Nurses and Midwives: Fees

Fiona Bruce Excerpts

Monday 23rd March 2015 Westminster Hall

[Fiona Bruce (Congleton) (Con)]

It is a pleasure to serve under your chairmanship, Mr Havard. I thank the hon. Member for Blaydon (Mr Anderson) for bringing forward the debate, although I do not agree with everything he said. With particular reference to the concerns he expressed on NMC registration fees, I will relay to Members and the Minister the experience of a constituent in Congleton whom I have recently had to assist.

My constituent is a registered general nurse. She qualified in 1987 and has practised as an RGN for 27 years. Sadly, the NMC recently nearly barred her from practising for a period, through no fault of her own. My constituent paid her £100 NMC re-registration fee by automatic bank transfer. The fee was debited from her account in October last year and she heard nothing more about it. She assumed that her re-registration had taken place automatically.

By chance, four months later, at the very beginning of February, my constituent was checking the NMC register regarding a colleague, and she decided to put in her own details. The system had no record for her. She contacted the NMC four times in two days, as she was very concerned. Eventually, she received a response. To her consternation, she was told that her registration had lapsed. She was informed that a form had been sent to her home, but had apparently been returned marked with “No longer resident at this address”, even though she had lived in the same house for four years and continued to receive other correspondence from the NMC throughout the period between October and February. Without contacting her or her employer, or reimbursing her money, the NMC had cut off her registration.

My constituent e-mailed me at the beginning of February, as she was extremely concerned. She said:

“I was then informed I would have to re-register”—

effectively, she had to apply for readmission—

“and could not work as I am no longer registered as a nurse and that sending the initial letters back could take up to 10 days and that I would also have to do a PREP audit which could take a considerable number of weeks to process. I do not have an issue with PREP as I do keep myself updated”.

She told me that last year she not only completed the 35 hours of continuing professional development that she should have done, but that she actually did around 100 hours of CPD. We are talking about a responsible member of her profession. Her issue was

“the length of time I will not be working because of the NMC incompetency. I have never received the renewal for registration form…I have received numerous letters from different departments at the NMC during the periods of October and up until last week”.

That was when she contacted me. Of even more concern is that she was also informed that

“the company I work for could request my wages back from October as I have not been registered or that they could discipline me. This situation is not my doing. I feel the NMC must have sent letters to the wrong address…why would I not receive some and receive others...I feel totally let down by a board that I have continually adhered to since 1987 without any blot on my career as both a Nurse and Midwife and now find myself in this diabolical situation which is not my doing.”

In fact, while my constituent was rather concerned, she continued to work. She needed to work, of course, and sought to correct the NMC’s error by reapplying. She was told that she would have to make a readmission application at the increased fee of £120, which she did. It was only after a number of letters from me and e-mails and calls from my constituent that just last week the NMC confirmed her readmission. She should have had her re-registration confirmed and backdated, but what she has had is an e-mail from the NMC that states:

“I have reviewed your readmission application, and I can now confirm that your readmission process is complete. As of today you are effective on the register with an expiry date of 31 March 2016.”

My constituent has been practising under this pressure for a considerable period. She was readmitted more than a month after she realised the situation and contacted me. She is extremely concerned, and so am I. In my constituent’s experience, the registration system has clearly lacked what I consider to be basic efficiency. It has fallen short of taking a reasonable approach to her. How can the NMC see fit to increase its registration fees in just two years from £76 to £120? Before it considers another increase, it should put its own house in order in respect of its relations with its members.

Human Fertilisation and Embryology

Fiona Bruce Excerpts

Tuesday 3rd February 2015 Commons Chamber

[Jane Ellison]

We have made it clear that the removal of the faulty mitochondria will be passed on to the next generation. That is exactly what we have been describing, but I do not accept my hon. Friend’s description of it as genetic modification. It has to be said that there is no universally agreed definition of genetic modification, but for the purposes of these regulations, we have used a working definition and it involves not altering the nuclear DNA.

[Fiona Bruce (Congleton) (Con)]

rose—

[Jane Ellison]

I know my hon. Friend is going to make her own contribution. If she will forgive me, I want to outline for the benefit of Members less familiar with the regulations their detailed content.

Turning to that detail, the regulations are made under the powers in the Human Fertilisation and Embryology Act 1990. They were added to in 2008 to permit mitochondrial donation to prevent the transmission of serious mitochondrial disease, anticipating the advancement of science to this point. Regulations 3 to 5 set out the circumstances for mitochondrial donation techniques using eggs; regulations 6 to 8 set out the circumstances for mitochondrial donation using embryos. They would allow the use of the two techniques that have been subjected to extensive UK-wide review and consultation: maternal spindle transfer and pro-nuclear transfer.

Regulations 11 to 15 and 19 set out the information that can be provided about a mitochondrial donor to any child born from the donation and information to that donor. Regulations 16 and 17 set out special provisions around consent that were identified through the public consultation process. These regulations apply UK-wide, and the devolved Administrations have been kept informed of development and progress.

[Fiona Bruce]

Does the Minister consider that the Government’s own regulator, the HFEA, was wrong to state, in a consultation document that “PNT involves genetically modifying a human embryo”?

[Jane Ellison]

I shall deal shortly with the regulatory regime that the HFEA would introduce. However, that and many other points have already been examined in great detail and responded to in great detail in parliamentary answers, to which I refer my hon. Friend.

--- Later in debate ---

[Fiona Bruce (Congleton) (Con)]

I want to speak against the Government motion, and I draw the House’s attention to my alternative motion in part 2 of the Order Paper—page 54—although it is not votable.

Human mitochondrial disease is a dreadful condition and, as a caring society, we must do all we can to address it, and do so as sensitively as we can for those families affected by it. As a caring society, however, we must also do so in an ethical manner and with proper regard for safety. I believe that the regulations we are considering today fail on both counts—ethics and safety—and that they are inextricably interlinked.

Let me be straightforward: I do oppose these proposals in principle. However, that should not prevent my concerns regarding their safety from being given a fair hearing. One of the two procedures that we are being asked to sanction today—pro-nuclear transfer—involves the deliberate creation and destruction of at least two human embryos, and in practice probably more, to create a third embryo, which it is hoped will be free of human mitochondrial disease. Are we happy to sacrifice two early human lives to make a third life?

