation in this field working in conjunction with professional and patient bodies, a point raised by the noble Baroness, Lady Masham, and others, and other interested stakeholders. On Report in the other place, the Minister for Life Sciences gave an assurance that should the Bill receive Royal Assent before the establishment of such a database, there will be a period of consultation to inform its detailed design. I would like to clarify that this would not take the form of a government consultation, but rather, engagement to be worked out jointly between the HSCIC, the relevant statutory bodies and stakeholders from the medical community representing those who will be using the database.

The second matter is compulsory recording in the database. I am aware that during the passage of my noble friend Lord Saatchi’s original Bill, the issue of mandatory recording and the data registry was the subject of lengthy debate. I know that the noble Lord, Lord Hunt, tabled an amendment seeking to ensure that doctors would be required to record all outcomes, positive and negative, in the registry. I also understand that the Government opposed the amendment on the basis that including a mandatory registry would change the test of negligence under the Bill. As has been covered extensively, the Bill we are discussing today differs significantly from the Medical Innovation Bill. On the issue of recording, it is important to highlight that the principal difference between the data registry and the database of innovative treatments is that the database will both capture and disclose information, while the data registry is concerned with the registration of a patient linked to a disease, or a specific cohort. Crucially, it is intended that information relating to innovative medical treatments and the outcomes of those treatments carried out by doctors in England will be passed to the HSCIC through the use of coding in patient notes.

While there is nothing in the Bill to compel doctors to record their innovations on the database, it is intended that policy guidance on implementation will be issued to providers of NHS-funded services requiring them to ensure that their staff record information on the database. The Government have subsequently liaised with NHS England as to whether this could be made a contractual requirement. NHS England has confirmed that once such guidance has been issued, it could consult on introducing a new condition in a future version of the NHS standard contract with the intention of making compliance with the guidance a contractual duty for provider organisations. Providers of NHS services need to demonstrate to their commissioners that they are complying with their obligations under the standard contract, so they would need to be able to show that they are implementing any condition that required doctors to record in the proposed database.

I hope that what I have outlined will satisfy noble Lords on the issues associated with mandatory recording.

[Baroness Masham of Ilton]

My Lords, before the noble Lord finishes, will he agree that the excuse of confidentiality can be a stifling block to innovation? Les Halpin was an example of openness. Surely patients and doctors should be sharing and working together. Therefore, they should have the information.

[Lord Prior of Brampton]

My Lords, all my experience over the last 15 years is that openness and transparency are critical to get improvement and innovation into the NHS, but we have to accept that patient confidentiality is also extremely important. If we in any way compromise or give people reason to think that patient confidentiality will be in any way intruded on, we may unwittingly undermine everything else that we are trying to do. We have seen that in other areas in the health service in the last year or so. We have to be very careful in this area, but I understand the importance of the noble Baroness’s point.

The Bill does not seek to add an extra burden on doctors, as the GMC’s guidance already sets out requirements on doctors to record their work clearly in clinical records. Doctors are required to have regard to such guidance as part of maintaining their licence. However, through the use of NHS contract guidance, doctors will be required by their providers to have regard to the requirement to record their innovations and, crucially, all associated outcomes.

NHS (Charitable Trusts Etc) Bill

Baroness Masham of Ilton Excerpts

Friday 26th February 2016 Lords Chamber

[Baroness Masham of Ilton (CB)]

My Lords, I am pleased to be supporting the “Peter Pan and Wendy” Bill, which concerns royalties from “Peter Pan” for Great Ormond Street Hospital. The Bill was ably taken through another place by Wendy Morton, Member of Parliament for Aldridge-Brownhills; this seems to be such a happy coincidence of names. The NHS (Charitable Trusts Etc) Bill was strongly supported by Members of another place.

The Bill has been very well explained by the noble Baroness, Lady Massey of Darwen, who for many years has been the chairperson of the All-Party Parliamentary Group for Children. The noble Baroness is very experienced in the needs of children. Legislation is needed to enable the right to those royalties to be given to the new independent Great Ormond Street Hospital Children’s Charity, to which the current NHS charity is in the course of being converted. There was a consultation and the outcome was that NHS charities should be allowed to convert to independence if they so chose, and that the Secretary of State for Health’s powers to appoint trustees to NHS bodies under the National Health Service Act 2006 be removed at the earliest legislative opportunity.

