I thank you, Madam Deputy Speaker, for this opportunity to speak on a sensitive subject. Few would disagree that Britain is a friendlier place for disabled people than it was a few decades ago—better, that is, unless we are talking about a disabled baby in the womb. The contrast between the way we see disabled people before and after birth could barely be starker. A disabled unborn child has effectively no rights up to birth. Many people are shocked to learn that he or she can be aborted right up to birth—as many as 16 weeks beyond the 24-week threshold for able-bodied babies. But the moment after birth, a whole panoply of rights and support suddenly comes into play for the disabled child. I know that from personal experience, and here declare an interest. My own son, Sam, was born with a club foot, one of the defects for which an abortion up to birth can be obtained. Yet within minutes of his birth, the hospital telephoned its specialist in treating club feet, who was on leave at the time and who rushed in within two hours to begin manipulating Sam’s foot.
On the issue of abortions up to birth, does my hon. Friend share my belief that where the disability may be relatively minor—a cleft palate or something such as that—the public would be very concerned to learn that these were allowed literally right up to birth?
Indeed I do, and I thank my hon. Friend for that intervention. Although there are not many such abortions, there are still some taking place for treatable and relatively minor defects, such as a club foot. My son had physiotherapy every day for the first year of his life. He wore a calliper in his early years and he had two operations until into his teens, but now one would never know, unless one was a specialist, that he had been born with a foot defect. Yesterday, Sam was 21, and in the past few days has heard that he has been admitted to Oxford university. It is hard to think that such a treatable disability could have deprived him of life, and he is far from alone. I believe that the footballer, Steven Gerrard, was born with a club foot.
We have allowed a completely inconsistent and contradictory approach to disability to develop in this country with reference to the born and unborn child, and for that reason I am asking the Minister to review the application of this legislation. To clarify, the Abortion Act 1967 was amended in 1990 to provide for abortion up to, and during, birth where there is “substantial risk” of “serious handicap”—often called ground E abortions. But neither of those terms have statutory definitions. Instead, what constitutes “substantial risk” or “serious handicap” is left to doctors to decide, with differing outcomes across the country, and that difference can mean life or death to an unborn child. Professor Gordon Stirrat gives an example of a couple seeking abortion because of a cleft palate at 34 weeks, where there was a significant difference between doctors who refused an abortion under ground E and other doctors who interpreted the law as covering the couple’s situation.
I congratulate the hon. Lady on bringing this very important matter to the House for consideration. It was mentioned in Prime Minister’s questions today, for example. Does she agree that the UN convention on the rights of the child, which protects the rights of children, and the Equality Act 2010, which outlaws discrimination on grounds of disability, would demand that this House should change this grossly offensive law that allows children over 24 weeks to be aborted?
The hon. Gentleman makes a relevant point.
Developments in the law, in medicine and in cultural attitudes have led me to introduce this debate. Because of the lack of clarification, the law is being applied in what one barrister has called a haphazard fashion. In 2007, the Select Committee on Science and Technology recommended that the Department of Health produce guidance that would be clinically useful to doctors and patients in this regard, and in response the Royal College of Obstetricians and Gynaecologists provided updated guidance in 2010, but there still seems to be a considerable difference in views and working practice about what comes within the law and what does not. That is concerning for parents, practitioners, law makers and disabled people, many of whom believe it is now time to review the framework within which this law operates.
It is hard to see the differing treatment of disabled fetuses and able-bodied fetuses as anything other than discrimination, about which disability groups are particularly concerned. Medical knowledge has changed radically since 1990, and even more since 1967, and there have been improvements in fetal medicine, including the ability to correct disabilities, even within the womb before birth.
I, too, congratulate the hon. Lady on bringing this important matter before the House. As the father of a disabled boy who had eight years of a wonderful life—he had spina bifida and hydrocephalus, he gave much love and everybody who knew him loved him greatly—I join her in her plea for an end to discrimination against children in the womb who are disabled. She makes an important point about developments in medical treatment, even within the womb, especially in the area of spina bifida.
I thank the right hon. Gentleman for that intervention. He makes a pertinent point. Disabled children can enjoy life and can give great joy to their families. Even disabilities such as Down’s syndrome cover a very wide spectrum and we need to remember that. When mothers and fathers hear the news about a child’s diagnosis with fetal disability, it is important that they are given information about the spectrum and about their options.
