Southern Health NHS Foundation Trust

Baroness Blackwood of North Oxford Excerpts

Wednesday 8th June 2016 Westminster Hall

[Mr Andrew Smith (Oxford East) (Lab)]

I congratulate the hon. Member for Fareham (Suella Fernandes) on securing this vital debate and on her work with the all-party group on Hampshire and Isle of Wight. Everything that has come out or been dragged out since the tragically avoidable death of Connor Sparrowhawk, “Laughing Boy”, has highlighted the severe failings of Southern Health and the wider questions they raise about the treatment of learning-disabled people in the NHS. The facts that have emerged are awful beyond belief and are a shocking indictment of the leadership of the Southern Health trust and the appalling neglect of the most basic care needs and human rights of learning-disabled people.

As the hon. Lady said, we all owe enormous thanks to the courage and determination of Connor’s mother, Sara Ryan, and her family, as well as the other families of those who have died and suffered. Without them, there was a real risk that the hideous truth of neglect at Southern Health might not have been fully exposed. Connor’s family and other families have been let down so badly and shamefully by Southern Health, which did not share information that the family had a right to. The family were treated as the enemy at Connor’s inquest and did not even receive an apology until Southern Health was directly pressed to give one. Even today, as Sara went for mediation with Southern Health on her human rights case, it had not released background papers, as it was supposed to have done.

The Mazars report happened only because of the determination and persistence of Connor’s family. As we have heard, the failings it exposed were shocking beyond belief and have been confirmed by the CQC reports. It is important to remember some of the hideous statistics that the hon. Lady quoted; we should remember that each one is a human life. Of 10,306 deaths, 722 were categorised as unexpected, of which only 272, or 37%, were investigated as a critical incident. A lower proportion—30%—of deaths in adult mental services were investigated. Appallingly, less than 1% of deaths in learning disability services were investigated. Liaison with families was appalling, with 64% of investigations not involving the family.

I will quote what the My Life, My Choice charity from my constituency said in a letter yesterday to the new chair of Southern Health. It is a charity of learning-disabled people, for learning-disabled people. This is how things look from the perspective of people with learning disabilities. It said:

“You suggested that the Mazars report was not very important, or not true. We think it is a very important report. Our members are very worried about people with learning disabilities dying, and their deaths not being properly looked into. We know from Connor’s case that the truth is not always told, so investigations need to happen. Our members are scared because people with learning disabilities do not get the same standard of healthcare as everybody else. The Mazars report told us that if we die, our deaths will not be taken seriously.”

Someone has to take responsibility for what happened. To the families and to the public, it is unbelievable that the chief executive and medical director of Southern Health are still in post. We all understand that due process has to be followed, but nearly three years on from Connor’s death, we must ask: how long will it take before those responsible are properly held to account? That is important not just to atone for a wrong; it is crucial because of the signal it sends to others responsible for the care of learning-disabled and other vulnerable patients. It is crucial in re-establishing public confidence that those leading the provision of care are responsible and are held responsible for their actions.

I look forward to the Minister’s response to this debate. With Sara Ryan I met the Secretary of State, and I have talked and corresponded with the Minister. I know that they too are both concerned to see matters put right at the trust, and to apply the lessons more generally in the healthcare system.

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

The right hon. Gentleman is making a powerful speech. His point that no one, no matter how vulnerable, should feel fear when they go into our health services is something that should give us all pause for thought in this Chamber. But it is not only about accountability in this case; it is also about making sure that those who are watching us as we go through the process know that an independent, verifiable process will be put in place so that nothing like this can ever happen again, not only at Southern Health but throughout our mental health services.

[Mr Smith]

I very much agree with the hon. Lady, my neighbour and friend, on that important point. I look forward to the Minister’s response as to what the independent oversight will be to ensure security in future.

It will be helpful if the Minister can update us on progress in relation both to the Southern Health trust and to wider concerns in the NHS, and if he can say when he expects the CQC to publish its opinion on the trust’s response to its warning notice, with the possibility of enforcement action being taken. Will he also say when he expects the Government to be in a position to make a definitive statement on the action they will take on the conclusion of the Care Quality Commission’s wider investigation into deaths throughout the NHS? It is an enormously important issue to get right.

We all have to learn from these appalling events. We have to apply the lessons and put in place procedures and the culture so that learning-disabled people and others receive the care, treatment and respect that they deserve, and so that they can be confident that they will get that. An NHS that truly fulfils its duty of care, in which Southern Health so lamentably failed, is the only thing that can come close to a fitting memorial for Connor Sparrowhawk.

--- Later in debate ---

[The Minister for Community and Social Care (Alistair Burt)]

It is a pleasure to serve under your chairmanship, Mr Hanson. I thank my hon. Friend the Member for Fareham (Suella Fernandes) for securing this important debate on the governance of the Southern Health NHS Foundation Trust. I also thank all Members who have spoken, by way of either significant speeches or interventions. The number of colleagues from the area who are involved—from across the House—gives an indication of how seriously we all take this issue. I urge the trust’s representatives to read the report of this debate extremely carefully, so that they absorb everything said by my hon. Friend and all those who have spoken in support.

May I begin by once again apologising to all the patients and families who have been affected by the failure of the trust to provide safe care for its patients? I met Sara Ryan yesterday when I visited the National Forum of People with Learning Disabilities. I had an opportunity to have a conversation with her, and I met more parents and families today before the start of this sitting. Nothing that an official can write on a piece of paper can adequately describe what it is like to meet and talk to families who have been involved in the sort of things that we are talking about here. This is not the first time I have had such meetings: I have had them since coming into post a year ago. It is impossible to convey simply and straightforwardly all that people feel.