[Sir Paul Beresford (Mole Valley) (Con)]

I question my hon. Friend’s definition of “embryo”. We are talking about two ova being used to create one embryo.

[Fiona Bruce]

Let me put it this way. Some may take the view that at such an early stage of human life, it is acceptable deliberately to create human embryos to then destroy them. However, the truth is that once upon a time I was an embryo and so was every other Member in this Chamber.

This debate is about the principle of genetically altering—indeed, genetically creating—a human being, and no matter how well meaning the motives, and my heart goes out to the families with mitochondrial disease, this technique will not cure that disease. That answers the question asked in the intervention on the hon. Member for Liverpool, Wavertree (Luciana Berger), the shadow Minister. This technique will not cure that disease.

[David T. C. Davies (Monmouth) (Con)]

I am completely undecided on this issue. Can my hon. Friend tell me whether it is the case that any woman taking the pill could arguably be destroying an embryo? If it is the case, what is the difference morally between using this technology and using the pill?

[Fiona Bruce]

What we are talking about is a particular process, which we know—with certainty—will destroy embryos. That is what I am addressing. As I say, this technique will involve the permanent alteration of the human genetic code. The Nuffield Council on Bioethics, which was cited by the shadow Minister in support of her arguments, says that these techniques are

“a form of germline gene therapy.”

This alteration will be passed down generations. The implications of this simply cannot be predicted. However, one thing is for sure: as someone has said, once this alteration has taken place and once the genie is out of the bottle, and once these procedures that we are being asked to authorise today go ahead, there will be no going back for society, and certainly not for the individuals concerned.

[Dr McCrea]

Does the hon. Lady find it strange that while the shadow Minister was telling the House that we should support these regulations, she had no answer to the direct question she was asked by the right hon. Member for Chesham and Amersham (Mrs Gillan), and that all she could say was that she hoped the Minister would clear the matter up?

[Fiona Bruce]

I was indeed surprised, but in a sense that is why those who have made the case for much more parliamentary time and debate on this issue are quite right.

There will be no going back for society and certainly not for the individuals and children involved. My hon. Friend the Minister said that we have taken all rigorous steps before bringing this matter to the House, but it is profoundly concerning that the outstanding preclinical trials, as recommended by the HFEA panel, have still not been undertaken, written up and peer-reviewed. Will my hon. Friend confirm that, setting aside the completion of preclinical trials, there have been no clinical trials of these procedures, that there will be no clinical trials of them and that, in effect, if we pass the regulations the techniques will be applied to the creation of children without clinical trials? In other words, we will be approving uncontrolled experimentation—because there will be no controls—on children. In the absence of clinical trials, would that not effectively contravene EU regulations?

[Robert Flello]

There is a lot of muttering around the Chamber that there will be clinical trials, but there cannot be clinical trials because they would breach the EU directive.

[Fiona Bruce]

That is exactly the point I was about to make. As has been highlighted in a letter from 44 MEPs who have written from the European Parliament this week to the Secretary of State for Health, the EU directives—the European clinical trials directive 2001, which was confirmed by the 2014 directive in the same area—state:

“No gene therapy trials may be carried out which result in modifications to the subject’s germ line genetic identity.”

My hon. Friend the Minister indicated that in some way these particular procedures were excluded from these trials. That cannot be correct. The European clinical trials directive 2001 applies to clinical trials involving germ-line engineering. It applies to all clinical trials using medicine, and to these procedures. For the Department of Health to argue that it can move straight to using these procedures on children without clinical trials gives us, apart from anything else, one reason to vote against these regulations.

If anyone doubts that, Lord Brennan QC has given a legal opinion on these regulations, which is of central importance. He says:

“It is a well-established principle that EU law is to be interpreted…in light of the purpose, values, social and economic goals the provisions aim to achieve. Given that…both the Directive and the 2014 Regulation…ban any gene therapy trials that involve modification of the subject’s germ line identity, then it would clearly fall within their purposes and values to prevent their use in clinical practice of any procedure with that effect without investigation or trials first having taken place.”

I believe that this Government are at risk of infringement proceedings being brought against them if these proposals go ahead.

[Several hon. Members]

rose—

[Fiona Bruce]

The answer has to be that we—

[Mr Speaker]

Order. I think Members thought that the hon. Lady had concluded her speech, but she has not. Let us have a courteous hearing for everybody. I call Fiona Bruce.

[Fiona Bruce]

Thank you, Mr Speaker.

Once we approve this procedure, where will it lead? The answer has to be that we stop here and say, “This is a red line in our country, as in every other country in the world, that we will not cross.” This is the place for that to be said. As MPs, we are accountable to the people of this country.

The Government’s own consultation in July 2014 received 1,857 responses, of which 1,152 were opposed to the introduction of these techniques. That has been confirmed by ComRes polling last weekend, which showed that more than twice as many people are against these proposals as are in favour—41% of respondents, compared with 21%. A third public survey, being conducted today on The Daily Telegraph website, shows that as of this morning 68% of the public oppose these techniques in principle. Do their concerns not deserve respect from those of us present here?

The truth is that the Government have not waited for the conclusion of trials, as they should have done, so that this House could make a fully informed decision, and that is wrong. Whether one ultimately approves or disapproves of these proposals, the right procedure on such a profound issue is for the elected representatives of the people of this country to have full information before being rushed into a decision, as we would be today if we voted for these proposals.

--- Later in debate ---

[Frank Dobson]

No, I will not give way, because I do not want to take up more than my allocated six minutes.

The question arises: will it be safe and will it work? The answer is that no one can make any guarantees, but that is the nature of scientific development. The thing to remember is that mitochondrial disease is horrible and that there is no treatment for it. I remind people that the team at Newcastle university did not start off with this riskier novel approach. It has been studying and trying to come up with treatments for mitochondrial disease for the best part of 20 years, and is still doing so now. Some 90% of its work is trying to come up with a treatment. The best that it has managed to come up with after all these years is helping parents cope with the horrible symptoms before their children fade away and die. As has already been said, the team has decided that if it cannot come up with a treatment—and it is still trying—it would be better to prevent the disease arising in the first place because prevention is better than cure. That is why I hope the regulations will be passed and handed over to the HFEA. Members should realise that it is a credit to this country and to this House that the HFEA was established. We must find a middle way between the free-for-all, which a few nutters want, and the total ban, which some others want because they are opposed to embryo research on principle.

