Leeds Children’s Heart Surgery Unit

Stuart Andrew Excerpts

Tuesday 30th October 2012 Westminster Hall

[Stuart Andrew (Pudsey) (Con)]

It is a pleasure to serve under your chairmanship, Mr Hollobone. I am grateful to have a further opportunity—you might wonder why we are taking another chance to raise the issue—to discuss the Leeds children’s heart unit. Given that there is a new ministerial team at the Department of Health—I am delighted to welcome the Under-Secretary of State for Health, my hon. Friend the Member for Broxtowe (Anna Soubry) to her new post—and that the decision on the unit has been referred to the Independent Reconfiguration Panel, it is critical that the independent review gets this right. The issues that we have been raising need to be assessed in great detail by the independent panel.

It is important for us to remind ourselves of the key issues. I want to make it crystal clear at the outset that we have always supported the objective of the review. Of course, we all want the best services for our children, and having fewer specialist centres is a principle that we have never doubted. My grave concern is that the review will fail to meet the objectives, particularly in the north of England, subjecting my constituents and those in Yorkshire and Lincolnshire to a worse service than the one that they currently enjoy. That is why I want to outline our concerns.

First, the review has always made it clear that units need to perform 400 operations or more a year. If that is the agreed standard, we must accept that. However, a survey by PricewaterhouseCoopers showed that the majority of patients who live in east, west and south Yorkshire would not travel to Newcastle. Instead they would go to Liverpool, Birmingham, or, in some cases, even to London. Anyone who knows our area knows that that is instinctively the case. Since the decision was made, adverse weather over the past couple of months has caused huge problems on the A1. Would a parent go there or would they choose less problematic routes? The issue is made clear in the analysis. The independent review document states:

“There was more reluctance amongst members of the public to consider travelling to Newcastle as a centre. If the preference of the parents and the public were factored into assumptions of patient flows, they may have implications for projected levels of activity at – in particular – the Newcastle centre.”

What is the review’s answer to the problem? At the decision-making process meeting—a seven-hour meeting to rubber-stamp a decision that clearly had already been made—it was said that patients preferring centres other than Newcastle would be influenced by referring doctors, with the assumption made that they would be pointed to Newcastle. Frankly, the evidence points to the contrary: all 20 referring clinicians in the Leeds network, whose views were never sought by the Safe and Sustainable review, said that they would not refer patients there for treatment.

In addition, the review argued that if 25% of patients from Leeds, Sheffield, Doncaster and Wakefield chose to go to Newcastle, that unit would perform 403 operations a year, conveniently just over the target of 400. That also assumes that 100% of patients in the other remaining postcodes, including Hull and Harrogate, would go to Newcastle. Newcastle can only reach the 400 figure if all the assumptions—that 25% will go from south and west Yorkshire, that clinicians will refer, and that 100% in Harrogate, Hull and elsewhere would use the centre—are correct, but there is no evidence to support such assumptions.

Given the importance of the 400 figure, it is staggering that it has been reached on the basis of assumptions. I know my hon. Friend the Minister was a barrister before entering the House. I wonder how the court would have reacted if she had based her defence or her prosecution on assumptions. That is why I believe the review is flawed. If we are going to change, it must be for a much better service.

That brings me to the issue of co-location. The foundation of the review was the inquiry at Bristol, and ensuring that such events never happen again is crucial. A key recommendation of the inquiry was to have all paediatric services under one roof. The British Congenital Cardiac Association has stated:

“It is important that the centres designated to provide paediatric cardiac surgery must be equipped to deal with all of the needs of increasingly complex patients. For these services at each centre to remain sustainable in the long term, co-location of key clinical services on one site is essential.”

I completely agree with that statement. Indeed, Professor Sir Ian Kennedy, in his report following the Bristol inquiry, stated in recommendation 178:

“Children’s acute hospital services should ideally be located in a children’s hospital, which should be physically as close as possible to an acute general hospital. This should be the preferred model for the future.”