What worries me most—I have said this to families in private and I say it again here—is that I hear the same things again and again. I hear about the frustration and concern about the time taken to get anything done when it has been agreed that something should be done, about the time taken to get any answers about what might be done in the first place, and about the defensiveness in the attitude of the institution being dealt with—my hon. Friend the Member for Eastleigh (Mims Davies) described it as a bunker mentality. I do not know whether it is a reflection of a professional attitude—because clinicians and others see things every day—but it is genuinely upsetting to hear people who have lost their loved ones talk about the lack of simple sympathy from those who deal with them. I have heard from enough people in enough different parts of the country to know that what I am hearing is not a one-off.

I also get distressed when I hear through the system that people can be difficult. People have every reason to be difficult, but that is not an acceptable way of describing people who are concerned and upset.

Because this point is made in place after place, as the hon. Member for Liverpool, Wavertree (Luciana Berger) knows well, by many different types of people, I am not sure that the system’s response deals adequately with some of the individual issues that have arisen over the past year—I will come to that later. I say to the parents and families involved that their individual contact, when they get the opportunity, with Members of Parliament and Ministers is not time wasted. It is easy to say that people will feel that only when they see something done, but the contact has a profound impact on officials and Ministers alike.

The first duty of any care provider is to keep its patients safe. The reports of inaction, bordering on complacency, set out in the recent Care Quality Commission report were truly shocking. I responded to an urgent question on the safety of care and services at the trust on 3 May, and I welcome the opportunity provided by today’s debate to update the House on the actions taken in response, several of which pick up on issues raised by the hon. Member for Liverpool, Wavertree and others.

As hon. Members are aware, NHS England commissioned a review by Mazars in November 2014 of deaths of people with a learning disability or mental health problem in contact with the trust between April 2011 and March 2015, in response to serious concerns surrounding the avoidable death of Connor Sparrowhawk. On publication of the report in December 2015, my right hon. Friend the Secretary of State for Health asked the Care Quality Commission to carry out a focused inspection of the trust to review its governance arrangements and its approach to investigating and learning from incidents, as well as its progress in responding to Monitor’s action plan.

On 12 January, Monitor announced further regulatory action in response to the Mazars report, including the appointment of an improvement director for the trust. The CQC inspection took place in January 2016 and led to a warning notice and an announcement of further regulatory action by NHS Improvement, which were both published on 6 April 2016. On 5 May, following the resignation of the trust’s chair, Mike Petter, NHS Improvement required the trust to appoint Tim Smart as the new interim chair. Those actions were in response to the persistent failure of the trust’s senior management to address the environmental and governance risks identified by CQC as far back as October 2014.

The hon. Member for Liverpool, Wavertree and others asked about what has been happening. The issue is split into looking at what has happened and—to use that terribly clichéd phrase—what lessons can be learned, and what is happening now and what confidence people can have in the future. That is vitally important.

I have sought assurances from NHS Improvement and CQC that the regulators are now able to oversee a rapid programme of remedial action by the trust, and I understand that the following measures are now in place. First, at monthly progress review meetings, NHS Improvement challenges the trust’s death and incident reporting action plan and its progress. Secondly, at the request of NHS Improvement, the death and incident reporting action plan is currently subject to external scrutiny. Thirdly, Alan Yates, the improvement director, is acting as a direct link from the trust to NHS Improvement, providing support and constructive challenge to the trust’s board in its oversight of the implementation of the action plan and providing assurance to NHS Improvement and other stakeholders about the trust’s approach.

On the work being done to bring the governance question to a swift conclusion, and in answer to the hon. Lady’s question about pace, the interim chair has already overseen improvements to clinical governance and the trust’s response to the CQC warning notice and NHSI licensing conditions. In parallel, he has commissioned an external review of the capability of the board, which extends to executive and non-executive directors and will inform a decision on leadership by 6 July. That will give the chair, whom I met a couple of days ago, the opportunity to review current capabilities with a view to the future. It is important that he has done that.

Tim Smart has also been in discussion with clinical commissioning groups and other trusts across the local health economy about the provision of services in accordance with the NHS five year forward view, and what that might mean for Southern Health. The transfer of the learning disability service in Oxford to Oxford Health will have been completed by the middle of October.

I spoke to Tim yesterday, and I am absolutely clear that he is right to insist on the highest standards of governance, with leadership concentrating on the real business of the trust—patients and their care. We have an imminent deadline, processes are in place and I am confident that a better Southern Health will emerge, but my confidence counts for very little. It is important that I am able to say that to colleagues with confidence, but the real confidence Southern Health has to gain is that of its patients and families and those who are involved. Having met some of them today, I know that that is a difficult hurdle to overcome, but it is the most important one. A description of processes and what people such as me are doing is not sufficient.

It is necessary that I have said what I have said to colleagues, and that I put on the record that I am confident that NHS Improvement’s review process and its ability to make management and executive changes—which will be carried out by Tim Smart, a newly appointed, experienced chair—is a good response to what has happened. The right person is in place with the power and ability to make the necessary decisions, but any confidence in them will come from the quality of the actions taken as a consequence of the powers invested in the chair and NHS Improvement. Unless actions that have the confidence of people are seen to be taken, something will be lacking. It is important that the chair’s judgment is relied on at this stage, and that I am able to reassure colleagues that the way in which NHS Improvement is working with the chair, and the powers that it and CQC have, are appropriate at the present time, but we must see what happens next.