The system that has been established is well regulated through the HFEA. Despite all the predictions to the contrary, there has not been a single scandal in all the time that the HFEA has been in existence. There has been no sign of a slippery slope. These people with great reputations at Newcastle think the time is right to take risks and to risk their reputations—

[Fiona Bruce]

Will the right hon. Gentleman give way?

[Frank Dobson]

No, I shall not. Those people are taking risks, because if the treatment does not work, there will be those who will gloat—even, I am sad to say, Members in this Chamber. The parents are also willing to take the risks. Parents with children do not want this to happen again, and we have the opportunity to do something about it. The results are uncertain, but that is in the nature of both medicine and science. We cannot guarantee that it will work, but the people most involved in the matter and all the scientific advisory bodies in this country think that it will work, and we should take note of what they say.

--- Later in debate ---

[Fiona Bruce]

I want to pick up on the point the hon. Lady makes about mitochondria not affecting characteristics. The Government’s own consultation document acknowledged that diverse characteristics are associated with mitochondria, including learning disabilities, neurological problems and dementia, and that every person’s symptoms are different. Is there not an insurmountable contradiction in saying that this is just like changing a battery if on the one hand one is saying that the aim is to prevent damage to those characteristics, but on the other hand one is saying that the techniques will not affect them at all?

[Liz McInnes]

I did not say it was just like changing a battery. In fact, I try to avoid using that terminology. The hon. Lady mentions learning disabilities, but as I just said, the organs affected the most by mitochondrial disorders are organs that require a large amount of energy, such as the brain, so that comes as no surprise to me.

Allegations have been made that the techniques are not safe.

[Liz McInnes]

No, I will not, because I need to make progress and let other people speak.

Last night, it was my privilege to attend the debate on the safety and ethics of this technique and to hear Professor Doug Turnbull, who leads the research team at Newcastle university, talk about the 15 years of work done by his team and the extensive safety checks that have taken place during those years. In the Chinese case to which my hon. Friend the Member for Stoke-on-Trent South (Robert Flello) referred, the treatment was carried out by an American clinician on a single patient in China. The patient became pregnant with triplets, one of whom was aborted and the other two were born prematurely and died. Importantly, the clinician attributed the outcome entirely to multiple pregnancy and obstetric complications, not to the method of conception. I do not accept that that one case represents a proper clinical trial.

What we have to remember is that mitochondrial disease is a life-limiting debilitating disease, causing severe distress to parents and their affected children. We have here a technique with the ability to alleviate their suffering and to allow affected parents the chance to have a healthy child who is genetically related to them in all aspects apart from a tiny proportion of mitochondrial DNA. The spectre of designer babies can be dismissed. There is no possibility of using this technique to select certain characteristics. It will simply allow mitochondria to function normally and for the child to be free of mitochondrial disease.

[Fiona Bruce]

Will the hon. Lady give way?

[Liz McInnes]

I will not, no.

In safety, the UK has a robust regulatory framework. A vote in favour of the motion will not in itself open the way for mitochondrial donation to be used in clinics. It will simply enable the HFEA to consider each individual family’s request for treatment on a case-by-case basis, taking expert scientific and medical advice and licensing the procedure only if the evidence shows that that is appropriate.

I am lucky enough to have worked at the Royal Oldham hospital, where the first IVF baby, Louise Brown, was born. When IVF was first introduced, there was no certainty that it was completely safe. Only after the first babies were born using the technique could scientists be completely reassured that their detailed research had led to the birth of healthy babies, but to this day research continues on IVF, just as more research must be done on mitochondrial transfer. That is the nature of science: it is a continuous process; it does not stand still.

For families affected by mitochondrial disease, this research has given them new hope that they may at last have the chance to bear a healthy child of their own. Last night I heard from a woman who suffered from mitochondrial disease, which had also affected her mother. That young woman had taken a considered decision not to have her own children, for fear of passing on the condition. The opportunity to have this treatment presents her and many other women in that situation with new hope. The science is there to alleviate the suffering of affected families, and in my opinion it would be unethical to withhold this treatment. I urge the House to approve the regulations.

Contaminated Blood

Fiona Bruce Excerpts

Thursday 15th January 2015 Commons Chamber

[Fiona Bruce (Congleton) (Con)]

In supporting this motion, I congratulate my right hon. Friend the Member for North East Bedfordshire (Alistair Burt) on securing this important debate. I praise him and the all-party group on haemophilia and contaminated blood for leading their campaigns to ensure that those infected by contaminated blood in the 1970s and 1980s, and their families, receive the support and justice they deserve. It is justice for which they have waited far too long. We often hear in this House the statement, “Justice delayed is justice denied”, but it is rarely so apt as in this case.

Like many Members here today, I was first alerted to this terrible situation by a constituent. My constituent’s father had been jointly infected by hepatitis C and HIV via contaminated blood products. My constituent told me:

“My father lost his battle with these joint diseases on the 17 January 2000, after 19 years of suffering…His story is a long one with distressing details.”

I do not propose to go into those details, but I will say that it is a heartbreaking, twisted tragedy that my constituent’s father could go to hospital to receive treatment to help with haemophilia and yet it would be that very treatment that would kill him, having caused him 19 years of suffering. It is a tragedy for that man and for his whole family, one similarly suffered by nearly 5,000 people in 5,000 families, so many of them going to our own national health service hospitals to be treated but receiving what would turn out to be lethal injections.