Yet despite Sir Ian’s assessment panel describing the location of key services on a single site as optimal, Sir Ian accepted a watered-down definition of co-location, which allowed Newcastle to be described as a co-located service, and that led to the decision to close Leeds, despite the Paediatric Intensive Care Society’s assertion that it

“would dismiss any suggestion that a service located on another hospital within the same city can be regarded as being equivalent to a service located on the same hospital site.”

What has caused Sir Ian Kennedy to change his mind? Anyone visiting the Leeds unit will know that it is a wonderful, integrated unit. It has all the services that are needed for children with complex and multiple needs. They need paediatricians there with other specialities. On my several visits to that unit, on each occasion I have seen paediatricians coming to help patients with complex needs.

[Philip Davies (Shipley) (Con)]

My hon. Friend has led this campaign in Parliament with his customary charm and tenacity. As ever, he is making an excellent case. The national health service is paid for by the public for the benefit of the public. Ultimately, the services that we provide should be the ones that the public want. MPs from our region, from across the parties, are here today, and it is clear that the people in Yorkshire have confidence in the unit, want it to continue and believe it will offer the best possible treatment. Should that not be one of the most important factors that the Government bear in mind?

--- Later in debate ---

[Stuart Andrew]

I am grateful for my hon. Friend’s kind words. It has been a tremendous cross-party campaign. People right across our region have been speaking in high praise of the unit. My hon. Friend is absolutely right that it should be about what patients want. Patient choice is a bedrock of the NHS. I hope that today’s debate will enable us further to put across our grave concerns about the review.

[Julian Smith (Skipton and Ripon) (Con)]

Another concern that people have raised is the initial consultation that took place, especially with regard to the language and translation for a large section of our community who suffer particularly from congenital heart disease. Will my hon. Friend comment on that? Does he think that that issue has been fully addressed thus far in the process?

[Stuart Andrew]

No, I do not. The projections of population growth, particularly in the south Asian community, are a huge issue that has not been fully addressed. I hope that that issue will be taken up by the independent panel when it considers the detail of the decision that was reached.

It would be a backward step for us to go to a unit that was separated from the rest of children’s services by three miles. We have a wonderful unit at Leeds general infirmary, where all the children’s services are under one roof. Staff there talk about the difference between now, and when the unit was at Killingbeck. There were great problems with getting doctors to travel there, even though it was only a couple of miles away. It is unacceptable for our constituents and poorly patients to receive a much lesser overall service, because the rest of the services will be three miles across the city of Newcastle.

A phrase that I have heard a lot in this campaign is, “Bring the doctors to where the patients are and not the other way around.” The review has been inconsistent regarding whether population density matters. The consultation document said that Birmingham gets a high number of referrals because of the large population in its catchment area, and it should therefore remain as a unit, but that simply does not seem to apply to Leeds. Leeds serves a population of some 5.5 million, double the 2.6 million in Newcastle, and projections show that that number will increase. The recent census showed that the population of the north-east had increased by 57,000, compared with an increase of 300,000 in Yorkshire, so surely we should put the services where the population is, and where it is growing.

The health impact assessment stated that options G and I were the only ones to induce few negative impacts—option G being the one that includes Leeds—and it admitted that option B would have a more negative impact than option G. That information was released only at the meeting on 4 July.

I want to talk about public opinion because, as my hon. Friend the Member for Shipley (Philip Davies) mentioned, support for the campaign has been phenomenal. Some 600,000 people have signed a petition, which shows the strength of feeling in our area, but those signatures were counted as just one response, while 22,000 separate text messages in support of Birmingham were counted as 22,000 separate responses. The NHS constitution states that the NHS is guided by several key principles, one of which is:

“NHS services must reflect the needs and preference of patients, their families and their carers. Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment.”

The fact that so many people felt compelled to sign the petition shows the strength of feeling that they have.