JM Barrie was one of the most generous donors in the history of Great Ormond Street Hospital Children’s Charity. The charity is keen to take advantage of the opportunity to move to independent status. Specific legislation is required to provide for the rights to “Peter Pan” royalties to be given to the new charity. This is a unique situation and a unique solution is required to enable the rights to the crucial royalties to be given to the Great Ormond Street Hospital Children’s Charity so that Great Ormond Street Hospital can continue to benefit from the generous JM Barrie bequest.

Many of your Lordships will have experienced heart-rending situations with ill children, some of whom will have recovered with the help of specialised medical care, which is what Great Ormond Street Hospital can give, but some will not have made it. Recently, I had a young cousin who developed neuroblastoma, an aggressive children’s cancer. He was one of the bravest and most resilient young people I have ever known. His parents did everything they could, as did the medical teams, which included a trip to America for treatment, but at the age of eight the cancer won and Jamie died.

Children’s hospitals need all the help they can get to treat such children and to continue their research for cures where there is none at the moment. I wish the Bill a speedy journey back to another place and on to the statute book.

Health: Zika Virus

Baroness Masham of Ilton Excerpts

Thursday 4th February 2016 Lords Chamber

[Lord Prior of Brampton]

My Lords, that strays slightly away from the brief that I have on the subject today. May I take that on consideration? I will raise it with my honourable friend in the other House, the Minister for Public Health.

[Baroness Masham of Ilton (CB)]

My Lords, are the aeroplanes coming from the countries where there are these mosquitoes being sprayed?

[Lord Prior of Brampton]

My Lords, that is something that is under consideration at the moment. It varies from airline to airline—that is the truthful answer at the moment—but we are considering whether all flights from areas that have Zika virus should be sprayed.

Failures of the 111 Helpline

Baroness Masham of Ilton Excerpts

Tuesday 26th January 2016 Lords Chamber

[Lord Prior of Brampton]

My Lords, the facts of this case demonstrate that a lot of things went wrong. That is the real tragedy of it. Had one of those things not gone wrong, the tragedy may not have happened. The noble Baroness referred in particular to medical education but it is wider than that. As I said, a whole stream of things went wrong and we must learn from that.

[Baroness Masham of Ilton (CB)]

My Lords, does the Minister agree that confusing messages are coming out? One is that antibiotics are being given too liberally. The other is that they are desperately needed for serious chest infections—and this boy had pneumonia, which was missed. Cases of meningitis are also missed. Such illnesses really need antibiotics. Does he agree?

[Lord Prior of Brampton]

My Lords, in a sense there are mixed messages—but there is a common-sense message here as well. We do not want to overuse antibiotics but, on the other hand, clearly where there is a serious infection, antibiotics are absolutely necessary. At one level it is a mixed message but there is a common-sense way through the two.

Health: Cancer

Baroness Masham of Ilton Excerpts

Wednesday 20th January 2016 Lords Chamber

[Baroness Masham of Ilton (CB)]

My Lords, I thank the noble Baroness, Lady Walmsley, for securing this short but very important debate. I declare an interest as a member of the All-Party Group on Cancer. On many occasions, I have been to presentations of cancer survival rates in Europe and it is alarming to see the UK near the bottom. I ask the Minister, why is this? Whatever happens, we must get better. Early diagnostics are vital.

On Monday evening, I attended a reception for the Lymphoma Association. I met a young scientist who told me the story of her brother. He was aged 26 and had just taken his exam for a pilot’s licence. He had swellings, excessive night sweats, weight loss and tiredness. He went to his GP three times but was told that he was suffering from stress from taking his pilot’s exam. Family members then took him to a private doctor and insisted that he had blood tests. The results came back and he was sent directly to St Thomas’ Hospital and told that he had cancer. Because it was a late diagnosis he had to have strong chemotherapy, which gave him many problems including depression. His career was in ruins and he is now a stay-at-home father.

Lymphoma is cancer of the lymphatic system, which is part of the body’s immune system. It is the fifth most commonly diagnosed form of cancer. Without consistent and reliable data, further opportunities to improve the diagnosis, treatment and aftercare for lymphoma will be missed.

