Paediatric Cardiac Surgery

Liz Kendall Excerpts

Wednesday 7th July 2010 Westminster Hall

[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Benton, and to have secured this debate on the Government’s review of children’s heart surgery.

I am sure that Members in all parts of the House agree that children who need heart surgery should have the best-quality care. Outstanding treatment is provided in many parts of the country, including at the congenital heart centre at Glenfield hospital in my constituency. My first visit as the new Member of Parliament for Leicester West was to the centre. I met staff in the paediatric intensive care unit, which is the seventh busiest such unit in the country, and staff on the children’s ward and from the cardiac nurse liaison team, seeing for myself the excellent professional and high-quality care that they provide.

I also talked to parents about their experiences, and they spoke about their shock at discovering that their child had a congenital heart problem, their fears about the operation and other procedures, and whether their child would survive. They talked about how they were coping with having a very sick child at the same time as holding down a job and looking after other children, particularly if they lived a long way from the hospital, as many of the parents do. Above all, however, they talked about the excellent care that they receive at Glenfield and about how the help and support from the doctors, nurses and other staff is second to none. I am proud to have Glenfield’s congenital heart centre in my constituency, and I express my gratitude to all the staff for their excellent work.

Although excellent care is already available in many parts of the country, experts in children’s heart surgery have for some while argued that change is necessary, to ensure that all children get the highest-quality care. Those experts include the Royal College of Surgeons, the Society for Cardiothoracic Surgery, the national clinical director for children, young people and maternity services, and the NHS medical director.

Children’s heart surgery is complex, and is becoming ever more sophisticated. Technological advances mean that care is becoming increasingly specialised, capable of saving more lives and improving outcomes for very sick children. Many clinicians, however, argue that services have grown up in an ad hoc manner and now need to be better planned to ensure that all care is safe and sustainable, and that surgeons need to treat sufficient children and have sufficient variety in their case load to be skilled and experienced enough to deliver care of the highest quality. They further argue that that is likely to require fewer and larger specialist centres. I have always believed that when changes in hospital services are necessary to improve patient care, we should have the courage to make them happen. I therefore welcome the review, which was initiated by the previous Government.

However, we need to ensure that the right principles and criteria drive the review, the right balance is struck, the right weight is given to the different criteria and principles, and the views of parents and families are properly heard. The Government document “Children’s Heart Surgery: The Need for Change” sets out four key principles to guide the review:

“High standards. All children in England who need heart surgery must receive the very highest standards of NHS care, regardless of where they live… Personal service. The care that every centre provides must be based around the needs of each child and family… Local where possible. Other than surgery and interventional procedures all relevant treatment should be provided as close as possible to where each family lives… Quality. Standards are being developed and must be met to ensure that services deliver the best care.”

I want to say more about those principles. My first point is about the number of surgeons and of patients required in each centre to ensure that all children receive the best possible care. “The Need for Change” stresses that each unit needs enough surgeons to provide care 24/7 and to avoid surgeon burn-out in this complex and demanding field. It questions whether units with two or fewer surgeons can achieve that goal, and states that four surgeons is “the magic number.”

The document also emphasises that surgeons need to treat enough patients and have a sufficient variety of cases to get the skills and experience they need, and to ensure that junior doctors have the best training. I fully accept the review’s concerns about units with two or fewer surgeons, but from talking to clinicians I understand that the clinical evidence on the optimum number of surgeons and the precise number of patients a centre should treat a year is the subject of some discussion, both in this country and internationally.

The centre at Glenfield hospital provides care 24 hours a day, seven days a week. It has three surgeons, treating about 300 cases a year. The staff in the centre are determined to continue to improve the quality of care that they provide, and are planning to appoint a fourth surgeon in the next few months and increase the number of operations to more than 400 a year. Nevertheless, Glenfield hospital and my local primary care trust are very clear about the fact that the centre already delivers high-quality, safe and sustainable care.

Wider clinical issues also need to be considered by the review. Many children who need heart surgery often have other complex conditions, so the review needs to consider the range of surgical and other specialties available in hospitals with children’s heart surgery units, and look at how they all link together. Glenfield deals with congenital heart defects in babies, and follows them through childhood and into adult life. Staff and patients say that that continuity of care is a crucial factor in delivering high-quality, personalised services, and it will become increasingly important as survival rates improve.

Glenfield is also the busiest of four ECMO centres in the UK. ECMO—extra corporeal membrane oxygenation—allows blood that has been drained out of a patient’s body to have the carbon dioxide removed and oxygen added before being returned to the body, thereby allowing the heart and lungs to rest and recover. Because of its ECMO facility, Glenfield can provide complex thoracic, or chest, surgery in children, especially for those who also have cardiac problems, as well as cardiac surgery for children who have reduced heart or lung function and who otherwise might not be able to have heart surgery, or recover.

