Oral Answers to Questions

Jim Cunningham Excerpts

Tuesday 23rd October 2018 Commons Chamber

[Caroline Dinenage]

We are really supportive of the Hidden Half campaign, run by the NCT—my colleague the Minister met the trust last week. We must ensure that we are supportive of new mothers’ health needs.

[Mr Jim Cunningham (Coventry South) (Lab)]

What improvements have emerged in relation to prostate cancer treatments?

[Caroline Dinenage]

I am really pleased that the hon. Gentleman has raised that. Clearly, early screening is fundamental and one of the key pillars of what we want to focus on with cancers. Prostate cancer affects so many gentlemen up and down the country, and we know that that early detection is the difference between life and death.

Social Care Funding

Jim Cunningham Excerpts

Wednesday 17th October 2018 Commons Chamber

[Barbara Keeley]

We do need to address that. Things have come to a pretty serious pass.

[Mr Jim Cunningham (Coventry South) (Lab)]

Following on from that point, one issue I have raised on a number of occasions in this House is the lack of local authority funding for social workers. We end up with a situation where people cannot be released from hospital—we used to call it bed-blocking. Does my hon. Friend agree that this is causing major problems both for local authorities and the patients concerned?

Baby Loss Awareness Week

Jim Cunningham Excerpts

Tuesday 9th October 2018 Commons Chamber

[Victoria Prentis]

I gesticulate at my hon. Friend, who has joined us so enthusiastically in championing that issue.

We would not be where we are today were it not for the support that we have received from the Government, especially the Ministers in the Department of Health and Social Care, and, indeed, the hard work of the charities that work with us. This year is particularly special for Sands, which is celebrating its 40th anniversary. I am very proud of my constituent Karen Hancox, who has worked so hard for Sands in Oxfordshire since losing her first daughter, Kayleigh, in 2008. She was responsible for lighting up Banbury cross in memory of Baby Loss Awareness Week last year, and she also helped with the fantastically helpful service in St Mary’s, Banbury last year, which we are repeating this Sunday, and at which I hope any hon. Member passing on the M40 will join us.

[Mr Jim Cunningham (Coventry South) (Lab)]

I want to take the opportunity of this intervention to congratulate the hon. Member for Eddisbury (Antoinette Sandbach), who has been tirelessly campaigning on baby loss for many years now. I have listened to these debates before and they are very difficult for everybody, even those who have no experience of baby loss. I can remember the issues around cot deaths, when women were charged and accused of perhaps harming their babies. But there is also the fairly recent problem—I think there are some ongoing investigations and prosecutions—where parents have lost their child at birth but still do not know the reason for that. I congratulate the hon. Member for Eddisbury once again for her tireless work in this area.

[Victoria Prentis]

I thank the hon. Gentleman for his intervention, and, if I may on behalf of my hon. Friend the Member for Eddisbury (Antoinette Sandbach), I thank him for his kind words.

The hon. Member for Nottingham South (Lilian Greenwood) mentioned the issue of inquests into stillbirths. I have been leading on that area in the all-party group because of my previous legal background and the fact that I spent much of my legal life conducting inquests on behalf of the Government. There is a current private Member’s Bill on this issue. It is a very broad Bill; the Member in charge likes to refer to it as the hatched, matched and dispatched Bill, which gives some idea of its scope. This is an extremely difficult and sensitive area both legally and in terms of the messaging. Many interest groups are concerned that it touches on the law about abortions and the law about when babies become beings and part of society, but there is no need for much of that discussion in this debate; it does not in fact need to touch on those terribly difficult issues. We in the all-party group are working hard with the Department and the Ministry of Justice, which is also very involved in this, to push this issue forward and to try to ensure that that does not happen and that we are able to address any concerns in the very small number of cases where an inquest would be helpful and extra transparency is needed. I know from my own experience that inquests are very hard for families. The Scots are also working in this area, and, give us time, as next year we may have some announcements, I hope.

