Paediatric Cardiac Surgery

Andrew Smith 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.