Glenfield is the only centre in the country that provides ECMO for patients of all ages, from newborns to adults. It treated 180 patients last year, including 50 swine flu patients. ECMO is provided by the same staff who work in the congenital heart centre, so if the centre closed, Glenfield would lose its ECMO service too—a service used by patients across the country.

Another issue that the review must fully consider is access to care. “The Need for Change” says that most parents would travel long distances to ensure that their children got the best possible care. That is true. Parents would travel to the ends of the earth if they had to. Many parents whose children need heart surgery are, however, already travelling very long distances. Glenfield’s centre serves the entire east midlands, with outreach clinics in Nottingham, Derby, Mansfield, Peterborough, Boston, Grantham, Lincoln and Kettering.

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

I congratulate my hon. Friend on securing the debate. I know that the time available is limited, but I wish to underline the importance of the point that she has just made in relation to our own heart centre in Oxford. It is critically important that there is close liaison and consultation with the parents whose babies are affected and who are campaigning to save the centres.

[Liz Kendall]

I agree absolutely with my right hon. Friend. Many parents and staff are rightly concerned about the implications of travelling longer distances, particularly in emergencies.

I am a former director of the Ambulance Service Network, and I know that paramedics are highly trained professionals—increasingly to degree level—who can provide lifesaving treatment for patients while taking them to specialist centres further away, but that is not always possible, and the review must thoroughly consider the implications of further travel for the lives that could and will be saved.

High-quality care is not just about standards of surgery, the links with other specialisms or the ability to access planned and emergency care. A recent event organised to discuss children’s heart surgery in Leicester was attended by more than 800 parents and former patients, and those present felt that many more people would have attended if the event had not been held mid-week and during working hours.

The families said that the help and support that they get from the nurses, doctors and other staff at Glenfield are outstanding, and the key point that came up time and again was the excellent communication and support provided by the centre. Parents spoke about how staff go the extra mile to explain diagnoses and procedures simply and clearly, often at a frightening and worrying time. Every child gets a diary that explains in a way the whole family can understand what care they have received. It provides something for the children to look back at when they are older.

Parents said that the staff were like members of their own family; they could ring them day or night if they had any concerns. That familiarity with individual patients and families is crucial. All the studies by groups such as the Picker Institute of patients’ experience of care prove that individual, personalised care and communication are vital. One young man said that the staff knew him as a person, not as just another case, and that he was worried that that would be lost in a larger unit or if his care were split between outreach clinics and other centres.

Families also spoke about the fantastic help they get from the Heartlink charity at Glenfield, which has raised money to provide accommodation so that parents can stay overnight with their children, a play area so that brothers and sisters can play while families are visiting the child, and day trips for the patients as they get older. Those wider aspects of care are vital to parents and patients, but are barely mentioned in “The Need for Change”. I urge the Minister to ensure that the review has fully considered those issues when it makes its recommendations.

The final factor that the review of children’s heart surgery needs to take into account is affordability. It must be driven by the need to improve quality, not to cut costs, and, in these financially constrained times, it must acknowledge that there will be costs associated with changing children’s heart surgery in England.

[Nicky Morgan (Loughborough) (Con)]

Like the hon. Lady, I have visited the Glenfield centre, which is close to my constituency. As the parent of a healthy child, I felt humbled by the care that I saw there. The point that she is making about cost is important, because we appear to be achieving neither safer care—there has always been safe care—nor more efficient care. I understand that the reconfiguration would be very expensive, and she speaks rightly about straitened economic circumstances at this time.

[Liz Kendall]

I agree absolutely with the hon. Lady. The costs associated with changing children’s heart surgery centres include not just physically expanding a centre’s buildings, beds and equipment, but retraining staff. When I went to Glenfield, I was told that many of the staff would not move if the centre were changed. It takes time and money to train new staff, particularly in such a specialised area, and the review must take that into account when it makes its recommendations.

[Sir Peter Soulsby (Leicester South) (Lab)]

I, too, congratulate my hon. Friend on obtaining this timely debate and on how she is expressing her concerns. She obviously has considerable understanding and experience of and expertise in these matters. Will she join me in asking the Minister to give an assurance that cost will not be the overwhelming issue that drives the decisions, and that the concerns, fears and wishes of parents and practitioners will be foremost in his consideration?

[Liz Kendall]

I very much agree with my hon. Friend. The review must not be driven by a desire to cut costs, and it must acknowledge that increased costs are likely with any change to services.