I have spent a great deal of time in the Leeds unit, speaking to families that use it. One of them is the family of one-month-old Lauren, who had problems with feeding and was referred to the Airedale hospital when she was approximately one week old. A heart problem was then suspected, and she was referred to Leeds general infirmary, which has strong links with Airedale. She was transferred to LGI through Embrace, the Yorkshire and Humber specialist ambulance service—a service that does not exist in Newcastle—and it took four hours to get the baby in a stable enough position to undergo the journey to Leeds. Imagine expecting that child to go all the way to Newcastle. Her mum, Sara, said that she could not understand why, given the size of the population in Leeds and the surrounding areas, as compared to the size of the population in Newcastle, it was contemplated making people travel further and separating them from their often crucial family support. I know from my time at Martin House children’s hospice how important it is to have family support close by. The patients are in incredibly stressful situations, and it is critical that others can share in the care and visit the children.

[Julian Smith]

What assurances has my hon. Friend had regarding ambulance services? He is right that Embrace, the Leeds service that looks after children in getting them from home to hospital, is second to none. How will Newcastle get anywhere near that quality of service in the time scale required?

[Stuart Andrew]

The answer is that I do not know. I have not been given any assurances that that will happen, which again highlights the crucial problem with the decision: we will be subjecting our constituents to a lesser service.

I spoke to another family at the unit. Libby was diagnosed at 20 weeks with complex heart problems, and her mum was referred for the rest of her antenatal care to LGI, where the baby was delivered; that again demonstrates the crucial co-location of services. It was clear that the daughter needed treatment immediately after birth, and at six days old she had her first of many operations. As she has complex medical needs, she has also needed support from the paediatric neurology and renal teams, and all those services are under one roof, which provides first-class care. My final example is of a child who had an operation in Leeds at 18 months. All the care was then delivered in Barnsley by doctors from Leeds. Leeds doctors have been out working in all the towns and cities across Yorkshire, at 17 different locations, over the past decade. We have a well-established network of services. Those are just a few examples of the kind of impact that the proposal could have on any of our families.

[Fabian Hamilton (Leeds North East) (Lab)]

I congratulate the hon. Gentleman on securing the debate, which, as he rightly points out, is extremely important. Does he agree that it is not just the children’s congenital heart problem services that serve us so well at Leeds general infirmary, but the post-16 services, which the review did not take into account? Does he also agree that Leeds is perhaps the leading centre in the country for training post-16 congenital heart problem surgeons in what is a valuable and important skill?

[Stuart Andrew]

The hon. Gentleman makes an absolutely first-class point. Indeed, I think we have all asked the question: why is the review into children’s services being held separately from that into adults’ services? It is bizarre. We know that the surgeons operating on adults are often the same people who operate on children. We have yet to get a sufficient explanation of why the reviews have not been run in tandem, and we expect, or at least hope, that the Independent Reconfiguration Panel will consider that issue.

That brings me on to my next point. I wholeheartedly welcome the fact that the Secretary of State has decided to refer the decision to the Independent Reconfiguration Panel—that is great news—but it is absolutely crucial that we get the decision right. There is no point in simply reviewing the decision; we want the panel to consider the whole process, right down to the information that was used at the very beginning regarding what the services were like at the different units. That must include the scoring.

[Hilary Benn (Leeds Central) (Lab)]

I echo other Members’ compliments about the force of the hon. Gentleman’s case. The review, if it is about anything, must be about the right clinical outcomes for children. That is why we are all here. We are all so passionate about the Leeds children’s heart surgery unit, which I have the privilege to represent. Will he confirm that despite the impression that is being given in some quarters, no assessment of the relative clinical effectiveness of the units considered in the review has been undertaken? Does he agree that the independent review must do that, as we all believe that it would lead to the decision being overturned?

[Stuart Andrew]

The right hon. Gentleman is absolutely right. He makes a clever and important point, because that is the foundation of the decision, and the information either does not exist or is incorrect. I want a root-and-branch review of the decision and all the information that was at the disposal of the Safe and Sustainable review team. I hope we can get an assurance today that the panel will do that.

There are further problems with the decision-making process. The joint committee of primary care trusts is still not disclosing information requested by the joint health and overview scrutiny committee in our area, including the agendas, minutes and reports of several meetings material to the JCPCT decision. There is also no evidence that the joint health and overview scrutiny committee’s report was even discussed by the JCPCT. The JCPCT has refused to disclose the breakdown of the Kennedy scores awarded to each children’s heart surgery unit by the panel. The value of the total scores, which are the supposed measure of quality, could neither be understood nor scrutinised.