Returning to Sands, I want to mention the brilliant work of my constituent Karen. She is one of the 40 volunteers to be nominated as part of the charity’s anniversary celebrations, and I am looking forward to welcoming her to Westminster later this week at our parliamentary reception. I am also very much looking forward to the service we are having in St Mary Undercroft on Thursday and I encourage anybody who works in this House, whether as a Member or peer or any of our staff, to come to that service. It is extremely warm and friendly; everybody might weep throughout, but in a positive way.

I must also praise the BBC—wow, two Conservative MPs praising the BBC in successive speeches—for highlighting our awareness week. The slot on “The Chris Evans Breakfast Show” this morning meant I had to stop the car; it was about the amazing bereavement midwife Nicola Taylor and a couple she helped around the birth of their three babies, and it was incredibly powerful. Fiona Crack’s story is currently on the BBC website. If any Member’s concentration wavers in this debate, I ask them to look at it, or perhaps better to do so when they get home tonight. “Woman’s Hour” is also handling this issue extremely sensitively and well.

I want to touch on three points this evening. First, the bereavement care pathway is, as my hon. Friend the Member for Eddisbury said, a real success. I received some brilliant care but also some less good care when our baby died 18 years ago. Crucially, the national bereavement care pathway embeds the standards across trusts—across the nation—as a matter of course; that is very important. The situation at present is still patchy. According to Sands, only 46% of trusts with maternity units provide mandatory bereavement care training for maternity unit staff. Of those, 86% provide their staff with just one hour or less of training on bereavement care each year.

While it is of course right that we focus on families, we should also think a little about midwives and obstetricians, who are also very affected by the death of a baby in their care. They often build up an enduring relationship with families, and their future health and ability to function must be considered in thinking about what training they receive.

I want to focus on neonatal units, too. They are very stressful places. Anybody with a child on a neonatal unit is not a happy parent; it is not the place they want to be. Some 41% of neonatal unit patients have no access to a trained mental health worker, and many neonatal units still do not have dedicated bereavement facilities. The Government have funded better bereavement places in nearly 40 hospitals, but this is only the beginning. Prioritising the pathway within the new NHS long-term plan would make a real difference. Planning one year ahead is not good enough. We know that despite our best efforts to reduce neonatal death and stillbirth bereavements will continue to occur, and we need to plan for that. I hope the Minister will have some good news for us on this today. My hon. Friend described the Government as passing the exam with flying colours. I agree and am very grateful for what they have done, but I would say that if the Government want to be an A* pupil, further work is needed in this area so that this becomes the norm.

My second point is that better training is only possible if we have enough midwives. I hosted the launch of the Royal College of Midwives “State of Maternity Services” report recently, which found that finally more midwives are entering training. When I hosted it last year we were very concerned by the ageing of the profession. We are all getting older—we cannot help that—but I am pleased to say that we now have over 2,100 more full-time equivalent midwives in the NHS than we did in 2010, and the vast majority are in their 20s and 30s. It is also important that we focus on retaining these midwives and persuading former midwives back to work. This is progress in the right direction, but the situation remains critical. I really do wake up at night worrying about labouring mothers in my constituency in north Oxfordshire going to the Horton General Hospital to give birth only to be told that the unit has closed because the midwife who staffs it has been sent to cover gaps at the John Radcliffe. This been the case on at least three separate occasions in recent weeks. If anybody knows of anyone who is thinking of becoming a midwife, please encourage them to do so. It is a brilliant profession and it is important that the Department continues to encourage the training and retention of the midwives we need.

Finally, I want to touch on perinatal mental health. On the eve of world mental health day, it seems appropriate to focus on the mental health of mothers and fathers. Pregnancy presents the health service with a brilliant opportunity to engage with people who are becoming parents and to give them life lessons that will improve health choices for them and their children. Their mental health is as important as their physical health. We know that those who have had difficult pregnancies or have lost children will, understandably, struggle with subsequent births. We need to identify families at risk and pour resource in before it is needed. These families may not fit into the usual definitions of post-natal care.

The definition and structure of care in the six-week post-natal period has changed very little in the past 150 years, but during this time there have been dramatic changes in women’s health and our attitude to birth—and indeed in the outcomes of birth. It is critical that contraception is also discussed and is easily available during this time. Waiting months to have a long-acting contraceptive fitted is not helpful to new mothers. It might seem ridiculous to bring up the subject of contraception in a debate on baby loss, but it is important given the maternal mortality statistics. Some of the women who are dying while giving birth should not have been pregnant in the first place. It is critical that we deal with contraception early, where that is appropriate, and that we give people real choices so that they can get the contraception that works for them straight after they have given birth.

