Penrose Inquiry
Tom Clarke Excerpts(9 years, 7 months ago)
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Jane Ellison
I absolutely agree with the right hon. Gentleman’s last point. This is a tragedy that goes beyond party and has spanned many Parliaments now and we do need to move forward. I can only reiterate my frustration at the fact that we were not able to make more progress in this Parliament, but I can give the assurance to the House, and through Members to their constituents, that a great deal of detailed work has been going on, and I am sure it will continue as the many pages of Lord Penrose’s inquiry are considered.
With regard to the one recommendation that Lord Penrose makes—that the Scottish Government take all reasonable steps to offer a hepatitis C test to everyone who had a blood transfusion before 1991—I can confirm that the Department of Health concluded a UK-wide look-back exercise in 1995 to try to identify everyone who might have received infected blood prior to 1991, but the Department will consider if anything more can be done on this in England. That work is very important and will be undertaken.
On the next steps, as confirmed in the written ministerial statement yesterday, all relevant documents have been, or will be, released. The Government’s initial reaction is that another inquiry would not be in the best interests of sufferers and their families as it would further delay action to address their concerns. The strong message I have had is that it is time for action, and I have just heard the same message from the shadow Secretary of State.
The apparent thoroughness of Lord Penrose’s report and the fact that it sets the events in Scotland in a wider UK context gives us a sense of the fact that he has looked at these events in the widest possible way, including for England. He has done a thorough job of examining the facts, and we now for the first time ever have that detailed authoritative narrative account of what happened, and that is an important building block on which the next Government can take their policy forward.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
You will recall, Mr Speaker, that on many occasions I have raised the case of John Prior, who is from Moodiesburn in my constituency. He was infected in the ’70s and his files have been lost. To put it bluntly, he is devastated; he says that the report offers him nothing. He regards the £25 million on offer from the Prime Minister as peanuts—not even sufficient for Scotland. The report cost £12 million, went on for seven years and has produced one recommendation. Does the Minister accept that that is not sufficient to respond to 4,000 people who are suffering? May we have a final agreement—a settlement—for every individual, consistent with what happened in Ireland and with the last Labour Government’s delivery on miners’ compensation? Otherwise, this report will be seen as a mountain that produced a mouse.
Jane Ellison
This inquiry was commissioned by a Scottish Minister—I believe it was the current First Minister—in 2008. It is a matter for the Scottish Government to comment on the length of time taken by Lord Penrose and the expense. The money announced in yesterday’s written ministerial statement was, as we said it would be, part of an interim response—it is interim because this very long report comes right at the end of this Parliament. I am sure that the next Parliament and the next Government will want to return to this and give a more substantive response to the findings of this very thorough inquiry.
Vaccine Damage Payments Act
Tom Clarke Excerpts(9 years, 8 months ago)
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Mr Russell Brown (Dumfries and Galloway) (Lab)
A few colleagues are here this afternoon, Mr Caton, but our all-party parliamentary group for vaccine damaged people has more than 120 members, so I suspect that some of them will be dropping in and out as the afternoon progresses.
I am delighted to have secured today’s debate and I am pleased that we have been joined by the families of vaccine-damaged people, some of whom have seen their children grow from having been vaccine-damaged in infancy to men and women who are now in their 40s and 50s. However, when I say I am delighted to have secured the debate, after attempting to do so regularly since early January, the fact is that the all-party group, of which I am the chairman, really wanted at some point to meet the Minister, so that she could hear what the families go through on a daily basis with their—it is a bit difficult to say “children”, because, as I said, some of those children are now in their 40s and 50s. However, I want to share some of those experiences and difficulties, and I know that colleagues in the Chamber today will want to do likewise.
The all-party group supports families in their view that the Vaccine Damage Payments Act 1979 is now out-of-date and should be reformed. Let me be absolutely clear: from the very first meeting that I attended in the ’90s of the then all-party parliamentary group for vaccine-damaged children, the families have been resolute in their support for the Government’s vaccination programme, and they firmly believe in the concept of herd immunisation.
The Pearson commission was a major inquiry into civil damages in the 1970s. It recommended that the Government should accept liability to pay full compensation for vaccine injury on the basis that vaccine injury is the very occasional price that society pays for the benefit of defeating disease through national vaccination programmes.