[Nicola Blackwood]

The Minister opened by expressing his frustration that, since taking his post, he has been hearing about similar failings again and again. Of course, it is not just us in this place who hear about those failings, but the public and patients too. Every time they do, they lose confidence in the ability of the health service and the Government to address those failings. What in the steps that the Minister and Southern Health are proposing will break that mould? What will be different about the response this time? How will our response to this crisis restore the confidence of our most vulnerable constituents?

[Alistair Burt]

I will address that a little later, if I may, but I will come to it.

I should also answer the right hon. Member for Oxford East (Mr Smith) on the chain of accountability for NHS Improvement, and on who makes the decisions there. The decisions are made by Jim Mackey, who leads NHS Improvement. He is a direct appointment of the Secretary of State, so the Secretary of State invests his confidence in Mr Mackey, who makes the decisions on the work of NHS Improvement.

I will now turn to some of the issues raised by my hon. Friend the Member for Fareham and others. First, on the position of Katrina Percy, I need to be clear: Ministers have no authority to intervene in such matters, and nor would it be right for them to do so. I have been assured by Jim Mackey, the chief executive of NHS Improvement, that agreed processes are in place to review the performance of the senior leadership team and to make any changes that are in the best interests of patients. A Minister has to leave that there, and is not able to express any further view. That there is confidence in decisions taken is clearly of huge importance to Members in the Chamber, as they have expressed, and to others. A process is in place to decide that, and it will be decided by the chair.

I share my hon. Friend’s concern that inspectors have pointed to repeated failure by the trust to close out necessary improvement actions until the beginning of the year. NHS Improvement has asked the improvement director to ensure that the trust does not treat actions as complete until sufficient robust evidence supports that claim. The repeated failure to complete actions is one of the things that I will come on to in answer to my hon. Friend’s questions. When people are told what to do by a serious regulator, why do they not just do it? Why do they not do it in Southern Health, but do it in other places? What is the point of accountability and what is the process whereby in other parts of public service something is demanded by a regulator—say, in the acute part of the NHS—and something therefore happens, but something does not happen if dealing with those with mental health or learning disability issues?

Brain Tumours

Baroness Blackwood of North Oxford Excerpts

Monday 18th April 2016 Westminster Hall

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

I am humbled to speak after hearing so many moving personal stories. I am here because of Skye. Skye was five when he tragically died in August 2014, not from the medulloblastoma that he was diagnosed with but from the severe side effects of his treatment—the Milan protocol. We now know that a number of other children also developed similar side effects, and the Milan protocol has now been withdrawn. Skye’s mother, Sally, is here in the Gallery today and since his death his family have shown extraordinary courage, raising awareness of, and funding for, childhood brain tumours and setting up the charity Blue Skye Thinking to support research so that all children diagnosed with brain tumours have a better chance of survival. However, Skye’s story illustrates that, although much is working in childhood cancer treatment, some key areas are in need of urgent improvement.

[Mr Andrew Smith (Oxford East) (Lab)]

As the hon. Lady knows, I lost my dear wife, Val, to secondary tumours and it is a year to the day since she started to have palliative care. I very much share what the hon. Lady said about Skye’s case. Does she agree that, more generally, there is a cruel paradox? Progress is being made in treating other cancers but, because of the blood-brain barrier, that increases the number of people who survive to get a brain tumour. That is a further compelling argument for more research.

[Nicola Blackwood]

The right hon. Gentleman, and friend, has made an important point and I hope the Minister will respond to it. However, we should note at this stage that the overall story of childhood cancer over the last 30 years is positive. Eight in 10 children with cancer survive five years or more, compared with just three in 10 during the 1960s. We should congratulate the Government on that because it is clear that the work and funding we put into fighting cancer is money well spent. As we have heard, unlike most cancers, brain tumours are on the rise and research is underfunded, and because the money spent on cancer is effective, we must put that right.

I want to focus on childhood cancers, for obvious reasons. Despite causing more than a third of childhood cancer deaths, brain tumours receive only 6% of childhood cancer funding. Childhood cancers account for less than 1% of cancer diagnoses in the UK and of that 700 children are diagnosed with a brain tumour every year. It is the most common form of cancer affecting children and the most lethal, killing 160 children every year.

We must consider childhood cancer funding in its own right because children’s cancers are biologically very different from adult cancers and to treat them effectively requires specifically tailored research and treatment. The effect of the funding shortage, ethical challenges and small cohorts mean that 50% of childhood cancers are part of a clinical trial and the remainder are treated using standard treatment guidelines such as the Milan protocol. There are risks with that approach.

As we have heard, cancer treatment is a brutal regime and can cause long-term disability. That is particularly true of childhood brain tumour survivors, 60% of whom are left with life-altering disability. In a few cases like Skye’s, these effects can be fatal.

[Kevin Foster]

My hon. Friend is making some powerful points, as other speakers have. Investment in this area is vital. The costs of caring for those lifelong disabilities as well as preventing deaths are why the Government should invest in this area—invest to save money in the long run.

[Nicola Blackwood]

My hon. Friend makes a good point. This is not a subsidy; it is an investment that will reap a return.