We have seen changes in neonatal intensive care, palliative care, paediatric surgery, educational care and community support. Conditions that might previously have been grounds for abortion are now treatable, and attitudes towards people with disabilities have moved on greatly.
As has been mentioned, the Equality Act 2010 protects disabled people from being treated differently or discriminated against as a result of their disability. In light of all this medical, legal and cultural progress in our society, is it not now time to review the application of the legislation? If we do not consider a disabled person of inferior worth after birth, why do so before?
I want now to turn to a separate point. Many women feel steered, pushed or even rushed into having an abortion once it is determined that they might be carrying a disabled baby. Time and again I heard of that in a commission that I chaired in this House last year, which carried out a parliamentary inquiry into abortion on the grounds of disability. A copy has been placed in the Library. The commission’s committee comprised several Members of both Houses and all parties with different views on abortion but a common concern about the issue. We took oral and written evidence over several months from a total of 299 witnesses. Repeatedly, mothers told us that they had come, as one said,
“under huge pressure to have an abortion”,
because, as another said,
“this is the expectation of the health care professionals”.
Other mothers told us that they were not given support when making the decision, or they felt fearful that they would not be able to cope in future due to limited financial resources or community support in their locality. One said:
“My son (who is now eight years old) has Down’s syndrome. He was diagnosed in the womb at 35 weeks and I was actively encouraged to seek a termination by the doctor who gave me the diagnosis. I was given no support by my local hospital in my decision to keep my baby. I had to actively seek support elsewhere and I’m sure you will appreciate how difficult this was as I was heavily pregnant and in a vulnerable state.”
Parents may find that they are given only a leaflet on abortion, with plenty of advice on having an abortion, but no information specific to the condition that has been diagnosed, or information about what support they could expect if they kept the baby, or an alternative such as adoption. One said that
“choosing to keep the baby effectively meant I was on my own.”
Some mothers were made to feel irresponsible bringing a disabled child into the world on the basis that the child would be a drain on public resources. Many felt guilty about allowing their disabled child to be born. Recently we heard how distressed mothers were in Leeds general infirmary when they felt under pressure to abort babies with treatable heart defects. Was it ever Parliament’s intention that a treatable condition should come within the scope of ground E?
We also heard from a doctor, Mr Jayamohan, about particularly good practice such as counselling; expert support from trained clinicians; the provision of information about the child’s potential disability and treatment; the offer to speak to another family with a child with a similar condition; palliative care; and the opportunity to meet specialists as soon as possible after diagnosis, and so on, to enable parents to make their decision. One parent said:
“Guidelines and standards need to be set in place, which all hospitals need to meet, to ensure all families are given support on education of disabilities when faced with such a situation. To give a family a diagnosis of a disability and then to immediately follow that up with the advice that they can have a termination without any other information is simply not acceptable in a civilised society”.
Does the Minister agree that there is a need for better, more consistent, balanced information, trained counsellors, increased awareness of palliative care for newborns, and comprehensive information and support from the medical profession, whatever parents’ decision about the pregnancy? Would she consider developing best practice guidelines to encompass that?
We even heard of misdiagnoses. Parents told the commission about diagnoses that had proved to be incorrect. One said that
“we were advised my daughter be aborted up to birth due to the results of an antenatal test. The most serious result indicated Dandy Walker Malformation of the brain. In fact when scanned after birth there was no such malformation. Our daughter is now 6 years old and a happy normal child.”
Mr Jayamohan told the commission that of 32 post-mortems of late-stage terminations he had examined, two indicated that the diagnosis had been profoundly wrong. It is worth remembering that these are wanted babies, and parents who choose an abortion suffer grief from their loss. As one has said, it is a
“bereavement like any other person”.
Last year, more than half of ground E abortions were diagnosed by ultrasound alone, which I understand can carry a 10% to 15% rate of false positive diagnosis, meaning that of the 1,367 ground E abortions diagnosed by ultrasound in 2012, as many as 200 may have been falsely diagnosed. What steps are in place to help the Department assess the accuracy of prenatal diagnostics? Should not all be done that can be done to reduce the option of an abortion where it is not necessary or wanted? To that end, does the Minister agree that improvements need to be made in data collection, as there seem to be weaknesses, gaps and limitations in the collection of information on abortions that take place due to disability. One professor has described it as “very inaccurate”. We should be collating more information on the reasons for abortion beyond 24 weeks and analysing such data appropriately. We should consider a report to a coroner for all late-term abortions and carefully consider the need for post-mortems. There should be a national register for all congenital abnormalities, not just for Down’s syndrome. All this would help to improve future diagnosis and, I hope, lead to lower numbers of abortions.