We in the all-party parliamentary group will continue to say the unsayable on issues such as baby ashes or the appropriateness or otherwise of inquests. These are dark areas for any society to deal with, but I believe that the APPG has been a force for good. I am really proud to play my part in breaking the silence.

Oral Answers to Questions

Jim Cunningham Excerpts

Tuesday 24th July 2018 Commons Chamber

[Mr Jim Cunningham (Coventry South) (Lab)]

7. What steps he is taking to improve access to NHS adult eating disorder services.

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

The Government are committed to improving eating disorder services for adults. The National Institute for Health and Care Excellence has updated its guidelines, and NHS England recently completed a national review of provision and is considering next steps. We will also be ensuring that people remain properly served as they transfer between children’s and adults’ services.

[Mr Cunningham]

Two thirds of adults wait more than four weeks and one third wait 11 weeks for treatment. What are the Government going to do about it, in the light of the review that the Minister has just mentioned?

[Jackie Doyle-Price]

As I have said, NICE has published its new clinical guideline on the recognition and treatment of eating disorders in people over the age of eight, including adults, and we will make clear to NHS organisations what we expect of them. We are ensuring that we meet the waiting times for eating disorder treatment, and we are delivering against those standards.

NHS Whistleblowers

Jim Cunningham Excerpts

Wednesday 18th July 2018 Westminster Hall

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

I beg to move,

That this House has considered NHS whistleblowers and the Public Interest Disclosure Act 1998.

It is an honour to serve under your chairmanship, Mr Davies. Gosport, Morecambe Bay, Mid Staffordshire and Bristol Royal Infirmary are NHS scandals that all have quite a few things in common: they went on for a long time and often whistleblowers who might have brought the issue to an end and saved lives were punished or ignored. They were certainly intimidated. The anaesthetist who raised the issue of baby cardiac surgery at Bristol Royal Infirmary ended up in Australia.

The term “whistleblower” suggests a pressure cooker—a build-up of pressure to the point where someone cannot resist it any longer and feels the need to come forward. We are trying to decompress some of that impression by having audit of patient safety through such systems as Datix, where staff get used to reporting every little aspect that does not go smoothly, which therefore creates the habit of coming forward. We still have issues. They often relate to the whole system, the trust or perhaps the behaviour of certain medical or clinical staff. There is no easy way to come forward, and the people seeing that behaviour take a long time to be listened to or to step up.

In the investigation into Mid Staffordshire, which was the worst NHS scandal, Sir Robert Francis’s report spoke about developing a “freedom to speak up” culture, to make doing so normal. Sir Robert suggested only minor changes to the Public Interest Disclosure Act 1998 but, as I will come on to later, I think it needs major change because it underwrites everything else.

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate the hon. Lady on securing this timely debate. I had two cases in Coventry, going back 10 or 15 years, in which consultants were suspended for whistleblowing. On the one hand, the Government encourage whistleblowers, but on the other the national health service seems to have a different definition of whistleblowers. One of those cases ended up in court. I do not know the exact figure, but it cost between £3 million and £4 million, and went on for at least 10 years. Meanwhile, back at the ranch, the individual was losing their skills. What does she think about that?

[Dr Whitford]

Obviously, I am unaware of the individual case and the rights and wrongs of it. However, a review of the cost of whistleblowing as it stands shows that having an effective system and effective law would save us money overall.

Sir Robert Francis envisaged “freedom to speak up” guardians in each trust, to whom whistleblowers could go informally to seek advice and support. Such guardians are in all trusts across England. They include a wide range of people, and the appointment system is not altogether clear or transparent. We will have to look at what kinds of staff work best, whether appointments have been appropriate, and whether whistleblower guardians can recognise, if they are clinicians—which many of them are—that there might be a conflict of interest, because the issue might be in their department. The national guardian has been in place since 2016, but her position is non-statutory and sits inside the Care Quality Commission. Her role is described on the website as “leading cultural change” rather than deciding individual cases.