At that time, vaccines were not such a major part of the public health programme as they are today. During the intervening years, vaccines have greatly grown in importance and use. It was always intended to be a temporary measure—a £10,000 payment on account pending the outcome of the Loveday case. Now the award is £120,000, but that is not adequate compensation for someone who is seriously and profoundly disabled.
It is not adequate to say that consumers should sue as an alternative. No civil claim has ever succeeded for vaccine injury in this jurisdiction. That is not because people in the UK are different from elsewhere in the world; it reflects the fact that our legal system is not claimant-friendly. The situation has got much worse since legal aid has been abolished. It is now impossible to take on a multinational pharmaceutical corporation, as the costs of a claim are so high that no one could possibly afford it. Court fees have just been increased by some 600%, so it costs £10,000 just to issue a claim, which has not helped the situation.
It is in the interests of society that the rate of uptake of vaccines is kept high to achieve that herd immunity. That needs an effective safety net, so that consumers are assured that in the event of a serious disablement, they will be looked after. The system needs to be reformed to be more consumer-friendly, so that on close calls on causation, consumers or patients are given the benefit of any doubt, as we see in the USA. In the last four years, no awards of any compensation have been made for vaccine injury, despite hundreds of applications. The system is not working.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
I use this opportunity to apologise to you, Mr Caton, and to my hon. Friend, because I have to leave soon to be at Downing street at 3 o’clock to present a petition with people with learning disabilities about things, such as Winterbourne View home, that ought not to be happening. I apologise that I have to leave, but I congratulate my hon. Friend on his wonderful work, and the all-party group. Above all, I congratulate the vaccine victim support group and the indomitable Olivia Price on the fantastic fight that they have conducted over many years. I hope that they get the success and the response that my hon. Friend and this debate invites.
Mr Brown
I thank my right hon. Friend for his intervention. Those of us who know him realise that he is a champion for those less fortunate in society, and especially for the disabled. I recognise that he has a family member who was vaccine damaged as a child.
Why is the coverage of the scheme so patchy here in the UK? Adults are almost all excluded—why should that be? All seasonal flu vaccines and all hepatitis vaccines are excluded—why? That is not an effective safety net.
Recently, more than 70 people suffered narcolepsy as a result of the swine flu vaccine. That is a very serious condition, but the Department for Work and Pensions has refused to accept that it amounts to a 60% disability and has appealed against a tribunal finding that it is a severe disability. The Department should fight consumers less and support them more.
Awards of compensation for vaccine injury should be available—that is compensation measured by the amount of loss actually suffered, not an arbitrary amount. Reform could be a win-win, in that we could promote social justice and ensure an increase in the rate of vaccination that will benefit society as a whole.
Contaminated Blood
Tom Clarke Excerpts(9 years, 10 months ago)
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Alistair Burt
There is no doubt that these matters predated devolution. As most colleagues are aware, there is a Scottish inquiry going on. Almost inevitably when it reports, it must report on things that pertain to the United Kingdom Government. I notice that the Secretary of State for Health has joined us, which illustrates the importance of this issue to all of us. He is enormously welcome, especially given the burdens that he carries. The UK dimension of this is indeed very real.
Alistair Burt
I will give way, but I hope that Mr Speaker will be understanding.
Alistair Burt
My latest understanding is that the Penrose inquiry has said that later this month it will announce when it will report so I think that by the end of January the leader of the inquiry will have announced when publication will take place. I will touch on that later; the non-reporting so far is one problem that we have had to deal with.
Let me give one further brief story as part of the background to the statistics. I have been privileged to work with one family where three brothers died. To give an indication of what that meant, the sister wrote to me:
“the story of my three brothers, all dead, as a direct result of the treatment given to them by the NHS. The impact on the family? A devastation that time has not and never will heal, owing to the lack of acknowledgement over these deaths by both the Government and the medical profession…Family life is never the same with any bereavement, and we can only cherish their memories and their offspring, but there are still so many un-answered questions as to the decisions made”.
Each of us has a number of stories that we could raise, and I apologise for not being able to read out more.
Why now? The answer is that there has been a lot going on in recent times. This Parliament began with the very first Back-Bench debate, initiated by the hon. Member for Coventry North West (Mr Robinson), who I am pleased to see in his place. I am sure that that helped lead to an announcement in January 2011 by the then Secretary of State of further changes to the funds providing payments, but underlying issues remained outstanding. We were all approached.