Let me touch on the increasing concern about fetal pain. A new scientific consensus is emerging that babies in the womb can feel pain, even from 20 weeks—certainly, as seems incontrovertible, from about 26 weeks. Yet we permit disabled babies to be aborted at up to 40 weeks. One mother, when asked whether her child would feel pain, was told, “He’s going to feel it.” Is it because we believe that disabled babies do not feel pain, or because we do not care that they do, that we allow abortion at up to 40 weeks for them? During the passage of the Bill that became the Human Fertilisation and Embryology Act 2008, the age of viability was agreed at 24 weeks; it can of course be even younger. Why does this threshold not apply to the disabled?
The logical corollary is that society is saying that disabled babies who can survive outside the womb should not be allowed to do so. I cannot escape the conclusion that this is discriminatory. It simply cannot be right that, as a society that purports to respect disabled people, we act to prevent their very existence in this way. These are arguments open to anyone who values human life and deplores discrimination against disabled people.
My final request of the Minister is whether she would be good enough to take time after this debate to consider the 2013 parliamentary inquiry into abortion on the grounds of disability and respond to the recommendations within it, not all of which I have been able to touch on tonight for reasons of time.
I congratulate my hon. Friend Fiona Bruce on securing a debate on this subject, in which she has a long-standing interest. She made a very personal, moving and thoughtful speech to which we all listened intently. I thank other Members for their interventions. I know that there are views on this issue that are deeply and strongly held.
I am aware of the independent inquiry into abortion on the grounds of disability, which my hon. Friend chaired and which reported in 2013. Although I was not in post at that time, I have looked at the report. I have not had a chance to look at all the detail, but I have seen some of the recommendations. I have responses to one or two of the recommendations that she highlighted. As she knows, I will always go away and look at the points she has made, and those that I cannot cover tonight I will of course write or talk to her about.
Obviously, the House remains divided on the issue of abortion, which is a very personal matter. A number of concerns have recently been raised that we in the Department are working hard to address. On some issues, such as abortion on the grounds of gender alone, there is a strong parliamentary consensus. My hon. Friend has raised this with me in the House and in private, and we are working hard to deal with it. In other areas of abortion law, there are a range of views and differing interpretations.
It is crucial that everyone, regardless of their views on abortion, feels assured that the law on abortion is operating as Parliament intends. This is particularly important for clinicians directly involved in certifying and performing abortions, who need to know that they are operating within the law, and for women seeking an abortion, who need access to safe, legal, high-quality abortion services. I recently had discussions with the General Medical Council and the Royal College of Obstetricians and Gynaecologists, and we will be publishing strengthened guidance and revised procedures for the approval of independent sector places. That puts the debate into some context.
In 1990, Parliament decided that in some circumstances abortion should be available without time limit, including abortion where
“there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.”
I should clarify that abortions for fetal abnormality are listed as ground D in the Abortion Act 1967 but are set out differently in the regulations and certification forms, where they are listed as ground E. The grounds in the regulations are those most commonly referred to, but that is why there is sometimes a discrepancy with regard to grounds D and E.
In 2012, it was reported that 2,692 abortions had taken place under ground E of the regulations and that 160 of them took place at gestations beyond 24 weeks. It is important to note, as my hon. Friend has said, that Parliament did not define “serious handicap” in the Act. Indeed, it chose to leave it to the expert clinical judgment of the two doctors involved, who were required to form their own opinion about the seriousness of the handicap the child would suffer when born, taking into account the facts and circumstances of each individual case.
Some Members have expressed the view that the Act and, in particular, the provision that allows abortion on the grounds of disability should be revisited. Of course, by convention it is for parliamentarians, not the Government, to suggest amendments to the legislation, but that does not mean that the Government do not reflect carefully on any points made and there will be opportunities to provide clarification in some areas through guidelines.