I welcome the Government’s review of children’s heart surgery and their objective of ensuring that all children get the best quality care, but I urge the Minister to ensure that the full range of clinical factors—not just the ratio of surgeons to patients—is taken into account as part of the review, in particular implications for accessing care, including in emergencies, and the knock-on effects for other specialisms. I urge him to ensure that other aspects of care that are critical to parents and families, such as the quality of communication, and the wider facilities and support, are properly considered.

I urge the Minister not to conduct the review on the basis of cutting costs—there will be costs associated with any changes—and to ensure that the views of parents, other family members and former patients are fully taken into account before recommendations are made in the autumn. I look forward to his response.

--- Later in debate ---

[The Minister of State, Department of Health (Mr Simon Burns)]

I congratulate the hon. Member for Leicester West (Liz Kendall) on securing this important debate on the national review of paediatric cardiac surgery. I pay tribute to the dedicated national health service staff who work in paediatric cardiac care. It goes without saying—hon. Friends will agree—that during the course of their working day they do tremendous and fantastic work looking after critically ill and vulnerable children.

As the hon. Lady said, this is a complex and understandably emotional area. In 2008, the NHS management board asked the national specialised commissioning group to explore whether a reconfiguration of paediatric cardiac surgery services in England could improve levels of safety and sustainability. There had not been a problem at a particular centre, but surgeons, other clinicians, parent groups and the media had raised concerns over the risks posed by the unsustainable nature of smaller surgical centres.

The national review aims to ensure that paediatric cardiac services deliver the highest standard of care, regardless of where patients live or which hospital provides their care. All 11 centres in England that currently provide paediatric cardiac surgery, including Glenfield hospital in Leicester, are being assessed as part of the review. The objective of the review is not to close paediatric cardiac centres—I assure the hon. Lady that this is not a cost-cutting exercise.

Surgery may cease at some centres, but they would continue to provide specialist, non-surgical paediatric cardiology services for their local population. The review seeks to ensure that as much non-surgical care as possible is delivered as close as possible to the child’s home through the development of local paediatric cardiology networks. I emphasise that no recommendations have yet been made about which centres should continue to undertake surgery.

Recommendations on future services will be published for the three-month consultation in the autumn this year. The trend in paediatric cardiac care is towards increasingly complex surgery, which requires large surgical teams that provide sufficient capacity to train and mentor the next generation of surgeons. The focus of the review is to develop services that are clinically appropriate, sustainable and safe.

As I said earlier, paediatric cardiac services are complex, and it has taken time to set up a transparent review structure that takes into account the views of patient and parent groups, and relevant professional societies. As part of the review, the commissioning group has held 10 stakeholder events. The invaluable contributions from parents and NHS staff will inform future stages of the review process.

The commissioning group has set a series of service standards, developed by experts, that take into account the contributions of parents and professionals. The standards cover the whole of paediatric cardiac services and emphasise the need for networks of providers to ensure a coherent service for children and their families. The current centres have been asked to assess themselves against those standards, and an expert panel chaired by Professor Sir Ian Kennedy has visited and independently assessed each centre. The standards will be subject to public consultation this autumn together with the recommendations for change.

I shall now deal with the standard for the numbers of procedures and of surgeons to which the hon. Lady referred. Questions have been raised about the evidence that underpins the standards for the minimum number of paediatric cardiac surgical procedures per year, and for minimum staffing levels. The recommended level of activity—between 400 and 500 procedures a year—is based on the level needed to provide good quality care around the clock while enabling ongoing training and mentoring of new surgeons. The professional consensus is that having four surgeons in each centre should enable services to avoid the risk of surgeons performing only a small number of some of the more complex procedures, which may not be enough to maintain their skills. Transforming a service from adequate to optimal requires sufficient volume, expertise and experience to develop what Sir Bruce Keogh calls “accomplished teams”.

[Liz Kendall]

Will the Minister provide the source for the recommendation of four surgeons and 400 to 500 patients a year? Which peer-reviewed journal provides the clinical evidence for that?

[Mr Burns]

As I said a minute ago, that recommendation is the consensus within the professional bodies. However, I am more than happy to give the hon. Lady a commitment that I will write to her after this debate to elaborate, providing as much extra detail as I can, if she believes that will be helpful.

Turning to the other criteria, the review will also take account of surgical centres’ physical location relative to others and the impact of reconfiguration on other important services, including the highly regarded ECMO or total life support service at Glenfield hospital in the hon. Lady’s constituency, which she described with such eloquence in her remarks. The final part of the review will involve centres’ ability to attract key clinical staff and their families. I hope I can reassure the hon. Lady that transportation options and travel distances will be evaluated, including travel times specifically. The Paediatric Intensive Care Society has advised on the issue, and we continue to investigate and seek advice. I appreciate fully the importance of the issue and the concern that it causes many families.