Through all the publicity, there has been quite a change in atmosphere and tone. The whole issue has had a significant airing. In Scotland, we have an alert and advice line run by Public Concern at Work. It is interesting to see the changes from the second half of 2016 to the first half of 2017. The number of concerns that the hospital, or the health board as it is in Scotland, admitted immediately were valid—instead of their having to be proved, or their being put off—went from 0% to 14%. The number of those that were ignored or denied dropped by 30%, and those reported to a manager or a senior manager went up by 30%. That suggests quite a difference in practice. The numbers are quite small, but they suggest a pattern. The data showed that, naturally, the most common group to report is nurses—they are the biggest employed group within the NHS—and the most common reason was still patient safety.

The problem is that that is all still legally underpinned by the Public Interest Disclosure Act, which was passed in 1998. It was a private Member’s Bill very similar to one that had been introduced a few months before. It therefore did not have a Second Reading, and it had only one day in Committee. At the time, it definitely was ahead of what was going on elsewhere, and was a recognition of the importance of whistleblowers, but that was 20 years ago. It really is time for change.

--- Later in debate ---

[Dr Whitford]

I thank the hon. Gentleman, who has set up an all-party group on whistleblowing and on the Public Interest Disclosure Act 1998. I welcome that, but one of my concerns is the issue of bounties.

It is important that we have a new PIDA law and an independent, statutory body that is equal to other bodies and can take on the NHS, NHS Improvement and the CQC. It must not be a department in one of those regulators; it must be separate from the NHS to ensure real independence, and it must investigate and act on concerns. If a local investigation has failed or is failing, there should be a mechanism to report that to an independent body. If we get to the point where there is simply a slanging match within a trust, there will never be a satisfactory resolution, so arbitration needs to come in and look at the cold facts and the original facts of the disclosure. Often, what is looked at is the process, but not whether the whistleblower was actually right to raise an issue in the first place.

It is critical that whistleblowers are protected from detriment from the moment of speaking up. They should be protected during the investigation, and they must not be picked on either subtly, as the hon. Member for Strangford (Jim Shannon) said, or blatantly—they must not lose their jobs. It is important that legal penalties for reprisals against whistleblowers can actually be enforced.

There should be a system of redress for whistleblowers that does not involve litigation. Litigation is expensive for the NHS and the whistleblower, and is utterly confrontational. That means that, at the end of the process, even when a whistleblower has been proven to be right and genuine, there has often been such a breakdown in relationships that it is not possible for them to go back to their previous role.

[Mr Jim Cunningham]

I thank the hon. Lady for giving way once again. The case I outlined actually ended up in the courts, and the hospital was told to take the individual back. Well, it never took him back. There was a long, drawn-out process over a number of years, and it was eventually settled through litigation. That individual—Dr Mattu—was a well-known consultant.

Some of the older Members will remember the case, going back 10 or 15 years. We had debates and got the support of Mr Speaker. The hospital tried to use letters I sent to it, in which I raised issues that had been raised with me, in the courts, and the judge ruled it out of order. The hon. Lady is right that we need an independent body, but where it finds that the hospital is guilty, as it were, and that the whistleblower was doing their job, it should have the power to order reinstatement—that is the nub of the matter—to ensure they are not victimised.

[Dr Whitford]

I agree that there should be protection to ensure that whistleblowers are not victimised, but the problem is that if the relationships have been allowed to break down because the system is so confrontational, often even the whistleblower does not consider it possible to go back. That is a tragedy, because it often means losing someone talented, particularly at a time when we are so short of staff in all four NHS systems in the UK.

The body obviously needs to be statutory so it has enforcement powers, but it should also be responsible for developing standards and training to show hospital trusts, health boards and hospitals, regardless of the system, what good looks like. Setting up, speaking up for and reporting on a body structure for the NHS will be for all four nations, because health is devolved, but PIDA still sits above that. It needs to be the underpinning statutory law that gives the body force.

