(7 years, 1 month ago)
Lords ChamberMy Lords, I intend to focus my remarks on an important subject that transcends the policy areas covered by today’s debate: disability equality. Some noble Lords may have heard that I have a new status since last we met: I have been abolished. For noble Lords who missed the piece in last weekend’s Sunday Times, I am referring to the fact that having applied in response to an advert specifically for the position of disability commissioner at the Equality and Human Rights Commission, I was told by its chair, 36 hours before my first board meeting, that the board had decided to abolish the role. In his words, the role was “redundant”. I was then pressured by the chair to accept that the disability commissioner was no more and that I would therefore not chair the commission’s important Disability Advisory Committee. In other words, as the Sunday Times put it, my role as champion of the nation’s 11 million disabled people had been abolished.
I reject what I regard as a retrograde and deeply regrettable decision. Perhaps I can share with the House why I am so concerned. The excellent report produced recently by the ad hoc Select Committee on the Equality Act 2010 and Disability states that there had been,
“a loss of focus on disability discrimination”,
and furthermore that,
“combining disability with the other protected characteristics in one Act”—
the Equality Act—
“did not in practice benefit disabled people”.
Nowhere in the report is there the slightest suggestion that one way to reassure disabled people would be to reduce the focus further, which is exactly what the abolition of the disability commissioner post does.
I am also concerned about the commission’s interpretation of equality. As noble Lords may recall, I argued in the last Session that disability equality before birth is fundamental, because unless a disabled human being’s equal right to exist is respected, all other rights are academic. One needs to be born to exercise them. Otherwise, the situation whereby after birth I am somehow good enough to be in your Lordships’ House, but before birth I am only good enough for the incinerator because of my disability, means that discrimination on the grounds of disability is perpetuated.
I have been told by the commission’s chair in effect to shut up on the issue of disability equality before birth. His exact, rather sinister, words were, “I appreciate this approach”—the commission’s approach—“would be a departure from your previous engagement in this field”. What is the commission’s approach? He states that the commission would have to agree its position on disability equality before birth based on an analysis of all relevant rights affected and consider whether and how to act on the issue through a prioritisation process based on strategic objectives.
Since when was equality, and especially a disabled human being’s equal right to exist, based on a prioritisation process and weighed against the rights of other groups? Does this apply to other protected characteristics covered by the Equality Act? Is it okay to deny their equal right to life specifically because of their protected characteristic? I think not. This is inequality. This is disability discrimination perpetuated by the very equality body that I, and every other human diagnosed before birth with a disability, should be able to rely on to defend our intrinsic equality. Yet I have sadly discovered that I cannot do so.
Within the last few hours, the commission chair has rushed out a letter to stakeholders highlighting the commission’s work on equality, presumably in anticipation of my speaking in this debate. That sadly confirms to me that the commission is missing the point: that the volume of activity is no substitute for a nominated disability champion in the form of a disability commissioner. It does nothing to lessen my fear that some non-disabled people see themselves as passionate advocates of equality but equality on non-disabled people’s terms. That has to change, and as disability commissioner I would have ensured that it does change.
Perhaps the most chilling aspect of all this is that no one was meant to know about the situation in which I find myself, because I was meant to acquiesce. Indeed, at one point I was asked not to mention it to other disabled people for fear that it would leak. I am not requesting that the Government get involved. This is a struggle for equality between the commission and me as a disabled person. However, in conclusion, I thank all noble Lords who have encouraged me to stand my ground and to refuse to accept that this is a done deal, and who have asked how they can help. I ask noble Lords to make their support for my position known, because the fact remains that we need a strong disability commissioner, and a genuine Equality and Human Rights Commission, now more than ever.
(7 years, 6 months ago)
Lords ChamberMy Lords, I start by joining other noble Lords in congratulating my noble friend Lord Shinkwin on steering the Bill through its Lords stages so far and on his engagement with noble Lords on the Bill. It raises important and sensitive issues about disability rights and abortion and it is quite right and proper that these are discussed and scrutinised at length by your Lordships. I am also grateful to the noble Lord, Lord Winston, for his amendment and for the scientific authority which he brings to the issues. I commend all noble Lords for the quality of the debate we have had on this amendment.
As I set out in Committee, the issue of abortion is a matter of conscience for noble Lords, as the noble Lord, Lord Alton, and the noble Baroness, Lady Massey, reminded us. The decisions that we take on this transcend the normal political or partisan divides and it is for that reason that the Government have taken and continue to take a neutral position on this issue and on the Bill. The Government do not, therefore, have a position on the amendment of the noble Lord, Lord Winston, or on those that will follow in the House today. I do not intend to comment on subsequent amendments unless there are specific points that noble Lords wish to put directly to me and to which I can respond.