If proper support and a proper inquiry had been provided in 2000, it would, even then, have been tragically too late for my constituent’s father. This Saturday will mark 15 years since he passed away, and here we are still—in 2015—with no proper inquiry, unsatisfactory support for survivors, unsatisfactory support for families, inadequate compensation provision and, not least, no apology. Not only is this tragedy heartbreaking, but it is a double tragedy and a double scandal. The first is that anyone—let alone 5,000 people—was infected through contaminated blood. The second is that decades later— 24 years after my constituent’s father was contaminated and 15 years after his death—we find that my constituent and his family, and so many others like them, still have received no satisfactory response or justice. That must change. It is nothing less than appalling that successive Governments have failed to address this issue: a situation caused by a failure in our NHS provision.

My constituent’s letter continued by saying that

“it is the survivors and the widows who most need help now, and those who have died need a voice. The largest tragedy of this is that unlike other countries, there has never been a public inquiry.”

As a member of the Select Committee on International Development, it is my privilege to travel the world, and wherever I go I hear people admiring the high standards of our country’s justice system, rule of law and provision of access to justice. This country is respected globally for those things, yet it is a terrible stain on our reputation, of which we should feel ashamed and embarrassed, that we have failed as a nation, by such a long way and over such a long time, to adhere to those high standards of justice expected by our constituents, and which they deserve.

What now needs to be done is clear, thanks to the work of my right hon. Friend the Member for North East Bedfordshire and the all-party group, who have identified the main priorities of those who suffered from these situations and their relatives. The priorities are reasonable, just, possible, necessary and, above all, urgent, because, as we have been reminded today, justice delayed is justice denied—indeed, it is no justice at all. Let us hope that today’s debate signals the beginning of the end of this terrible scandal. In closing, may I apologise for the fact that I may miss the wind-ups, because I am shortly hoping to speak in another debate?

NHS Specialised Services

Fiona Bruce Excerpts

Thursday 15th January 2015 Westminster Hall

[Fiona Bruce (Congleton) (Con)]

May I first add my most sincere congratulations to you, Sir David, on your recent elevation?

I will be brief. I pay tribute to the hon. Member for St Austell and Newquay (Stephen Gilbert) for securing this debate. Ahead of it, I have been contacted by an exceptional charity in my constituency, the Raynaud’s and Scleroderma Association, of which it is my privilege to have been patron for many years. That outstanding charity was founded and is based in Alsager in my constituency, and it is the only charity providing national support, research and help for people suffering from Raynaud’s and scleroderma—two debilitating conditions that affect the digits and the autoimmune system. The charity also supplies support to their carers.

I am glad to take the chance today to pay tribute to the work that the RSA does every day for people suffering from those debilitating conditions. Despite working from a tiny terraced house on limited resources, it has raised millions of pounds to fund national treatment and vital research. It has helped the country’s understanding of the conditions, as I have heard personally from clinicians and doctors. As a result, I believe that the RSA’s concerns about the proposals that we are discussing today demand a hearing.

The RSA’s work makes a huge difference to the lives of those affected by the conditions, especially those with Raynaud’s when their condition develops into scleroderma, which is rarer and more serious. The progress the association has made in research into and treatment of the conditions is outlined on its website. Its chief executive officer, Elizabeth Bevins, contacted me prior to the debate because she is concerned about the plans we are debating, which could reverse the progress that has been made over recent years on services for these rare conditions. I will quote from Elizabeth’s letter to me:

“Having followed the development of NHS England with interest since its launch…and having welcomed Specialised Services commissioning at national rather than local level as an important cornerstone of the plan to help eradicate any ‘postcode lottery’ issues, I am now concerned at the proposed changes on national commissioning for specialised services.”

She added that she shared the concerns of the Specialised Healthcare Alliance, which she thought had articulated the position well in the statement it released on the issue. That statement says:

“Specialised services are best planned on a national level–in the past patients experienced very different levels of access to specialised care.”

Elizabeth is concerned that NHS England’s plans to let local commissioners share responsibility for commissioning such complex services, thereby incentivising them to direct funding to local priorities, could result in a patchwork quilt of provision. An example is the prescription of the drug Bosentan for scleroderma. The drug can often help to prevent the formation of digital ulcers. The RSA is extremely concerned that access to that drug and others for the rare conditions to which I have referred should continue to be “equitable and consistent”.

These diseases are rare, so shared knowledge across clinicians nationwide is essential. Scleroderma affects only about 8,000 patients in the UK. The RSA has stated that

“treatment is best and most effectively made from a few specialist hospitals across the UK…who work with a patient’s local hospital to manage what can be killer diseases.”

I hope that, in continuing with the proposals, Ministers will take into account the concerns of the RSA.

A and E (Major Incidents)

Fiona Bruce Excerpts

Wednesday 7th January 2015 Commons Chamber

[Mr Hunt]

We will look at that very carefully. Of course, anything that can help to relieve pressure on A and E departments is our top priority at the moment.

[Fiona Bruce (Congleton) (Con)]

My constituent, Mr J. Hollinshead, rang Ashfields surgery, Alsager, for an appointment at 8.30 am on 2 January. He was given one for 10.30 am, when his doctor referred him for three tests to be done with the practice nurse at 11.30 am, then on to Leighton hospital for an X-ray, and he was home by 1.30 pm. His response: “How good is that?” Is not that a truer picture of the NHS under this Government than the negative messages coming out from Labour Members?

[Mr Hunt]

I agree that we need to recognise the successes of the NHS, and there are many of those successes. The reason we need to do that—I urge Labour Members to remember this—is that it is very important for the morale of people working in the NHS that we publicly recognise where they are being successful.

Health and Social Care (Safety and Quality) Bill

Fiona Bruce Excerpts

Friday 7th November 2014 Commons Chamber

[Fiona Bruce (Congleton) (Con)]

May I begin by congratulating my hon. Friend the Member for Stafford (Jeremy Lefroy) on his Bill, which, if implemented, has the potential to provide significant improvements right across this country to the treatment and care of patients requiring medical assistance? Indeed, the improvements proposed by the Bill would have an immediate and real impact.

The national health service is an institution of which the whole nation can be proud. It serves our society with outstanding professionalism and admirable compassion. However, as a few specific, terrible instances have shown, there is room for improvement.