In Scotland, we are still working on our system. Obviously, the Francis report looked at the system in England. We have whistleblower champions in our health boards, but we are working on setting up the independent national whistleblowers office. The difference between that and the national guardian in England is that it will be statutory and independent of NHS Scotland. It will sit in the office of the Scottish public services ombudsman, so it is utterly outside the NHS and clearly sends a message of independence. It will be able to adjudicate in individual cases. Normally, that will be when all local processes have been exhausted, but provision is being considered to allow an earlier referral when the local system has simply broken down and the concern about patients has been lost in the conflict-driven system.

Standards are being developed for all health boards so there is a consistent approach. The standards that sit above everything else are that whistleblowers will be listened to, that their concerns will be acted on and that they will be supported. The former Secretary of State, who is now away to sunnier climes or travelling the world, used to keep saying in the Chamber that whistleblowers are central to patient safety. I have to say that I slightly disagree.

When someone is forced to blow the whistle, it is because the patient safety systems have failed. In Scotland, we have a national patient safety programme, which is the first in the world that is right across the system. People cannot pick and choose whether they do the huddle at the start of an operating list or whether they do the World Health Organisation checks before operating on somebody. It looks at the frontline to try to reduce errors, but we know that there will still be situations that are not ideal, so someone will need to come forward. That is the thing: whistleblowers are a backstop. The patient safety system, the Datix system or the auditing may need to be improved, but whistleblowers provide a backstop to prevent us from going over the cliff, to prevent more people from dying and to allow timely action.

The problem is that, although doctors have a duty of candour laid on us by the General Medical Council, we also see the landscape littered with people’s careers and jobs, as the hon. Member for Strangford said earlier. For an individual, that is really difficult. They think, “If I speak up and step forward, it may be the end of my career. I may be out of a job. I may be out of this hospital.” For patients’ sake, we need a change, we need to get it right, and we need a new public interest disclosure law. We should start work on that now.

NHS Trusts: Accountability

Jim Cunningham Excerpts

Tuesday 10th July 2018 Commons Chamber

[Sir Mike Penning]

I could not agree more with the hon. Gentleman. We have discussed and debated this before, and this must be like “Groundhog Day” for the Minister. I should have thanked him earlier for bearing with me in what may be a much longer debate than he probably assumed when he saw it on the Order Paper.

It is important that there is proper due process when we employ people who work in the NHS, and in relation to salaries. I am sure that the Minister will now go away and check with the Treasury how this happened. My understanding was that such remuneration—and we are going back a couple of years—would not have been allowed even then. Trust in the NHS is vital. There are other examples, which I will produce, that will show that although the NHS is absolutely world renowned, there are errors in it that infuriate the people who it is supposed to be representing and looking after.

[Mr Jim Cunningham (Coventry South) (Lab)]

This is a timely debate. I agree with my right hon. Friend the Member for Warley (John Spellar): it seems to me that a game of musical chairs is going on. We see chief executives who leave under questionable circumstances get a job outside the NHS and then turn up at another trust somewhere else. There does not seem to be any accountability.

As politicians, we are often accused of being remote, but nobody is more remote than people at some of the trusts I have looked at. Someone trying to get information from them about their budgets and where the expenditure goes has a job on their hands. It is about time that how the Department is run is looked at; it gives directions to the rest of the chief executives in the country, even on appointments.

[Sir Mike Penning]

I agree almost completely; I would just say that sometimes these people do not even leave the NHS—they stay within the structure of the NHS, but just go to a different trust in a different part of the country. Then they just reappear again and again.

I have often wondered about something. A director of nursing should clearly have come up through the nursing ranks; I understand that. Clearly, also, clinicians have to be involved in the clinical side. But why does NHS management have to be completely incestuous in how it works? If someone started as a nurse or doctor, how on earth do they have the necessary qualifications to run a massive multi-million pound organisation? Yet that is how it seems to happen. It took a long time for Mr Ron Glatter to get the figures when he was challenged. When we eventually got them, it was like pulling teeth: was it a package or a salary? “This is personal information.” This is taxpayers’ money. One of the most difficult things is to find out exactly where the money is going.