Currently, there is no formal infrastructure to collect and share data about standard treatment guidelines. Consultants working incredibly hard to save the lives of young patients struggle with their inability quickly to access information about the potential adverse effects of very tough treatment regimes. In all my correspondence about this with NHS England and others, the response is, “We’re trying, but it’s very difficult.” That is not good enough because all life-saving cancer innovations are difficult and, given the stakes, I simply cannot accept that the problem is insoluble. The architecture for collecting the data is in place, but the lack of formal data collection requirements and a single responsible body can have devastating consequences.

Currently, the National Cancer Registration Service and Public Health England are developing a pilot to improve data gathering and I welcome that, but it seems that it will be retrospective. It may yield research benefits, but it falls short of the real-time data necessary to guide clinicians. When Skye’s consultant noted that he was deteriorating fast, she could not easily find out whether any other children on the Milan protocol had experienced the same side effects and she was reduced to phoning colleagues ad hoc to ask their opinion one by one as Skye got worse. In the end, it was too late.

In so many ways, we are making tremendous strides in the UK in tackling cancer, including childhood cancer, but the absence of monitoring the adverse effects of standard treatment for childhood cancer can lead to lifelong disability and death. In an ideal world, all childhood cancers would be the subject of a full clinical trial, but we must recognise the challenges associated with research into childhood cancers where cohorts of rarer cancers can be incredibly small and ethical issues are more complex, making it difficult to recruit participants. This means that even with increased funding, which is clearly essential, some childhood cancers will have to be treated through standard treatment protocols.

I hope the Minister—I believe he is a man of action—will listen to the arguments that all of us here have made today about funding concerns and take action to rectify data gathering and standard treatment protocols. If those adverse effects are properly collected, recorded and shared, we may be able to avoid more cases like Skye’s and to increase survival rates of childhood cancers even more.

Childhood Cancers

Baroness Blackwood of North Oxford Excerpts

Wednesday 25th February 2015 Commons Chamber

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

Skye was born on 5 November 2008. He was a happy, healthy young boy with a wonderful sense of humour who loved his younger brother, Jesse. In July 2013, he became unwell with nausea and vomiting and after many visits to the GP and the failure of medication to help, he was referred to the John Radcliffe in Oxford where he had a CT scan and was diagnosed with a brain tumour. That was 27 August 2013.

Skye was operated on less than a week later and tissue analysis identified the tumour as a grade IV metastatic medulloblastoma, the most commonly occurring paediatric brain tumour. It is an aggressive form of primitive neuroectodermal tumour, which originates in the cerebellum, the part of the brain which controls movement and co-ordination. Although Skye’s tumour had been caught early, it had already metastasised throughout the brain and spinal cord. Surgery was quickly followed by what is known as the Milan protocol: four cycles of chemotherapy over 11 weeks, and a further five weeks of hyper-fractionated radiotherapy. After a four-week period of recovery, Skye had high-dose chemotherapy that confined him to hospital for seven and a half weeks.

He then had four weeks rest at home, and was due to head back to hospital on 14 May 2014 for another round of high-dose thiotepa, but a urinary tract infection delayed the treatment until 28 May, which in hindsight was fortunate. Instead of getting stronger, it became apparent that Skye was getting weaker and an emergency MRI scan on 20 May revealed widespread white matter lesions within his brain and spinal cord, which caused a flurry of correspondence between consultants across the UK and abroad. He was quickly started on high-dose steroids to combat the inflammation.

It was initially diagnosed as radionecrosis, which had been brought on by the combination of therapies that he had had to endure. It was later confirmed as radio-chemo neurotoxicity. His parents were told that that was highly unusual and very rare. We now know that a number of other children have also developed severe neurological side effects and the Milan protocol was quickly withdrawn from use in the UK. He was in a state of paraplegia, with double incontinence, and very poor use of his upper limbs and hands. Skye sadly died at home on 29 August 2014.

I did not meet Skye and I only met his parents some time after his death. They are in the Gallery tonight and have demonstrated to me the most extraordinary bravery in the face of losing their child in this most distressing of ways. They have set up Blue Skye Thinking, a charity that supports research so that all children diagnosed with brain tumours will have a better chance of survival and a better quality of life post-treatment. They continue to support many other parents whose children are suffering from cancer today.

I have taken some time to explain Skye’s story in detail this evening because it illustrates only too well some of the things that are working in childhood cancer treatment at the moment and some of the things that need improvement. The overall story of childhood cancer treatment over the past 30 years is a positive one. Eight in 10 children with cancer survive five years or more, compared with just three in 10 in the 1960s. Short-term survival is also high: fewer than 10% of children die within a year of diagnosis and only 2% die within 30 days.

I congratulate the Government on that. Ministers have demonstrated a clear commitment to fighting cancer and the work and money that has been put into the system to improve cancer survival rates are bearing fruit and proving that the money is being well spent. However, we should not allow these headline statistics, encouraging though they are, to blind us to the fact that, rare though childhood cancer is, it remains the leading cause of death in children and teenagers in the United Kingdom. Childhood cancers account for just 1% of cancer diagnoses in the UK. For research purposes that is a small cohort, but 700 children and young people are diagnosed with a brain tumour every year.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this matter to the House today, and for allowing me to intervene. Cancer Research UK has given me some figures today showing that 60 people are diagnosed with cancer each day in Northern Ireland. When Josh Martin, a young boy at secondary school, went into hospital to have his appendix removed, he was found to have progressive cancer. His family started the Pray for Josh campaign, which is being supported by his family and by the Churches. It has not only given great comfort to the family but helped to highlight the scourge of cancer and the fact that funding for drugs and help for families are very important. One of the organisations that can help is Macmillan Cancer Support. Does the hon. Lady agree that the support of such organisations can be important for families at times like these?