Concerns have been expressed, not least this evening, that abortions are taking place for abnormalities that are rectifiable after birth. The Act requires doctors to assess the level of risk that the child would suffer from serious handicap if it were born. It should be noted that conditions such as cleft lip and palate, which have been mentioned this evening, can in some circumstances be an indicator of far more serious problems with the fetus.
The availability of remedial treatment that might alleviate suffering is obviously a factor that doctors will take into account in making their assessment. Guidance from RCOG states that the assessment of serious handicap should be based on a careful consideration of a list of factors, one of which is the probability of effective treatment either in utero or after birth. RCOG already says that that must be taken into account. However, the fact that remedial treatment may be available does not automatically mean that it will be successful, and the child may suffer from a serious handicap. Remedial treatment may be prolonged and painful.
I firmly believe, and I hope my hon. Friend will agree, that such decisions are exceptionally difficult ones for patients, women and parents to make, and that they are often finely balanced. Doctors and other professionals need to work hard to ensure that parents are properly supported and have all the information they need to come to a decision. I think we all share my hon. Friend’s concern that some people have reported feeling rushed and that they have not been given proper information. Ultimately, such decisions should be taken on a case-by-case basis and always according to the Act.
Will the Minister confirm that she will look at the production of best practice guidelines, because there is a clear indication that practice differs across the piece? If she agrees that we should give every mother and father in this situation the best possible opportunity to make the right decision, appropriate guidelines, which do not appear to exist in a functional format at present, would be the best approach.
I will certainly reflect on that point. RCOG has published best practice guidelines and I am sure it would be concerned to hear that my hon. Friend feels they are being inconsistently applied. I will give her some information from the guidelines. I have regular conversations with RCOG representatives and will raise her point with them. There is no absence of guidance, but she is clearly concerned that it might be being inconsistently applied.
RCOG has published guidance for its members on terminations for fetal abnormality. It notes that palliative and other care must be made available to women who decide to continue with their pregnancy. The guidance also makes clear to women and their partners that they should receive appropriate information and support from a properly trained, multidisciplinary team who must adopt a supportive and non-judgmental approach, regardless of whether the decision is to terminate or to continue the pregnancy. Support for parents faced with a similar diagnosis is available through the charity Antenatal Results and Choices.
The RCOG guidance also states that women and their partners must be fully supported before screening for fetal abnormality and during any decision that they may need to make about termination, as well as in continuing the pregnancy following a screening and during any aftercare. That should include referral to other professional experts, including palliative experts, as I have mentioned, and referral for counselling, where it can be part of a co-ordinated package of care. I will of course put my hon. Friend’s concerns about that not being consistently applied to RCOG, which I am sure will want to consider that matter. However, as I have said, RCOG has looked to address the issues, and I know that it is aware of her commission of inquiry and its report.
My hon. Friend mentioned adoption. That is a matter for the Department for Education, but I will of course draw the concerns she has raised in this debate to its attention.
With regard to information, the RCOG guidance does not make specific reference to the element of the life ahead that the child might have, but that is a matter for RCOG and other professional and training bodies, such as Health Education England, to take forward in their training procedures. Again, I undertake to bring that point to their attention.
On my hon. Friend’s concerns about a discrepancy between the numbers, I know that the independent inquiry recommended that funding should be made available to ensure that there are independent congenital anomaly registers covering all congenital anomalies across the whole country. She made another point about inconsistency. I can confirm that work is under way to support the increased coverage of congenital anomaly registers across the whole of England. That work is led by Public Health England. I have regular meetings with Public Health England, and I will draw to its attention Parliament’s interest in this matter. I undertake to update her on the progress of that work.
My hon. Friend made several other points. If she will excuse me, I will come back to her about fetal pain. RCOG has looked at and written about fetal pain in some detail, and has offered guidance about it. I will revert to her on that, as well as on some of the other matters that she raised about which I cannot now comment in any detail.
I thank my hon. Friend for her very thoughtful speech, for drawing the attention of the whole House to this issue and for how she expressed the potential that people have in their lives. I think that the whole House was thrilled to hear the story she told about her own family, and to hear about the great success that her son has enjoyed. I congratulate her on securing this debate, and on the tone in which she always conducts such difficult and sensitive debates. I will return to her with more detail when I have given her points further consideration.
Question put and agreed to.