--- Later in debate ---

[Mr Cunningham]

The right hon. Gentleman is being very gracious in giving way. We had a case involving two consultants. With one in particular, the case actually ended up in the courts. We have never been able to find out the cost of the litigation, but it was anywhere between £2 million and £4 million. On the one hand, the public has got to raise the money if they want to challenge something, but within the NHS itself, where resources are very scarce, a lot of money is wasted on litigation. This consultant was taken to task because he was a whistleblower. On the one hand they encourage whistleblowers, but if they do not like what the whistleblowers have to say they suspend them and eventually try to get rid of them through litigation.

[Sir Mike Penning]

I was coming on to that point, but let me meet it head on now. I speak to nurses and other frontline staff who look after my local patients, including some doctors, and they are petrified of telling their own MP what is going on in case of retribution. Perhaps the Minister will help me to get to the bottom of the number of gagging orders out there at the moment in my trust, whereby things have been settled and people have been gagged. The types of threats in the gagging orders that are put on them are very severe.

There was a consultation panel in my constituency about the future of health, and the people allowed on the panel had been gagged. These are members of the general public who have been told categorically not to talk to me. They are not to tell me what is going on in the NHS in my own local community. They will be thrown off the panel if they do, and it is worse for the staff who have gagging orders against them. This is very serious.

We see the amount of money the NHS uses in litigation, whereas our patients have to raise money themselves. The NHS seems to settle very easily when there are threats against it relating to malpractice or when something has gone wrong at the trivial end of things, but when things are really serious and deaths have taken place, down come the shutters. Nationally, we have seen what happens—it has happened recently in Gosport and in Staffordshire when I was a shadow Minister—unless the staff have 100% confidence that they can go to their MP or their line management and tell them what has been going on. Sometimes it can be quite trivial, but often it is very serious, and there is clearly retribution against them should they do so. That is something we need to sort out.

Health and Social Care (National Data Guardian) Bill

Jim Cunningham Excerpts

3rd reading: House of Commons & Report stage: House of Commons
Friday 6th July 2018 Commons Chamber

[Alex Burghart (Brentwood and Ongar) (Con)]

It is a pleasure to speak in support of this extremely important private Member’s Bill. To pick up where my hon. Friend the Member for North Devon (Peter Heaton-Jones) left off, data—data ownership and storage—is one of the big questions that society and this House will have to grapple with in the decades to come. I have noticed when talking to younger constituents how increasingly aware they are of where their data on social media goes and, most importantly, who the owner of that data is. Does the owner remain the subject of that data, or does ownership transfer to whoever is holding it? These are important conceptual issues that I am sure the House will have to continue to grapple with in the years ahead, and I am pleased that my hon. Friend the Member for Wellingborough (Mr Bone) has contributed to us moving in this direction.

I first had to come to terms with issues around personal data when I went into public policy research about 10 years ago. Two things became immediately clear. First, although the Government were collecting a lot of data on individuals, the way that they felt obliged to keep that data meant that they were extraordinarily bad at joining it together. We had very good information on children, for example, but rather lousy information on families. Building that context around an individual is absolutely vital if we are to build a decent series of research questions and answers that allow us to interrogate the causes of particular problems, or to see what positive influences in somebody’s life might have led them to avoid certain problems.

On a professional level, although the Bill does not deal with children’s data—children’s safeguarding is covered by different legislation—when I worked on child protection I saw powerfully the consequences of poor data sharing and safeguarding services. I read a large number of serious cases reviews that were published in the event of a child being killed or suffering serious harm, and time after time the findings of those serious case reviews were that agencies had failed to share data at key moments. Time and again, recommendations were made that better information sharing procedures should be created. We had a series of organisations which, albeit with the best intentions, were in effect working in silos, and by not working together they were missing opportunities to protect children, and in some cases to save their lives. That reluctance to share data was not laziness or professional neglect; it was often because agencies were scared of the potential legal consequences of sharing private information with other professional bodies.

[Mr Jim Cunningham (Coventry South) (Lab)]

The hon. Gentleman is making a good point. Over the past two or three years we have had this problem of child abuse and so on. One thing that struck me is the fact that agencies do not co-operate with one another or share information in the way they should. As a result, something that could be prevented is not prevented. Does the hon. Gentleman agree?