On 18 October 2013, I asked the Prime Minister a question on the issue. I will not repeat the detail, but it got a warm response from the Prime Minister who understood the problem and promised that he would put support into it, meet the gentleman that I wanted him to see, and take it up. To put this in historical context, the reason for approaching him was that the scale of the tragedy is certainly on a par with those issues for which the Prime Minister has apologised in this Parliament—Hillsborough and Bloody Sunday—having the bravery to recognise what had been done in the past, with the authority that only a Prime Minister could have.
We took the Prime Minister at his word. I was proud to take my friend, my constituent and his colleague to that meeting. We said we needed No. 10 to offer to work on what more might be done to close off the issue, and since then the Prime Minister has indeed put members of his policy team to work, together with my hon. Friend the Minister. I am grateful for the Prime Minister’s engagement and I am, of course, hopeful. I hope that my hon. Friend the Minister will say more about that work.
My question was followed up infinitely more powerfully by a debate on 29 October led by Paul Goggins, in which he outlined some of the issues that we agree are still to be settled. He spoke principally about the funds and people’s finances, the bureaucracy and inconsistency of the funds, the discrimination suffered by those who did not fit certain categories, the crude distinction between stage 1 and stage 2 hepatitis C sufferers, the inadequacy of funds for making discretionary payments, and the absence of transparency and accountability over the years. He suggested that if the Government were to continue to reject a public inquiry, there should be an alternative process, including:
“In addition to fair financial support, those who have suffered so much are still owed a full explanation and a sincere, profound apology.”—[Official Report, 29 October 2013; Vol. 569, c. 201WH.]
Hovering in the background of all our deliberations were a Government who were prepared to take on a public inquiry. In 2008, the then Health Minister for Scotland, now the First Minister, announced to her great credit the sort of judicial investigative inquiry on the transmission of infectious disease via transfusions in Scotland that has not been held for the UK as a whole. It covers effectively all the major issues dealt with by Archer, and will very likely have comments to make that will have a bearing on UK-wide policy. It may well have implications for financial considerations in respect of responsibility for what happens and what needs to be done.
As I told the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke), we do not yet have that report, but while MPs have waited for it we have not been idle. In April the all-party group and additional colleagues working with me, held two public meetings at Westminster. We wanted to keep the community informed of what was happening, discuss expectations and hear from them. As MPs attacked the issue yet again, we were asking the Government to focus on the key issues. Those meetings helped to reinforce our sense that we were talking about the right themes—the changes that life had brought for people who had not expected to live, and the financial considerations that that now brought them. There is the problem of leaving anything; the problem of mortgage and insurance; and the problem of the bereaved and the dependants, which we all know very well. They all have to be in the front of the Government’s mind as they approach this.
Graeme Morrice (Livingston) (Lab)
May I say from the outset how pleased I am that the right hon. Member for North East Bedfordshire (Alistair Burt) has secured a debate on an issue that has had profound and devastating consequences on the lives of at least two of my constituents and indeed thousands of individuals and families across the country?
I hope that through my contribution I will be able to give a voice to my constituents who have been affected by contaminated blood and who, up until now, have had no answers to what is considered to be one of the worst tragedies in modern health care. The experiences of my constituents echo many of the findings in the APPG report, particularly in terms of the inadequacy of the support available and the difficulties encountered when applying for entitlements from the Skipton Fund. I want to take this opportunity to praise the work of the APPG for haemophilia and contaminated blood.
I was deeply saddened to hear of the plight of two of my constituents who received contaminated blood during the 1980s.
Mr Tom Clarke
My hon. Friend will be aware that some of us who have sought for many years to get legislation through the House but have not yet achieved it feel that whoever wins the next election should make sure that time is available for this. Does he agree with that objective?
Graeme Morrice
Yes, I certainly concur with my right hon. Friend and commend him for his work in this field.
My constituent Mr Billy Cannon of West Calder suffered from a burst ulcer in 1986, which meant he required two blood transfusions. Mr Cannon was fine after the operation and recovered. However, it was not until August 2010, some 24 years later, when he was diagnosed with advanced liver cancer that he discovered he had hepatitis C. Sadly, after a brave battle, Billy Cannon, aged 57, passed away in February 2013. The loss of Billy, understandably, has been devastating for the Cannon family and I wish to take this opportunity to pass on my sincere condolences to Linda, Billy’s wife, who has shown great courage in the face of a very difficult set of circumstances.