I think we all believe that the JCPCT has misused the Kennedy scores. The JCPCT requested not to be shown the breakdown of the Kennedy scores, which raises many questions about the JCPCT’s ability to make an informed decision. The Kennedy scores were not prepared for the purposes of comparing one centre with another, yet a ranking of the units by total score was published. The scores were misused as indicators of quality, even though the scores did not assess units on what most of us would regard as measures of quality, such as clinical effectiveness, safety and patient experience.

The total unit score was given as 401 for Leeds and 425 for Newcastle. Those scores were published with the independent expert panel’s report in 2010. According to the first breakdown of the total scores, however, which was only released after the JCPCT made its decision, the Leeds unit gets 414 points and the Newcastle unit gets 421 points. Despite the enormity of the review, a basic mistake appears to have been made in the calculation. That matters because, in the eyes of the JCPCT, which saw only total scores, the advantage of the Newcastle unit was more than trebled from seven points to 24. When that was pointed out to the JCPCT, a second set of sub-scores was published that still did not add up to the original scores of 401 for Leeds and 425 for Newcastle; it stated that the Leeds unit outscored Newcastle on the core clinical standards used by Professor Kennedy by 347 points to 336. On care quality, Leeds is ahead; Newcastle outscores Leeds only because of the addition of leadership and vision standards, which are non-clinical standards covering IT and business strategy, working practices, and so on, that were developed by commissioners, not clinicians.

When the fact that Leeds outscores Newcastle on core clinical standards was pointed out to the JCPCT by the Yorkshire and Humber joint health and overview scrutiny committee, a third set of sub-scores was published, with the dubious claim that they were the raw Kennedy scores. The scores did add up to the original 401 for Leeds and 425 for Newcastle, but, mystifyingly, they now put Newcastle ahead of Leeds on core clinical standards. It is unclear which of those different sets of scores was used by the JCPCT because they give such different impressions.

The Kennedy scores were subject to a weighting system that disproportionately emphasised certain aspects of the assessment in a way that produced misleading results when used in a comparative process. No explanation was given for the way the weightings were worked out. I could address further issues, but I am aware that other hon. Members want to take part in this debate.

We suggested that the JCPCT’s decision be implemented elsewhere, but that in north-east England, both Leeds and Newcastle remain open and that the decision be delayed until April 2014. That would give an opportunity for patient choice and for parents to consider which centre they want to use, as is their constitutional right. By the end of that period, each centre would have to demonstrate that it is fully compliant with all the standards set by the Safe and Sustainable review. The judicial action brought against the JCPCT by Save Our Surgery might then cease; that would avoid the risk of sinking the review in its entirety. Leeds and Newcastle would have the opportunity to demonstrate their compliance with Safe and Sustainable standards. Less controversial decisions taken by the JCPCT could proceed elsewhere in the country, and the Government would be shown to be listening to the concerns of patients. That would give a clear message from the Department of Health that patient choice comes ahead of professional convenience. We made that suggestion, and it was rejected out of hand in no time at all. It is a sensible proposal for a solution that would allow us the very best services for our children and young people, as evidenced by where people go and what services they want.

Finally, I attended last week’s Westminster Hall debate on the Leicester unit. My hon. and learned Friend the Member for Harborough (Sir Edward Garnier) summed up the debate well. There is no point in my trying to come up with a fancier conclusion, so I will do him the honour of quoting what he said:

“The House does itself no great service if it shilly-shallies around process and avoids the question. As Members of Parliament, we must ensure that the question is put…The Secretary of State has the levers of power in this question and he must pull them—he must exercise them—and make a decision…I do not care who made the decision or how the dainty route was created to get to it. We all know that the current decision is wrong and needs to be dealt with.”—[Official Report, 22 October 2012; Vol. 551, c. 188WH.]

[Several hon. Members]

rose—