[Alex Burghart]

I absolutely agree, and I am grateful to the hon. Gentleman for that important intervention. If we create a framework that helps agencies to share information about vulnerable individuals safely, that enables those agencies to become greater than the sum of their parts, and to combine and enhance their professional interrogations, so that they can join the dots and create a true picture of what is happening in someone’s life.

As I saw earlier in my career, however, if done incorrectly such an approach can be taken to dangerous lengths. In about 2008-09, the Government proposed to create a service for children called ContactPoint. The programme was well intentioned, and it intended to bring together all the information on all children in one single place. However, it would have given access to that information to around 350,000 professionals nationwide, and civil rights campaigners immediately became concerned that that would effectively put all information about all children into the public domain, that it would not take long for that information to be out in the public space, and that once there, the process would be irreversible.

Today we are seeing exactly the right civilised and sophisticated approach to data handling. As I understand it, the National Data Guardian will work with professional bodies to ensure that they understand what they can do. She will be in a position to work with the public and ensure that they understand how their data is shared, and how it might be shared in future in order to improve services. Like my hon. Friend the Member for Wellingborough, I believe that the National Data Guardian will ultimately help people to choose whether they want their data involved in this sort of analysis.

I draw the House’s attention to a very significant initiative taking place in New Zealand. Using this sort of sophisticated data handling arrangement, the New Zealand Government have built the Integrated Data Infrastructure, which brings together pretty much all public, and some private, data held on individuals. It combines it by creating unique identifying numbers for each individual, taking out their names so that all records become anonymous, and then matching the data. This is done in a way that prevents track-back to the individual, while allowing large amounts of interconnected and complex data to be analysed by researchers, so that they can better understand the causes of social complex problems and how it is that some individuals with similar characteristics do not suffer from the dangerous long-term outcomes that some of their peers do.

This is groundbreaking stuff. The fact that the New Zealand Government have managed to do it in such a way as to take the public with them to create a world-class research resource gives us all hope that it can be done. When I talked to the people who lead the project in Wellington, I asked them how they got over the public’s concerns. They said that when they first took it to public consultation a lot of the public said that they rather assumed their data was being used for decent purposes already and found it very strange that their private data was not being used anonymously to solve the big health questions and social problems of the day. Yes, they wanted guarantees that their private information would not end up in the public sphere, but they said, “For goodness’ sake, get on with it.” I think there is a very important lesson for us all in that.

I very much hope the Minister will take a moment or two in her remarks to reflect on how the National Data Guardian may be able to help us in our jobs as MPs. As Members, we often have to handle sensitive information, and we are often responsible for the exchange of sensitive information. I therefore believe the National Data Guardian will perform a service to this House in due course. I am absolutely delighted to support the Bill.

Transforming Care Programme

Jim Cunningham Excerpts

Thursday 5th July 2018 Commons Chamber

[Norman Lamb]

I completely agree. That sense of complete injustice and the denial of human rights still exists. Nothing much has changed, which is why the debate is so important, and I share the hon. Lady’s view that we should not tolerate this scandal. What makes the situation even worse is that this is not a demand for vast amounts of extra public money; it is about how public money is spent. Our demand is that money is spent in a way that respects people’s human rights and gives them the chance of a good, happy life in the community, with the support of care workers, friends and family, rather than being trapped in institutions. It is shocking that the situation for very many people has remained exactly the same as it was all those years ago.

[Mr Jim Cunningham (Coventry South) (Lab)]

As my hon. Friend the Member for Liverpool, Wavertree (Luciana Berger) said, it is shocking that it has taken seven years for us to get even this far. I have noticed that although on the one hand the national health service encourages whistleblowers, on the other hand it sometimes litigates to stop whistleblowers, so there is a contradiction. Does the right hon. Gentleman agree that if people had taken notice of whistleblowers, some of these things might never have happened?

[Norman Lamb]

I do agree, and that is another big subject that I will be pursuing further in the light of the Gosport inquiry, which I established when I was a Minister. In that case, brave nurses tried to blow the whistle in 1991, but they were shut down by management and unable to pursue their concerns. More than 456 people lost their lives as a result of the inappropriate prescribing of opioids, and that was because whistleblowers—brave staff members—were not listened to. In every part of our health service, we must ensure that people feel able to speak up and that they have the legal rights to do so.