The Minister knows my concern about the patchy provision of vital healthcare across the country. The vision of the British In Vitro Diagnostics Association is to have robust, fair and sustainable access to and provision of molecular diagnostics across England. Rapid advances in medical science and technology are transforming the way health problems are identified, prevented and treated. However, in the area of molecular diagnostics, further reform is needed to ensure that patients can realise the benefits of these tests and have equity across the country. I hope that NHS England will take note.

Proton beam therapy came to the public’s notice when the parents of a young boy with a brain tumour went to the Czech Republic for treatment. This showed that the UK was lagging behind other countries in targeted methods of treatment. The treatment allows high-energy protons to be targeted directly at the tumour, reducing the dose to surrounding tissues and organs. Can the Minister give us a progress report on the availability of this treatment in the UK? If London and Manchester are to be the chosen centres for this treatment, patients from all over England should be able to use it and should have help with travelling and accommodation.

National Health Service

Baroness Masham of Ilton Excerpts

Thursday 14th January 2016 Lords Chamber

[Baroness Masham of Ilton (CB)]

My Lords, there are some excellent specialist units doing exceptionally high-quality work with good leadership and splendid teams of skilled staff which are world-class, and patients are grateful for their correct diagnoses and care, but there are also hospitals which have inadequate equipment, lack of staff and leadership and poor morale. Patients are often misdiagnosed and have a poor standard of care, causing concern and lifelong problems. There should always be good communication, honesty and transparency. Patients should feel safe and have faith in those people looking after them.

The big question is how this can be achieved across the country when demands are growing and we have to rely so much on staff from other countries. It is refreshing when one finds keen, enthusiastic doctors who love their job. The present situation with dissatisfied junior doctors is very concerning. A satisfactory solution must be found.

Patients who have had an operation and are in need of rest and recuperation should not be subject to a noisy and stressful environment. They need a well-organised, peaceful ward with a responsible sister in charge, so many people say, “Bring back matron”. Many people across the UK are anxious about the money spent on agency staff, who cost a monumental amount of funds and may not have the necessary commitment. This situation is milking the NHS.

It is vital that infection control is treated as a priority in the NHS. It will come to the fore as antimicrobial resistance comes to dominate acute hospital care. The UK had the global lead in infection control, appointing the first specialist infection control nurses. If they suffer cuts, it will be a disaster.

Worldwide, the lives of billions of people are affected by zoonosis, diseases transmitted from animals to humans. This is an immense public health problem. Bush meat, which is meat that comes from wild animals captured in developing regions of the world such as Africa, was the origin of HIV and Ebola. Thousands of tonnes of bush meat are coming into the UK each year. It is illegal to bring bush meat into the United States of America; it is very strict. Should we not do likewise? One never knows what dreadful diseases are around the corner.

Health: Liver Disease

Baroness Masham of Ilton Excerpts

Wednesday 9th December 2015 Lords Chamber

[Lord Prior of Brampton]

My Lords, I understand that that is precisely one of the issues that the responsibility deal has studied and addressed.

[Baroness Masham of Ilton (CB)]

My Lords—

[Lord Brooke of Alverthorpe (Lab)]

My Lords, may I quickly return to the issue of minimum unit pricing, because—

[Noble Lords]

Order!

[Baroness Masham of Ilton]

My Lords, thank you. Is the Minister aware that the UK is the worst country in Europe for liver disease? Is he not rather worried about cutting funds for public health?

[Lord Prior of Brampton]

My Lords, we clearly have a major problem with liver disease—I think that we can all agree on that. The report by the Lancet commission has some very useful recommendations that we must take seriously. It is true that other countries in Europe have had more success in tackling this. I cite France as a case in point. We will take on board the number of recommendations made by the Lancet commission, as well as other initiatives we are taking.

Sex-selective Abortion

Baroness Masham of Ilton Excerpts

Monday 7th December 2015 Lords Chamber

[Lord Prior of Brampton]

My Lords, I am not aware that we are giving consideration to that, but I will find out and write to the noble Baroness.

[Baroness Masham of Ilton (CB)]

My Lords, can the Minister confirm that unborn babies are covered by the discrimination Act?

[Lord Prior of Brampton]

My Lords, I am afraid I cannot confirm or deny that. I will write to the noble Baroness.