I do, however, wish to make one point that I believe is germane to the issues under discussion in this amendment and, indeed, in the Bill in general, and that is that it is vital that we have accurate statistics on and evidence for the reasons for termination of pregnancy. Officials are working directly with hospital staff to improve reporting on abortions. We have also reminded all doctors involved in abortion care of their legal responsibility under the Abortion Act 1967 and the Abortion Regulations 1991 to submit form HSA4, the abortion notification form, within 14 days of a termination.
Overall, between 2013 and 2015, there was an 18% increase in the number of reported ground E abortions. While we obviously cannot claim that this increase is solely the result of increased reporting of these abortions, as opposed to increased instances, we do know that this is the case in some of the units that officials have been working directly with. The department will continue to monitor carefully levels of underreporting of abortions for foetal abnormality.
The noble Baroness, Lady Stroud, asked about palliative care for babies. I fear that I do not have that information to hand but I will be happy to write to her on the issue.
My Lords, I thank all noble Lords who have expressed support for my Bill and I thank the noble Lord, Lord Winston, for his medical lecture on so-called serious foetal anomalies. I address the noble Lord, Lord Winston, with respect but I also address him and all other noble Lords as an equal. I should say at the outset that I totally reject the very premise of this amendment. Other noble Lords have already explained why the amendment is totally inappropriate and, indeed, crassly insensitive, from a Northern Ireland perspective in particular, when it is linked to Amendment 8. I offer a disabled person’s perspective on why it is unacceptable. I have been consistently clear that the purpose of my Bill—a disability rights Bill—is to bring the law as it applies to disability discrimination before birth into line with the laws that your Lordships’ House has already passed to counter disability discrimination after birth.
Noble Lords will know that I accepted an amendment in Committee for an impact review as a logical amendment to a logical Bill. However, in the context of a Bill which promotes disability equality where discrimination begins before birth, this cynical amendment is not remotely logical. Indeed, it runs counter to the very essence of my Bill. The amendment reinforces discrimination because it singles out even more acutely a particular group for destruction on grounds of disability. It seeks to legitimise their destruction after 24 weeks with terminology that commands no clinical consensus and despite the fact that cell-free foetal DNA can first be detected in maternal blood as early as seven weeks’ gestation, which means that genetic or chromosomal abnormalities are being detected well in advance of 24 weeks. So what justification is there for abortion after 24 weeks on the grounds of so-called serious foetal anomaly?
Some noble Lords have seen that I recently asked the Department of Health about the number of fatal foetal abnormalities diagnosed in each of the past five years. The answer was that the information is not collected centrally. I followed up and asked about the number of fatal foetal abnormalities diagnosed after 24 weeks in each of the past five years. The answer was the same: the information is not collected centrally. I find that revealing, not because information is being concealed but because it reflects the reality—the truth of the situation.
Those noble Lords who were invited to attend a meeting on this issue, which I understand was held somewhere in the House on Wednesday, could be forgiven for thinking that there is some medical authority—some clear medical consensus—behind the definition of “fatal foetal abnormality”. There is not because there is not an agreed definition. Indeed, the consensus is that what is considered fatal or life-limiting involves a degree of subjective judgment which is influenced by understandings and by the availability of technology, both of which can change with time. The noble Lords who received the invitation to that meeting might also have got the impression, as was intended by the wording of the invitation, that those 230 disabled babies aborted after 24 weeks in 2015 had all been diagnosed with severe or fatal foetal abnormalities. They were not. Of the 659 babies aborted for the crime of having Down’s syndrome, for example, two were aborted at 25 weeks, one at 26 weeks, one at 28, one at 30, another at 31, three at 32 weeks, two at 33, two at 34—and one at 39 weeks.
(7 years, 7 months ago)
Lords ChamberMy Lords, I thank all noble Lords who have spoken in support of my Bill, and I thank sincerely and in good faith the noble Baroness, Lady Massey of Darwen, for her amendment, which I not only accept but welcome as a logical extension to a logical Bill. It is a Bill that brings the law as it currently applies to disability before birth into line with how your Lordships’ House has already ensured that the law applies to disability after birth.