[Nicola Blackwood]

The hon. Gentleman is absolutely right to say that this is about not just Government funding but the way in which funds are given, and charities in particular play an important part. The fundraising that they do through individuals is vital.

As I was saying, 700 children and young people are diagnosed with a brain tumour every year, and that makes it the most common form of cancer affecting children and young people. It is also the most lethal. Brain tumours kill more children and young people than any other cancer—around 160 children a year—but despite being responsible for more than a third of childhood cancer deaths, brain tumours receive only 6% of childhood cancer funding. That funding matters because children’s cancers are biologically very different from adult cancers and treating them effectively requires specifically tailored research and targeted treatment regimes. At the moment, only about 50% of childhood cancers are part of a clinical trial; the remainder are treated using standard treatment guidelines. As Sally and Andrew Hall discovered, that can have serious consequences.

Cancer treatment is harsh at the best of times, and recent studies show that while many survivors of children’s cancers go on to live healthy lives, others face long-term disability and reduced immunity. Radiotherapy, the gold standard in terms of its efficacy in treating cancer, can also have damaging long-term consequences for the developing child. This is particularly true of childhood brain tumour survivors, 60% of whom are left with a life-altering disability. In a few cases, the side effects can be so severe as to be fatal. That is what happened in Skye’s case.

The Milan protocol, under which Skye was treated, was a standard treatment guideline, because as with about 50% of other childhood cancers there is no clinical trial available. It has become clear that there is currently no formal infrastructure in place to collect, record and share data, particularly on adverse effects of treatment, about standard treatment guidelines. I understand that before 2008 the responsibility for collecting and sharing data for clinical trials and for standard treatments fell under the remit of the Children’s Cancer and Leukaemia Group. Subsequently, clinical trials monitoring was tightened, and the CCLG’s “Guide to Clinical Trials” states:

“Clinical trials are very closely monitored by a number of different individuals and organisations. This will include the Chief Investigator…the working group…and relevant staff within the clinical trials unit. An Independent Data Monitoring Committee may also be established to oversee the conduct of the trial. At a national level, there will be an ethics committee and the national regulatory body. If there are any concerns about the conduct of the trial or the results, a trial may be stopped early.”

By contrast, in a letter responding to my concerns about the issue, the National Cancer Intelligence Network, told me that

“all of us in the field accept that (adverse effects in Standard Treatments) is something that should, under ideal circumstances, be a part of the data that we routinely collect. Such data are, however very much more difficult to collect than might be imagined and adverse effects were never part of what the CCRG (Childhood Cancer Research Group) or the CCLG themselves collected outside of a clinical trial. There are no nationally agreed datasets relating to adverse effects and few clinicians systematically collect and collate data of this sort...but it is clearly something that we in the NCIN should be considering.”

I am grateful that the NCIN has recognised that these data should be collected and collated, but I do not think that considering doing it is a sufficiently robust or urgent response to the problem, given the gravity of the consequences if a standard treatment goes wrong.

Clearly, in an ideal world all childhood cancers would be the subject of a full clinical trial and new targeted therapies being developed to reduce the long-term risks, but all of us know the challenges associated with research into childhood cancers, where cohorts of rarer cancers can be incredibly small and the ethical issues are more complex, making recruiting participants more difficult. Obviously, I am going to urge the Government to do whatever they can to fund and encourage more research into childhood cancers. I am going to ask the Minister to consider whether having only 6% of childhood cancer funding going to the biggest killer in childhood cancer represents getting the balance right, and I am going to ask her to maintain investment in the Health Research Authority programme to streamline the regulation and governance processes for clinical research in the NHS.

[Mr Brian Binley (Northampton South) (Con)]

May I say that, as a cancer sufferer, I welcome my hon. Friend’s courage in bringing this debate? May I pay tribute and offer my sorrow to these parents? May I also say that our Front-Bench team need to take on board the problems? I have seen parents, week in, week out in Northampton general hospital, and I know the case she is making is a real and heartfelt one. I hope that we will get good words from the Minister.

--- Later in debate ---

[Nicola Blackwood]

I thank my hon. Friend for his intervention and his support. I wish to emphasise the need for investment in the HRA streamlining programme, because I believe it will have a significant impact on reducing the resource and time required to set up trials across multiple sites in the UK, and that can only be good for research into childhood cancers, as it will be for research into all cancers.

I particularly want to focus today on the complete absence of data collection, recording and sharing on standard treatments of childhood cancers in the UK. I am very disappointed that having written to the life sciences Minister about this issue in early December I have yet to receive a substantive response. This issue could not be more serious for the treatment and long-term outcomes of children with cancers, especially brain tumours. Consultants around the country who work with incredible dedication to save the lives of their young patients struggle with their inability to quickly access information about the potential adverse effects of very tough treatment regimes, and it is a problem that we must try to fix. The architecture for collecting the information—the NCIN and the CCRG—is in place, but the lack of a formal data collection requirement and of a single responsible body can have devastating consequences for families.