I salute my hon. Friend’s tireless work to do everything possible to ensure that this country never again experiences tragedies of the type reported from Mid Staffordshire hospital. Indeed, my hon. Friend’s constituents have cause to be extraordinarily proud of him as their elected representative and of the thoughtful, tireless and effective work he has done on their behalf in response to the issues raised at Mid Staffordshire hospital. I do not believe that any other Member could have worked harder for their constituents in this connection. He has raised their concerns in this House countless times.

The Bill is another carefully considered and utterly compassionate response—so characteristic of my hon. Friend—to those events. It is a focused, effective and, above all, practical proposal. It has one overriding focus: patient care. It deserves to be fully supported in its passage through the House. Its proposals are specific, realistic and immediately applicable. It will bring about real changes in the lives of real people right across the country at their weakest and most vulnerable moments.

As I have said, particular situations hit the headlines. Although they were extreme, the House must remember that they are part of a wider national picture. We must use the lessons to inform future policy, and the Bill does just that. It is all about patients and their care, and about promoting consistency across the country so that all patients are cared for safely, and are seen to be cared for safely, to an accepted and understood standard. The NHS is an institution that the British people own, fund and use, and it is right for us to be concerned about public confidence in the quality and safety of the care it provides.

I understand the concerns of those who say that the NHS cannot be run on the basis of public opinion—I will speak about that when I come to clause 5—but that does not negate the fact that public confidence in the NHS is an essential concern, not an optional extra. Indeed, an NHS or local hospital that loses the confidence of the public will quickly cease to be able to serve effectively the community for which it is designed.

The first purpose of the Bill is to set in stone the priority of patient safety in NHS standards not just as a power but as a duty of the Care Quality Commission, as my hon. Friend has said. We have learned from the Francis report that patient safety is not an optional extra; it is essential and should be at the heart of good health care. The recognition of every single person’s dignity and value has characterised the proud history of the NHS and must always remain central to its practice, no matter what pressures it comes under on a wider scale.

The priority of safety in the work of the CQC will help to enshrine the dignity of individuals in a system that must inevitably focus on what is efficient in the wider structural picture. Putting safety first will ensure that it is not lost within bureaucracy and procedures. The nature of the NHS clearly means that health care professionals are always under all sorts of pressures to decide how they can most effectively allocate their resources of time, expertise and treatments.

Clause 1 will be a buttress to the rights and dignity of each and every individual within the larger picture. It will make sure that safety is one of the key non-negotiable factors that guide professionals and institutions as they make decisions. The clause acknowledges that there is no such thing as risk-free health care, and it allows for a certain margin when those providing the service cannot reasonably avoid risk. The responsibility that the clause will permanently place on health care professionals, institutions and those assessing the CQC should ensure that the recent tragedies in patient care are far less likely to happen in future. Ideally, no one in the House would want them to happen and to be reported again.

The second aim of the Bill relates to transparency and the integration of health care. A more integrated health care system must surely be a better system. It would promote shared expertise, shared learning and greater safeguards. The care provided for patients should reflect the fact that disconnected and fragmented health care is weak health care. These provisions will aid heath care professionals with regard to not just safety, but good practice across the board. I hope that it will simplify, rather than—as some fear—make more complex, the system of health care provision for patients. A consistent patient identifier and wider information sharing should create clearer channels for the integration of health and social care for individuals. This is the way of the future, particularly given the needs of our increasingly elderly population. I applaud my hon. Friend for those practical proposals.

As I have said, the NHS is a unique institution with a unique connection to the public. Public confidence is not an optional extra, but to achieve it requires transparency. I am sure that many health care professionals in the NHS will welcome greater transparency. The overwhelming majority of those who work in the NHS do an outstanding job, of which they—and we—can be proud.

The British Medical Association has certain concerns about the NHS number being used as a universal identifier, so I am pleased to highlight the fact that the Bill does not require any particular identifier to be used. The Bill seeks to promote the principle and merit of having an identifier, but which identifier is to be used can be left to the discretion of the Secretary of State, who I am sure will consult interested parties.

Provisions for sharing information in the Bill are also important. They will facilitate better health care treatment for every individual across all areas of their treatment, allow professionals to do a better job, and allow patients to know with confidence that those looking after them are fully informed about their care requirements before they provide treatment. Currently, patients cannot be sure that their medical and care history and priorities are being shared between professionals responsible for their care. My hon. Friend has cited cases where that has caused problems, which is no doubt typical of many.

Care must be taken to ensure that information is shared in a responsible way that upholds the privacy of the individual—that is critical. Questions of who information is shared with and how consent is assumed or obtained from patients are important, and there will be the opportunity to discuss such matters further in Committee. As the Bill rightly points out, patient data should not be shared where that is not appropriate, or in an unsafe manner—for example, where a person’s medical record contains confidential information about another person. Critically, the sharing of information must always be in the best interests of that person’s care and treatment. The Bill would not require the sharing of identifiable information for purposes other than direct care. As Dame Fiona Caldicott said:

“For too long, people have hidden behind the obscurity of the Data Protection Act or alleged rules of information governance in order to avoid taking decisions that benefit the patient. Personal data must be protected lawfully, but common sense and compassion must prevail.”

The third and final aim of the Bill is to ensure that the various health care regulators, including the Professional Standards Authority when making decisions on cases of conduct or misconduct, have consistent overall objectives in mind: the maintenance of public safety, public confidence in the relevant profession, and proper professional standards of conduct on the part of health care professionals. The proposals have not sprung up in a vacuum; they are consistent with recommendations in the Law Commission’s report, “Regulation of Health and Social Care Professionals”. It noted with concern the inconsistencies in the way different professional regulators assess individual fitness to practise. The relevant section of the Bill, recommended by experts, should ensure fewer examples of poor practice, and that it is properly addressed. Everyone—practitioners and regulators —should know the primary principles by which professional performance in the health care system is to be judged.

I understand that some professionals, and the BMA, are concerned that the link to public confidence could lead to an inappropriate link between volatile public opinion and the decision of regulators. Those are reasoned concerns but they underestimate the capacity of regulators to make appropriately sound judgments against set benchmarks. The legal position already requires attention to be paid to public confidence. The Law Commission’s report stated that

“the concern is that in cases of clinical misconduct or deficient professional performance they—”

that is the regulators, and for the benefit of the House I will elaborate a little on what “the regulators” means, because it is an extensive group of organisations—

“are more likely to look at whether the instances of clinical misconduct or performance are remediable than to fully consider all of the factors, including public confidence in the profession.”