The amendment is about the impact of my Bill. But it is a simple, wonderful truth that I owe your Lordships’ House so much because of the impact of legislation that it has already passed. Without your Lordships’ House, a commitment to disability equality would never have been enshrined in law. Noble Lords will know that noble giants such as Jack Ashley and Alf Morris, with both of whom I had the privilege of working and whose spirits I invoke today, led the fight to outlaw disability discrimination. All my Bill does is to carry on their noble work, because it would allow us to outlaw disability discrimination where it begins—at source before birth. It is simply unfinished business. The amendment would help because it would measure the Bill’s impact on disabled children, their families and carers, and on the provision of support services.
When I think about the incredible role that strong women—women such as my own mother—play in the lives of their disabled children, anything that supports families and carers after birth and, crucially, on diagnosis before birth is welcome. Moreover, it stands to reason that such support services, be they provided by the state, charities, parents’ organisations or disabled people’s organisations, should be included in an impact review so that people can learn and disseminate best practice and, where necessary, ensure that improvements are made.
(8 years, 1 month ago)
Lords ChamberMy Lords, I thank the noble Baroness, Lady Watkins, for giving your Lordships’ House an opportunity to consider such an important issue.
Like the noble Baroness, Lady Masham, I wonder whether noble Lords might consider looking at the issue from a slightly different perspective, that of a patient—in this case a little boy who spent much of his childhood up to the age of 10 in an NHS hospital bed. So frequent were those little boy’s fractures that more often than not he spent either Christmas or his birthday, which happened to be in June, with his broken leg in traction. Some years he even managed to celebrate both his birthday and Christmas in hospital. Often in pain, frightened and tearful, the boy found that the familiarity of the faces of the doctors and nurses on the children’s ward provided real comfort and reassurance. Today it might be called “continuity of care”, but for that little boy it meant everything. I know, because that little boy was me.
Would the statistics—the 52,000 staff currently working in NHS trusts and clinical commissioning groups who are EU nationals, or 4.95% of the total, 7,297 of them from Poland, 7,121 from Spain, 6,227 from Portugal—have meant anything to my younger self? Probably not. Now, though, such statistics and others mean much more to my older self. For example, as has been mentioned, according to the Royal College of Nursing there are currently 23,000 EU nurses registered to work in the UK. Small wonder that the RCN argues that EU nurses make a vital contribution to the NHS and the health of the nation. What about social care? According to the King’s Fund, an estimated 6% of jobs in the UK social care sector and 12% in London’s are filled by EU migrants.
Taken together, all these statistics surely point to the fact that as a nation we need to give urgent consideration to how we grant these people the security that they need as soon as possible. My fear, as other noble Lords have expressed, is that otherwise we will not retain their valuable services. I was concerned to read the words of the chief executive of the Voluntary Organisations Disability Group on this issue, who says that,
“in some services around one quarter of the frontline workforce originate from the EU … If EU staff become anxious and leave there will be an immediate impact on capability and capacity within the sector, which will compound existing workforce shortages”.
The UK cannot afford for that to happen, not least because, as Simon Stevens, chief executive of NHS England, so eloquently argued in his excellent article in Tuesday’s Daily Telegraph, to which the noble Baroness, Lady Watkins of Tavistock, already referred:
“If home care disappears and care homes close, A&Es are quickly overwhelmed”.
Simon Stevens is surely absolutely right to make the further point that,
“it should be completely uncontroversial to provide early reassurance to international NHS employees about their continued welcome in this country”.
I therefore draw comfort from the assurance given by my right honourable friend the Secretary of State for Health that EU nationals already working here are a welcome part of the NHS and that as a country we value them. As the editor of the Health Service Journal recently said, it is vital that existing or potential NHS staff with European backgrounds do not decide that the UK is no longer a place for them. Surely such a danger underlines the need for my right honourable friend the Secretary of State for Exiting the European Union to have securing an agreement on the status of EU nationals working in the NHS and social care very high up his to-do list.
I hope that the Brexit negotiations will be heavily influenced by both principle and pragmatism: the principle of staying true to the democratically expressed majority view of the UK public in the referendum, including as it relates to freedom of movement, and the pragmatism of ensuring that adherence to that principle reflects the generosity of spirit that makes Great Britain great.
In that vein, on this, the last day of term before we rise for the Summer Recess, I pay humble homage to a great British parliamentarian and a fellow charity campaigner so cruelly taken from us barely a month ago. I speak, of course, of Jo Cox. So much has happened since then to distract our attention. For me, that means only one thing: as her fellow parliamentarians, we must redouble our efforts to keep her precious memory alive through deeds as well as through words. A dedicated public servant, she would, I imagine, have celebrated the dedication of those EU nationals working as public servants in our NHS and social care sector. What a fitting tribute to her it would be for Her Majesty’s Government to make achieving progress in securing their status a top priority in the Brexit negotiations.