When Skye’s consultant noticed there was an unexpected problem with Skye—the severe white matter damage shown on the MRI scan—she immediately tried to see whether any other clinicians had experienced similar issues. This was important in order to ascertain what other symptoms to look out for, what other treatments could be tried and what other outcomes they had had. Despite the fact that we now know that other children had been suffering in a similar way and that different treatments had been tried, she could not easily obtain this information; it was a matter of phoning around individual colleagues in an ad-hoc way to ask them one by one, and all this took place while Skye deteriorated. Time in such situations is of the essence so this is an unacceptable situation and it cannot be allowed to continue. Had there been a system in place to monitor adverse effects, things might have been different.

In so many ways, we are making tremendous strides in tackling cancer in the UK, including childhood cancer, but the complete absence of monitoring for adverse effects of standard treatments of childhood cancers can lead to life-long disability and death. I hope the Minister will take this away and take urgent action to rectify the situation. I also hope she will arrange for myself and Sally and Andrew Hall to meet the appropriate representatives from her Department to address this issue, once and for all. If details of those adverse effects are properly collected, recorded and shared, we might be able to avoid those consequences in more cases, increase childhood cancer survival rates and improve the quality of life for survivors even more.

Oral Answers to Questions

Baroness Blackwood of North Oxford Excerpts

Tuesday 13th January 2015 Commons Chamber

[Dr Poulter]

The hon. Lady makes very important points. I have certainly seen in my clinical practice that some women present when there are domestic violence issues or other issues in the home, and such issues can be heightened and exacerbated during pregnancy. A lot of work is now going on to improve the awareness of all NHS staff of domestic violence and, more broadly across training, of mental health issues.

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

For many people with mental health problems, the first emergency service with which they come into contact at a point of crisis is the police. What steps are the Government taking to ensure that such a crisis is treated as a health crisis, not a criminal incident, and will the Minister undertake to do whatever he can to ensure that no children end up in a police cell as a place of safety?

[Dr Poulter]

My hon. Friend makes an important point. It is absolutely right that we do not want people with mental health problems to be looked after in police cells. A lot of work has been going on. The Government have set up the crisis care concordat to look at exactly that issue, and as a result the number of people with mental illness going to police cells is now falling rapidly.

NHS Services (Access)

Baroness Blackwood of North Oxford Excerpts

Wednesday 15th October 2014 Commons Chamber

[Andy Burnham]

That is inaccurate, because it was not a private-only shortlist—there was an NHS bidder in the frame at the time. The hon. Gentleman needs to keep his facts straight. As I said earlier, I introduced the NHS preferred provider principle, and that is my policy. [Interruption.] If he wants to dispute that, then the facts will speak for themselves. The shortlist had public and private on it.

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

rose—

[Andy Burnham]

I will give way one last time and then finish.

[Nicola Blackwood]

The shadow Secretary of State is being very generous, and I hope that he will respond to me in a non-partisan way. I speak as the daughter of two NHS workers and as somebody who has recently had a very close family member survive an emergency operation for a life-threatening illness. Will he clarify Labour’s position on what it would do in government about a reorganisation, because the difference between a restructuring and a reorganisation is not clear to me? The British Medical Association and GP leaders have been very concerned about exactly what the policy is and what it would mean, so will he make that clear? He has been criticising certain policies, and I would like to understand what his policy would be.

[Andy Burnham]

I am glad that the hon. Lady asked that—it is a very fair question. I imagine that a reorganisation is the last thing that people in the NHS would want right now. My definition of a structural reorganisation is where we stand down a whole set of organisations and then create a whole set of new ones. I have been very clear that I will not do what the right hon. Member for South Cambridgeshire (Mr Lansley) did. I will work with the organisations that I inherit. I will work with CCGs, and with health and wellbeing boards, in particular. Health and wellbeing boards were one of the few good things that came out of the Act, because they are a partnership between local government and the NHS, and that is something I can work with. She asked a fair question and I hope I have given her a fair answer. A structural reorganisation where we make everybody redundant again and recreate organisations will not help anybody. In fact, if the Government wanted GP-led commissioning, they should simply have put doctors in charge of the old primary care trusts. If they had done that, they would have saved a lot of money and a lot of heartache in the process.

I am going to finish on NHS funding. The letter I mentioned at the beginning called for a long-term spending plan for the NHS. The NHS Confederation has put that at £2 billion a year. At the Conservative party conference, the Prime Minister committed to maintaining the ring fence for health in the next Parliament, but experts are clear that that will not be enough to prevent the NHS from tipping into a full-blown crisis. Indeed, the Chair of the Health Committee, the hon. Member for Totnes (Dr Wollaston), has said:

“Maintaining the ring-fence on health spending is not enough.”

I am sure the hon. Lady is right, but her problem—and the problem for everyone on the Conservative Benches—is that they have chosen a different spending priority. They have given a commitment to tax cuts for higher earners, which will cost an unfunded £7 billion. What that means in reality is that if the Tories get back in, any spare money will go towards filling that black hole and there will be nothing left for the NHS, so the outlook for the NHS under the Tories in the next Parliament is very bleak indeed. Given current policy direction on competition and the funding plans they have announced, the NHS is looking at a toxic combination of cuts and privatisation under a re-elected Tory Government.

By contrast, Labour’s priority is not tax cuts for some, but a strong NHS for all. We have found an extra £2.5 billion a year—that is not spin; it is money we have committed to—to build the NHS of the future, and the question before the House tonight is whether it should call on the Government to match it.