The Bill addresses that concern.

Concerns that this will lead to inappropriate links between regulation and public opinion, perhaps especially as it relates to so-called scare stories in the press, should prove unfounded. Far from it: the Bill should encourage greater clarity and rigour in the grave task of regulators in assessing professional standards and promoting best practice. The impact of the Bill in this regard should not be underestimated. The extensive list of regulators—the bodies that regulate health and care professionals in the UK and will be affected positively by the Bill—includes: the General Chiropractic Council, the General Dental Council, the General Medical Council, the General Optical Council, the General Osteopathic Council, the Health and Care Professions Council, the Nursing and Midwifery Council and the General Pharmaceutical Council.

[Jeremy Lefroy]

I am most grateful to my hon. Friend for taking on the role of enunciating all the regulatory bodies. Does she agree that we would be wrong to downplay the great common sense of the British people when talking about public confidence? Public confidence in health care professionals, by any objective reasonable measure, is at a very high level and we do not just need to look at press headlines for that. Does she agree that, when it comes down to it, the British people have a huge amount of common sense and the profession should not be afraid of public opinion? It is very much on its side.

[Fiona Bruce]

I entirely agree. In saying what I have said, I in no way want to denigrate my hon. Friend’s intervention. I absolutely agree with him.

In closing, let me repeat my support for this profound and potentially far-reaching Bill. If passed, it would influence the life of every citizen in this country. Let me repeat my support for the excellent work my hon. Friend has done in bringing it to the House, and in working to drive up standards in the NHS, both locally in his constituency and nationally, and protect people across the country from a repetition of the sad and tragic events documented at Mid Staffordshire. The Bill will strengthen relationships between patients and health care professionals, and between the NHS and the public in general. It will help to lift confidence in the NHS even further. Most of all, it will help to ensure that every person who relies on the NHS in their most vulnerable moments will be safer wherever they live and whatever their condition. For that reason, I commend my hon. Friend’s Bill to the House.

Oral Answers to Questions

Fiona Bruce Excerpts

Tuesday 21st October 2014 Commons Chamber

[Mr Speaker]

Order. We have overrun, principally because of long questions and answers earlier, but I am keen to accommodate a couple more colleagues.

[Fiona Bruce (Congleton) (Con)]

Mitochondrial technique was last tried on humans in 2003 by John Zhang, resulting, I understand, in two still births and an abortion. Last week, one of the members of an expert panel of the Human Fertilisation and Embryology Authority said he had only just become aware of Zhang’s study. What action will Ministers take to ensure that this worrying study is properly examined before any steps are taken to bring this issue before the House?

[Jane Ellison]

My hon. Friend takes a great interest in this matter and led the Back-Bench business debate on 1 September. I will certainly ask the HFEA and the expert panel to look at the study to which she refers, but I can provide the reassurance I have given before—that the wide body of expertise and information out there about mitochondrial disease is regularly reviewed over a long period of time.

Community Hospitals

Fiona Bruce Excerpts

Wednesday 3rd September 2014 Westminster Hall

[Fiona Bruce (Congleton) (Con)]

I am pleased to have the opportunity to speak in this important debate. I congratulate my hon. Friend the Member for Dover (Charlie Elphicke) on securing it, and I entirely concur with the major premise of his speech, as well as that of many of my colleagues’ speeches, that community hospitals should be further developed to promote additional services.

One such excellent community hospital is the Congleton War Memorial hospital in my constituency. Given the high standards it has provided for its local patients, it is well placed to extend its services. The recent patient-led assessment of the care environment rated Congleton War Memorial highly, with no less than 93%. Founded in 1924 by public subscription, it was a memorial to all those who had given their lives in the first world war. The hospital has served the community of Congleton ever since, and it is fitting that I should be able to stand up and praise that excellent local hospital in the centenary year of the start of that war.

I will give a little background. Built in 1924, the hospital was paid for by local people and opened by the King as a memorial to those 243 men from the town who gave their lives in the first world war. When the King opened the hospital, he said:

“The hospital will always be a reminder to generations to come of the prudent and generous instincts of the townspeople of Congleton”.

Indeed, it has been, and still is.

Until the inauguration of the health service in 1948, the hospital was maintained locally, first by an industrial hospital fund, to which every worker in the borough contributed one penny a week, deducted from their pay packets. That is why the hospital remains so close to many people’s hearts, in particular the many elderly people in my constituency. Additionally, it was supported by the proceeds of an annual hospital carnival, private subscriptions and bequests, the proceeds of special efforts, and donations from local fundraising, which continues today.

Its current services range from a minor injuries unit to physiotherapy and phlebotomy. It offers a personal and local service that a larger city or general hospital simply cannot match. It is a high-class facility on the doorstep of the people of Congleton, meaning that those who are less mobile due to age, infirmity or lack of transport can easily access health care facilities without needing to ride in a bus or taxi to the nearest larger hospital, which is in neighbouring Macclesfield.

Although a community hospital, it has a host of facilities and services for out-patients and in-patients. It provides a wide range of local health care for residents and has a specialist intermediate care unit. It gives respite care for people who no longer need the facilities of the larger hospitals in the region, such as Macclesfield district general hospital, so people can recover in a more homely and relaxed environment that is closer to home. That is very much appreciated, particularly by those who have more acute and severe needs. Such a facility is also a boon for visiting families and provides a halfway step between hospital and home. As I have said, the hospital is particularly valued by older constituents.

I want to reassure my constituents that I know of no current plans to reduce or close the services at Congleton War Memorial hospital. Indeed, my purpose in speaking today is to request that consideration be given to extending them. I assure hon. Members that my constituents would rise up in revolt should there ever be a hint of closure or reduction in services at the hospital—and it would not be the first time. In 1962, after a suggestion that the hospital be closed, there was a mass meeting at the town hall, with an overflow of some 2,000 residents. The meeting was presided over by the mayor and it was unanimously resolved to oppose every means by which closure could be attained. A petition was organised and got 24,000 signatures. The plans were well and truly dropped and the hospital has flourished ever since.