The outcome of our deliberations in the Department was to establish the transforming care programme, which was published in December 2012. Interestingly, it was pursued as a concordat and an agreed programme of action. It was supported by an amazing array of organisations, all of whose logos appeared in the document, including—critically—NHS England. Every organisation that signed up to the programme committed to

“working together, with individuals and their families—

note the phrase “with individuals and their families”—

and with the groups that represent them, to deliver real change.”

That was in December 2012.

These organisations that had committed “to deliver real change” also stated:

“Our shared objective is to see the health and care system get to grips with past failings by listening to this very vulnerable group of people and their families, meeting their needs and working together to commission the range of support which will enable them to lead fulfilling and safe lives in their communities.”

To put it bluntly, there has been a shameful failure on that commitment to change, which simply has not happened for the majority of people involved.

At that time we were operating in a fog. No data had been collected historically on the numbers of people in beds in institutions, so we had to rely on periodic censuses to find out whether anything was changing. When we conducted a census about 18 months after the start of the programme, it was shocking to discover that there had effectively been no change—it was business as usual. The really disturbing thing was that many private sector organisations were making substantial investments in new facilities and delivering the wrong model of care. Why did those organisations have the confidence to make major million-pound investments in inappropriate care? It seems to me that to justify such investment, they must have had reassurance from somewhere in the system that things would carry on as they were. It was shocking to discover the extent to which it was simply business as usual.

Phenylketonuria: Treatment and Support

Jim Cunningham Excerpts

Tuesday 26th June 2018 Westminster Hall

[Liz Twist]

I agree; it is important to look at the question in the round.

Many parents find that they need to give up work or reduce their hours to maintain their child’s diet and keep them healthy. At the end of last year, the NSPKU produced a booklet and video, “Patient Voices: Listening to the experience of people living with PKU”, which clearly and movingly sets out the practical and psychological impact of the condition on individuals.

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate my hon. Friend on getting the time for a debate on the issue; not enough is known about it. It strikes me, as I listen to her, that a child with PKU is a prisoner of their body, in a way, and so are their parents, because of the regimented way they must deal with the child’s needs. Does she agree?

[Liz Twist]

I most certainly agree that it places an incredible strain on parents, who must live with that all the time. I recommend the “Patient Voices” booklet and video to anyone who has not already seen them.

In this debate, I will highlight very specific concerns about treatment and support for PKU. The first is the issue of access to a drug treatment, sapropterin, which is thankfully more commonly known as Kuvan. Although it is available in 25 countries across Europe, and was licensed for marketing over 10 years ago in the European Union, Kuvan is not available to people with PKU in the UK.

ME: Treatment and Research

Jim Cunningham Excerpts

Thursday 21st June 2018 Westminster Hall

[Carol Monaghan (Glasgow North West) (SNP)]

I beg to move,

That this House has considered myalgic encephalomyelitis treatment and research.

It is a pleasure to serve under your chairmanship, Mr Rosindell. I thank the Backbench Business Committee for giving Members the opportunity to hold this debate.

It is estimated that around a quarter of a million people in the UK suffer from myalgic encephalomyelitis—ME. It costs the UK around £3.3 billion per annum. Although the exact cause of the disease is unknown, numerous patients report that their ME developed following a viral infection. ME is characterised by flu-like symptoms that can vary in severity from headaches and muscle aches to debilitating pain, extreme sensitivity to light and sound, and memory and concentration problems. For some, even touch is intolerable and they require tube feeding. Despite the number of people affected and the devastating effect of the disease on sufferers and their families, it is very much a hidden illness, which is characterised by some as yuppie flu and misunderstood by doctors, the public and politicians alike.

[Mr Jim Cunningham (Coventry South) (Lab)]

The hon. Lady is quite right that doctors do not research this enough and do not have adequate training to suss it out, for want of a better term. More importantly, less than 1% of children are badly affected. Does she agree that, very often, employers do not understand the illness?

[Carol Monaghan]

I agree entirely with the hon. Gentleman. It is a tragic situation when children are not able to attend school and social services become involved because they consider there to be a problem with those children’s care.