Labour’s plan is for a national health and care service—full integration of health and social care, starting in the home and building one team around the person. We will do that by recruiting 20,000 more nurses, 3,000 more midwives, 8,000 more GPs and 5,000 extra home care workers by the end of the next Parliament—a new generation work force in the NHS, working from home to hospital, transforming the delivery of care. Social care is prevention, and by uniting it with the NHS we can turn the financial tide around and place the system on a path towards financial sustainability.

Labour has a credible plan for the NHS and the money to back it up. This House needs to decide tonight whether it agrees and whether it is prepared to match the money needed to turn the NHS around. The decision we make tonight will clarify the decision before the country next May. Will our top priority be, as the PM used to say, those three letters: NHS? Or will it be tax cuts for some, but an NHS crisis for all? That is the choice. We have made ours and our choice is the NHS.

Care Bill [Lords]

Baroness Blackwood of North Oxford Excerpts

Tuesday 11th March 2014 Commons Chamber

[Mr Dorrell]

The right hon. Gentleman is 100% right. That is precisely what the care.data programme is designed to address.

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

My right hon. Friend is rightly concentrating on the benefits of the programme. Sharing large datasets clearly has big research and integration benefits, but we now have a huge confidence problem with the programme. It will be beneficial only if it gets widespread buy-in from patients. What does he believe is the answer if we are to regain the public’s confidence?

[Mr Dorrell]

First, we must concentrate the rationale for the programme on to patients. Looking back at how NHS England has got itself into this position over the past few weeks and months, I have lost count of the number of times I have been told how important the programme is for research. I absolutely agree that it is important for research, but the health and care system does not exist to support research; it exists to treat and care for patients. The logic of allowing commissioners to develop joined-up services that respond to individual people’s needs—and the pattern of need based on multi-morbidity to which the right hon. Member for Sutton and Cheam (Paul Burstow) has referred—must be placed centre stage in the justification for the improved handling of data in the health and care system.

I go back to the point that this must be about treating people, not conditions. We cannot achieve that if we do not have the information to allow us to connect up the experience of the patient between one part of the system and another. In regard to the logic behind NHS England’s plans, yes there is a research argument, but—with apologies to the research scientists—it is a secondary argument. The primary argument is that we must improve the services delivered to patients and service users.

Children’s Heart Surgery

Baroness Blackwood of North Oxford Excerpts

Wednesday 12th June 2013 Commons Chamber

[Mr Hunt]

That is what I absolutely want to do. One huge frustration for those on both sides of the House has been how the process has dragged on. If I could have come to the House today with a detailed timetable, I would have. Although we had internal access to the report before today while I considered its findings and reached a judgment, we believed that it was necessary for external stakeholders to see the report and give their view of how the timetable should proceed. That is why I have given NHS England until the end of July to come back with that timetable.

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

The Health Secretary is absolutely right that parents in my constituency have found this process deeply destabilising. Although they also want to see quality, they felt that their concerns about building up a good relationship with their medical teams and about accessibility and co-located services were simply dismissed. Will the Health Secretary assure me that that will not be the case in the future, and will he look more closely at the networking solution we have in Oxford and Southampton, which strikes a good balance between having a quality site further away and providing aftercare in an accessible site with trusted medical teams?

[Mr Hunt]

That is a very interesting thought. My hon. Friend will be pleased to note that the IRP report states that the whole care pathway, not just the surgery on its own, needs to be considered when we make this very difficult decision. I agree with her that this has been a very distressing process for every family involved and although we are suspending the process today, we have a responsibility to be honest with people. At the end of the process, there will be a difficult decision to take and we will honestly do our duty as Members of this House.

Community Hospitals

Baroness Blackwood of North Oxford Excerpts

Thursday 6th September 2012 Commons Chamber

[Dr Sarah Wollaston (Totnes) (Con)]

I beg to move.

That this House recognises and supports the contribution of community hospitals to the care of patients within the National Health Service; requests the Secretary of State for Health to commission a comprehensive database of community hospitals, their ownership and current roles; and believes that the assets of community hospitals should remain for the benefit of their community while allowing them greater freedom to explore different ownership models.

I warmly welcome my hon. Friend the Minister to her new role. She will know that there are more than 300 community hospitals in England. I used to work at one of the very smallest at Moretonhampstead in the heart of Dartmoor, so I know just how important community hospitals are, especially to isolated rural communities. I may have lost one, but I fortunately gained four, and I am happy to represent Brixham, South Hams, Dartmouth and Totnes.

Community hospitals vary in size and function—some are urban, some are rural, for instance—but they share a common theme: they are deeply rooted in their communities and provide an extraordinary level of support with volunteering and charitable giving through leagues of friends. The reason for that support is clear: people value their personalised approach and want to be treated closer to home. Community hospitals score well on things such as dignity, respect and nutrition. We should be treasuring and enhancing their role because although small is beautiful, unfortunately it can make them a tempting target for cuts.

The need for efficiencies in the health service is nothing new. I remember reading in 2009—before the general election—about the Nicholson challenge. We have known for some time that we have to make £20 billion of efficiency savings over the next four years—that is 4% efficiency gains year on year—but there is a misunderstanding about what this means. It is not about doing less of the same; it is about spending what we spend more efficiently and looking at the needs of our population. Over the next 20 years, the number of over-85s in our country will double.

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

In my constituency, Abingdon community hospital has played a fascinating role in supporting the wider NHS in Oxfordshire. It has assisted with the problem of bed blocking by supporting early and late-stage rehab and preventing patients from needing acute beds. I do not think that community hospitals should face cuts, given the role they can play in easing pressures on acute hospitals. Does my hon. Friend agree?