It is the circumstances around Mr Cannon’s death that are so hard to accept because there have been no answers, no apology and no acknowledgement that mistakes were made that led to his untimely death. His wife recognises that apportioning blame will not bring back her beloved husband. Nevertheless, the death of Billy has had such profound consequences for many different aspects of her life and leaves so many questions unanswered.
Like Billy Cannon, another constituent, Vera Gaskin of Livingston, also contracted hepatitis C from contaminated blood. You, Madam Deputy Speaker, may recall that I raised her circumstances with the Prime Minister in the House a few years back. Mrs Gaskin received a blood transfusion during her treatment for cancer in 1985. Fortunately, Vera recovered from the cancer. However, later in 1996 when she began to feel unwell, it was revealed that she too had hepatitis C. Again, no explanation was given to Mrs Gaskin of how she had been infected with contaminated blood.
What is evident in the case of both of my constituents is the lack of information on the circumstances surrounding the passing of hepatitis C through contaminated blood. It is for this very reason that it is so important that there is a review of the events and decisions that led to the tragedy.
Luckily, Mrs Gaskin was in the early stages of the virus when she was first diagnosed and could therefore receive treatment. Nevertheless, living with hepatitis C has been particularly difficult for her and has impacted on all aspects of her life and that of her husband and family. The stigma alone of having hepatitis C has been mentally draining for Mrs Gaskin and her quality of life has been greatly reduced. The hepatitis C has denied her many opportunities and brought many difficulties.
What makes Vera Gaskin’s story even more upsetting is that she has not only had to come to terms with the devastation of her diagnosis, but has had to deal with an inadequate support system, further adding to her distress. Her view of the Skipton Fund, set up to help those affected by the tragedy, is:
“It is not fit for purpose, does not serve the victim and is causing more harm than good”.
I believe that this speaks volumes about the effectiveness of the support arrangements put in place following the tragedy.
I recognise that some improvements have been made to the support and compensation available to those affected, but changes are still clearly required in two areas: first, in the criteria used to determine entitlement for payment from the Skipton Fund, and, secondly, in the amount of financial support available. Despite having the medical proof that she had cirrhosis—the medical criteria required in order to receive further compensation—Mrs Gaskin was denied her stage 2 payment from the Skipton Fund.
She is not alone in encountering such difficulties. The APPG report revealed that 16% of all claims considered by Skipton have been deferred or rejected, many on the basis of insufficient proof. It was not until after a year-long battle that Mrs Gaskin’s application to receive her second stage payment was approved. What is evident from my constituent’s experience is that the criteria used by the Skipton Fund are too strict and only make it more difficult for victims to receive funds that they are perfectly entitled to. In response, I would urge the Government to take action to improve the system of allocating funds and to review the criteria, making it easier for those affected to provide proof.
The second important issue about the support arrangements is the amount of compensation available. Although no amount of money will be able to take away the pain experienced on a daily basis by those affected, it is clear that the amount of compensation available is simply not enough. Many individuals living with hep C continue to experience hardship and financial difficulties, despite the existence of Government-established funds, which is why I would urge the Government to reconsider the amount available with a view to increasing it so that individuals can maintain a good quality of life.
In conclusion, I am sure all Members would agree that what my constituents and others across the country went through is tragic and cannot be undone. That said, I am hopeful that a positive outcome can be reached in the form of a review of the circumstances and the support arrangements available—for the sake of those who are sadly no longer with us and for the sake of those who continue to suffer. The all-party group report makes some important recommendations, to which I hope the Government will respond carefully and positively. I strongly support the report’s recommendations, particularly the calls for a public apology from the Prime Minister on behalf of successive Governments. I hope that, following this debate and, most importantly, following the publication of the Penrose inquiry, some form of justice will be delivered for each and every individual and family across the country who continue to have to deal with the consequences of this awful tragedy.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
I apologise for my cold, but I promised my constituent, John Prior from Moodiesburn, this morning that I would seek to put on record a very controversial letter—some would say a lengthy letter—which he sent to me and which I thought I should share with the House.
Before doing that, I congratulate the all-party group on its comprehensive report and the right hon. Member for North East Bedfordshire (Alistair Burt) on the way in which he introduced the debate and on the work that he is doing. I welcome the other speeches that we have heard, including the one from my hon. Friend the Member for Kingston upon Hull North (Diana Johnson).