Members of my staff extol the importance of the hospital for the people of Congleton and call it an “invaluable asset”. They say that waiting times are short, even for minor injuries—half an hour, if someone is unlucky, which is far better than at an A and E at many larger hospitals. The service is treasured by the people of Congleton, who use it frequently and see its special services as something that should be available as a matter of course. Congleton residents rely on it for its family-friendly outlook. As I have said, its minor injuries unit helps to avoid long waits at A and E and serves the local community; it also potentially reduces waiting times at larger hospitals and takes a load off them by treating less acute injuries.

The value of Congleton War Memorial hospital cannot be overstated. It is beloved by local people and provides a level of personal service that I myself have witnessed when I have had the pleasure of meeting and spending time with the staff there, in fresh and attractive facilities that are maintained to a very high standard.

I hope the Minister will join me in extolling the virtues of important facilities such as those at Congleton War Memorial hospital, and perhaps even visit for himself one day to see, in Congleton, what a model community hospital looks like. It is ideally placed for the extension of the excellent facilities that it provides.

Mitochondrial Replacement (Public Safety)

Fiona Bruce Excerpts

Monday 1st September 2014 Commons Chamber

[Fiona Bruce (Congleton) (Con)]

I beg to move,

That this House takes note of the Human Fertilisation and Embryology Authority’s most recent scientific review into the safety and efficacy of mitochondrial replacement techniques which highlights concerns for subsequent generations of children born through maternal spindle transfer and pronuclear transfer; welcomes the recent comments of scientists including Professor Lord Winston that, prior to the introduction of such techniques, more research ought to be undertaken and a full assessment conducted of the potential risk to children born as a result; and calls upon the Government, in light of these public safety concerns, to delay bringing forward regulations on mitochondrial replacement.

I am pleased to move this motion and to have gained support from so many Members from across the House, and I thank the Backbench Business Committee for allowing us the time to debate it.

It is in our interest as a nation to be at the cutting edge of technological progress. However, in striving for such progress, we cannot afford to cut corners when it comes to public safety. Surely this can nowhere be more true than in relation to the proposal that pronuclear transfer or PNT and maternal spindle transfer or MST be permitted in an attempt to create children who do not inherit mitochondrial disease. In 2011, 2013 and 2014, the Human Fertilisation and Embryology Authority or HFEA assessed the safety of the procedures, and on every occasion it reported that further research was required before the public could be satisfactorily reassured regarding them. It described experiments as “critical”, with some not even having started in June 2014. It stated that

“there are still experiments that need to be completed before clinical treatment should be offered. The panel considers that some of these experiments are critical and others desirable.”

Even more concerning, it stated, was that

“the process cannot be expected to guarantee safety or efficacy when applied for the first time in a clinic.”

In other words, to allow these procedures at present would be tantamount to experimentation.

[Dr Julian Huppert (Cambridge) (LD)]

Does the hon. Lady accept that when anything is tried on a human for the first time, we cannot be absolutely certain what will happen? Is she really saying that we should not do anything—no cancer treatment, nothing—until we are absolutely 100% certain that there are no side effects? Does she not accept that we are trying to treat hideous diseases?

[Fiona Bruce]

I accept that in no case can one be 100% sure that a technique will be safe. However, we are very far from that in this case. This is a case of genetic engineering; it is the alteration of a potential human being—the removal of certain genes and their replacement with others, to create children. Surely, in such cases, we should be very careful over safety before we proceed.

[Mr David Burrowes (Enfield, Southgate) (Con)]

I am grateful to my hon. Friend for securing this debate. It is not just her who has concerns about safety. When legislation was scrutinised in 2008, the right hon. Member for Bristol South (Dame Dawn Primarolo), now Madam Deputy Speaker, said as the responsible Minister that the safety of such techniques needed to be established before we could proceed.

[Fiona Bruce]

Absolutely. I thank my hon. Friend for his intervention.

The HFEA has repeatedly told the Government that further research is required before we can proceed.

[Andrew Miller (Ellesmere Port and Neston) (Lab)]

rose—

[Mr Deputy Speaker (Mr Lindsay Hoyle)]

Order. Nineteen Members wish to speak and other Members are trying to catch my eye to intervene. It is an important debate and we need to allow the allotted speakers in, so Members should think very hard before trying to intervene.

[Fiona Bruce]

Thank you, Mr Deputy Speaker.

Parliament should be allowed to deliberate on and debate this issue at length, but that might not happen. I understand that the Government propose to lay regulations permitting PNT and MST before the end of this year. Sir John Tooke, president of the Academy of Medical Sciences has said:

“Introducing regulations now will ensure that there is no avoidable delay in these treatments reaching affected families once there is sufficient evidence of safety and efficacy.”

In other words, Parliament should vote blind and sign off legislation permitting these procedures before the recommended experiments—some of them critical, regarding safety—have been completed.

[Sir William Cash (Stone) (Con)]

As a veteran of these debates, going right back to 1985, I wish to commend my hon. Friend enormously for what she is saying and doing. There has been a history of manipulation, involving packing of committees, for example, over an extremely long period. My hon. Friend is right to take the line she is taking: it is not just about health and safety, but about the whole question of the ethical and moral values that lie behind attempts to manipulate genes. We all want to help people; the question is whether this is the right way to do it. I emphatically believe that it is not.

[Fiona Bruce]

I thank my hon. Friend for that intervention.

Even more worrying than the quotes I have cited from the HFEA is the fact that many scientists, national and international, have gone further in publicly stating that these procedures should not be authorised at all—and not necessarily because they are against them in principle, as some are not against them. Stuart A. Newman, professor of cell biology and anatomy at New York medical college has described these proposals as “inherently unsafe”. Paul Knoepfler, an associate professor in the department of cell biology at the UC Davis school of medicine recently wrote that a process of this kind

“could trigger all kinds of devastating problems that…might not manifest until you try to make a human being out of it. Then it’s too late.”