[Dr Wollaston]

I agree absolutely. Their role in so-called step-down care and rehabilitation is vital, and I am glad to hear that it is happening well in Abingdon.

Seventy per cent. of the total spend on health and social care goes on people with long-term conditions. We should all understand that the burden of disease in England has completely changed—from tackling life-threatening emergencies to managing people with long-term, complex conditions.

Health and Social Care (Re-committed) Bill

Baroness Blackwood of North Oxford Excerpts

Wednesday 7th September 2011 Commons Chamber

[Mr Lansley]

I beg to move, That the Bill be now read the Third time.

The national health service is among our most valued and loved institutions. Indeed, it is often described as the closest thing we have to a national religion. I am not sure that that was always intended to be complimentary, but I think it should be. People in this country believe in the NHS wholeheartedly, share in its values and the social solidarity it brings, and admire the doctors, nurses and staff who work in it.

It is because I share that belief that I am here. Over eight years, I have supported, challenged and defended the NHS. As a party, and now as a Government, we have pledged unwavering support for the NHS, both in principle, because we believe in the values of the NHS, and in a practical way because we are reforming the NHS to secure its future alongside the additional £12.5 billion of taxpayer funding over the next four years that we have pledged for the NHS in England.

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

Will my right hon. Friend give way?

Congenital Cardiac Services for Children

Baroness Blackwood of North Oxford Excerpts

Thursday 23rd June 2011 Commons Chamber

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

I, too, congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on his leadership in securing the debate. I open my remarks by paying tribute to Oxford’s paediatric cardiac team, including Professor Steve Westaby. The team have saved countless lives and have the complete confidence of the patients and families who have asked me to speak up for them today. I also pay tribute to the Young Hearts charity, which has stood up for children with congenital heart disease and their families in Oxfordshire and presented a petition, which I am holding in my hands, with thousands of signatures to the Prime Minister in his constituency this month. They have done much to assure services in Oxfordshire.

Few would take issue with the basic aims of the Safe and Sustainable review; who does not want to improve outcomes for children with congenital heart disease? That is not where the concerns lie. The review works on a simple premise: more surgeons doing more surgeries will achieve better outcomes for more patients. That makes perfect sense, but in this instance, as the motion states, size is not everything. Although the simple centralisation of specialist services is backed by clinical evidence, some clinicians in Oxford, Southampton and elsewhere are of the opinion that it draws on too narrow an evidentiary base and that matters such as the co-location of services, assessed travel and population projections must also be considered.

On co-location, for example, a 2008 Department of Health report states that cardiac surgery requires the absolute co-location of paediatric cardiology, paediatric critical care, specialist paediatric anaesthetics, specialist paediatric surgery and specialist paediatric ear, nose and throat services. Even though Safe and Sustainable states that the co-location of those services should be mandatory, it is not clear how the four proposed options meet the standards of the framework of critical interdependencies or, for that matter, the standards of Safe and Sustainable itself. I hope that the Minister will note those grave concerns, which patient groups, families and clinicians have expressed, and will ensure that the joint committee of primary care trusts takes the process forward, clarifying the issue of the co-location of service and properly and transparently communicating that clarification to those groups.

A child with congenital heart disease does not exist in isolation. He or she is cared for tirelessly by family members who have to make terrifying treatment decisions, and by siblings who have to accept that home life is on hold while parents go to and from hospital and everyone concentrates only on keeping that child alive. That is what parents do for their children. It is what they sacrifice and do without hesitation, because nothing matters more than bringing that child home again, happy and healthy, so that everything can get back to normal. No matter how freely they give that care, however, caring for a child with congenital heart disease puts massive stresses on parents and siblings, and the outcome of the review should also try to relieve that pressure, if at all possible.

That is not just a moral argument; paediatric patient outcomes improve when carers cope better. I know that Ministers believe that the best possible surgical outcome is the best way to help families, but families who come to see me are worried that they will not be able to get to the hospital for the surgery in the first place; that there will be longer waiting lists; that they will not have continuous care under surgeons whom they can trust with their child’s life; that staff at units that close will not be able to move to those that scale up; that we will lose dedicated people from the NHS; and that there will be a shortfall in service while new staff are trained up. All those concerns are just as valid and significant as ensuring that the surgeon has the necessary skill once he gets the patient on to the operating table.

The irony is that, while the Safe and Sustainable options are causing that concern, Oxford and Southampton already have an option that is working as we speak. The south of England congenital heart network offers the quality guarantees of an increase in clinical team size and patient base that Safe and Sustainable seeks, while creating and retaining the continuity of care and patient access that local clinicians and patients fear losing. That network was developed and is led by clinical teams at Oxford and Southampton; it has five congenital heart surgeons and nine consultant paediatric cardiologists; and it is the first time that two teaching hospitals have collaborated to provide joint tertiary clinical service.

That is exactly the kind of networking arrangement that Safe and Sustainable aspires to create, but the network puts the patient first, not the surgeon. It makes the best use of existing services but does not require extensive restructuring of human or physical resources; it addresses the problems of waiting times, travel times and co-location which Safe and Sustainable has failed to address; and, most importantly, it has been tried and tested for more than a year.

There is a risk that Safe and Sustainable will be seen as a top-down, inherited review, so a locally innovative system such as that network, which is supported by local heart groups, supported by local clinicians and clinically driven, is something that the Government should seek to support.