[Tim Loughton (East Worthing and Shoreham) (Con)]

I am grateful to my hon. Friend and respect what she is saying. Safety is paramount, but for every year we delay bringing this science and technology forward, 6,500 children will pick up these horrible inherited diseases, and many of them will die. At what stage would my hon. Friend say that the risks of mitochondrial donation become proportionate to the severity of mitochondrial disease to which many of our constituents are subjected?

[Fiona Bruce]

I can respond in this way. In the general science, concerns have been referred to. A mismatch between nuclear and the mitochondrial DNA could cause severe health problems in children conceived with this technique: problems such as infertility, reduced growth, impaired learning, faster ageing and early death. Are those not sufficiently serious for us to be extremely concerned?

[Guy Opperman (Hexham) (Con)]

I support the work to combat this terrible disease, some of which is being pioneered by my local university, Newcastle, and I will be urging the Government to proceed with the trials, but the question is this. The new IVF technique that has been pioneered at Newcastle has proved to be successful in the laboratory, but the current law prevents it from being tested in a clinical trial or used in clinical practice. That is what we need to change. Without those clinical trials, we cannot progress and deal with this terrible disease.

[Fiona Bruce]

That is very interesting but the point I am making is that at the moment such clinical trials would involve children. Two peer-reviewed articles in Nature have suggested that mitochondrial transfer is inherently risky, one of them citing a figure of 52% of embryos created through MST having chromosomal abnormalities.

[Jacob Rees-Mogg (North East Somerset) (Con)]

There has been reference to the curing of disease but is that not a misleading way of putting it? What is happening is the creation of different people from those who would have been born suffering from the disease. Therefore, this is not curing an existing condition. It is stopping someone being born who would otherwise have been born.

[Fiona Bruce]

That is absolutely right. This technique will not provide a cure of mitochondrial disorders at all. Indeed, concern has been expressed that even where a female child born through the process appears not to suffer from the disease she could still be a carrier.

[Several hon. Members]

rose—

[Fiona Bruce]

I am beginning to think there may be a point at which I must not take any more interventions, simply because I know how many other Members wish to speak. I will not give way from now on. I would be delighted to, but I am aware that almost 20 Members have asked to speak in the debate.

Professor Lord Winston, who supports the regulations in principle, has recently expressed concerns over public safety:

“I don’t believe there has been enough work done to make sure mitochondrial replacement is truly safe. There probably needs to be a great deal more research in as many animal models as possible before it’s done.”

[Huw Irranca-Davies (Ogmore) (Lab)]

Will the hon. Lady give way?

[Fiona Bruce]

I will not give way again, as I said. Mr Deputy Speaker has asked me to limit my time quite severely in order that many other Members may contribute to this important debate.

It is vital that, taking advice from scientists, the decision about whether to proceed down this road is made by this House and is seen to be made by the public. It would be wrong for Parliament pre-emptively to sign off the legislation even if there were a provision in the regulations saying that the Government would not move to implementation until such time as the HFEA said it was content with the outcome of the pre-clinical report. That would be to outsource the final decision to technocrats, possibly behind closed doors, rather than in the transparent environment of this Chamber, in full public view. Parliament cannot be seen to provide pre-emptive mandates in relation to a subject on which there are such significant public safety concerns. We need scientists and experts to conduct the research but we must make the final decision.

I realise that you would like me to conclude, Mr Deputy Speaker. I will now do so with regret, because I would have liked to say a great deal more, particularly regarding the public concerns relating to the proposals. According to a ComRes poll, a limited number—only 18%—of the public are in favour of the proposals.

[Several hon. Members]

rose—

--- Later in debate ---

[Fiona Bruce]

I thank all hon. Members who have contributed to this debate. The number who have contributed and the serious intent and concerns expressed highlight the grave concern that Members feel about this issue, which I believe reflects public concern. That is why it is so important that the final decision on this issue is brought back to the House. Full debate and consideration should be available to us after the critical research recommended by the Human Fertilisation and Embryology Authority has been conducted, published and peer reviewed.

My hon. Friend the Member for South Derbyshire (Heather Wheeler) said that we should listen to the science, and that is precisely my point. It is said that the Government intend to lay regulations this autumn, before the pre-clinical research recommended by the HFEA in its three reports has been concluded, written up and assessed in peer reviewed journals. I simply say that it cannot be right to ask the House to make such a decision before the tests have been concluded. As my hon. Friend the Member for Enfield, Southgate (Mr Burrowes) said, there has always been an understanding that we must proceed only when the safety of these issues has been properly assessed.

As a mother, I know that no mother would want to conceive a child with mitochondrial disease, but neither would they want to conceive a child with potential genetic abnormalities because adequate safety tests on maternal spindle transfer and pro-nuclear transfer were not carried out.

Question put and agreed to.

Resolved,

That this House takes note of the Human Fertilisation and Embryology Authority’s most recent scientific review into the safety and efficacy of mitochondrial replacement techniques which highlights concerns for subsequent generations of children born through maternal spindle transfer and pronuclear transfer; welcomes the recent comments of scientists including Professor Lord Winston that, prior to the introduction of such techniques, more research ought to be undertaken and a full assessment conducted of the potential risk to children born as a result; and calls upon the Government, in light of these public safety concerns, to delay bringing forward regulations on mitochondrial replacement.

[Dr Sarah Wollaston (Totnes) (Con)]

On a point of order, Madam Deputy Speaker. Is it in order to ask whether Professor Lord Winston was consulted before his name was added to the motion on the Order Paper?

Abortion (Disability)

Fiona Bruce Excerpts

Wednesday 9th April 2014 Commons Chamber

[Fiona Bruce (Congleton) (Con)]

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.

[Andrew Selous (South West Bedfordshire) (Con)]

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?

[Fiona Bruce]

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.

[Jim Shannon (Strangford) (DUP)]

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?

[Fiona Bruce]

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.

[Mr Nigel Dodds (Belfast North) (DUP)]

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.

[Fiona Bruce]

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.

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

I congratulate my hon. Friend the Member for Congleton (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.

[Fiona Bruce]

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.

[Jane Ellison]

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 it 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.