I turn to the letter from my constituent, a voice that I think should be heard. John Prior said this:
“I was told aged 20 in 1994 that I had chronic hepatitis C by my haemophilia consultant at the Glasgow Royal Infirmary. I had been given contaminated blood as a child at Yorkhill children’s hospital in Glasgow.
The blood was donated from pooled donations of thousands of donors including prisoners in US jails. The haemophilia doctor told me I would eventually need a liver transplant but did not know when. He said it could be 3 months, 3 years or 30 years. I was in complete shock, myself and my family thought I had AIDS. It’s been like living on death row not knowing when I would need a liver transplant.
To my horror, my GP wrote to my employer and told them I had hepatitis C and did not expect me to work for more than 7 years due to my infection. The letter was dated one year before I was told I had hepatitis C, so my work knew about my infection before myself.
As an adult I kept my hepatitis C status to myself and close friends and family. I never told my colleagues. I only told one of my bosses as I was struggling in work, I couldn’t concentrate and kept nodding off at my desk. He’s been very supportive and lets me do menial jobs that don’t require much thought. My sick record at work is horrendous and I’m lucky to still have a job.
Relationships were virtually impossible for me as I felt worthless and frightened I would infect someone. I could not get a mortgage, and life insurance and travel insurance are prohibitive.
My treatment at one stage was 20 tablets a day and 2 injections a week into my stomach which I did myself for 6 months. It was a horrific experience and I felt I just wanted to die. At one point the nurse took blood from me for part of a study into why people with hepatitis C are dying at different rates. She told me she was surprised I was not taking anti-depressants.
My liver consultant applied to Skipton for the stage 2 payment but my application was rejected because I had not reached the ‘crisis’ point. How can a charity ignore the recommendations of a liver consultant? My experience with Caxton was just as bad. It would take numerous emails and phone calls to get in contact with them. I felt like I was begging the way, they treated me, they insisted I provide a letter from my consultant to confirm I was on treatment. It was I who had to run around seriously ill arranging everything for Caxton. I will never contact Caxton again. These charities are not fit for purpose”.
My constituent goes on to make other comments which I think it best not to repeat. His letter goes on to say:
“Over 80% of victims do not receive any ongoing financial help from Skipton yet we are ill.”
He concludes:
“After all that’s happened to myself I will have to be reassessed by the DWP for my entitlement to DLA which I use for my Motability car. I was originally awarded DLA for life 24 years ago. I am worried sick that I will lose my car as I need it to get me to work/hospital appointments. Does my Government expect me to take infected dirty syringes onto a bus? My health will only deteriorate. There is no cure for severe haemophilia. Government policy gave me hepatitis C yet they want to reassess me for DLA.”
That took some time, but I do not apologise. It is right that people who have had such experience should have their voices heard.
I referred earlier to legislation. So complex are the issues and so long have they gone on that legislation is necessary. I attempted to carry through this House the Alf Morris Bill which had made its way through the House of Lords. Unfortunately, we ran out of time. In March last year I succeeded in introducing a ten-minute rule Bill, which went a little further than the report. For example, it included the need for an NHS compensation card, which would lead to priority treatment. Following that, I had a meeting with the then Leader of the House, where it was made clear to me that time would not be made available. I am not sure that he shared the sense of urgency that I tried to impart.
I believe profoundly that an apology, important though it is, is not enough. Compensation is appropriate. There ought to be closer working between the DWP and the NHS. We have many lessons to learn from Ireland and elsewhere. I acknowledge those who have worked so very hard on this issue, especially Lord Morris, whom we remember with great affection today. We owe it to them to deliver.
Jane Ellison
I will come on to that. Although I cannot be as specific as I would like, I will try to give the House some sense of the way forward.
I stress that the support currently provided is over and above any other state benefits that infected individuals and their families may receive, and moneys paid under the schemes are not subject to tax. Some hon. Members have raised issues relating to the DWP, and I will of course bring those concerns to its attention.
I am aware that many hon. Members have concerns, which they have expressed in some detail, about the way that support for those affected is delivered. During the past year, I have listened to and actively considered the thoughts of all colleagues about how to improve the system. I have met the officers of the all-party group, and spoken a number of times to my right hon. Friend the Member for North East Bedfordshire.
I acknowledge that there is scope for reviewing the support system. I have been open with hon. Members about the fact that I share their concerns about the charitable basis of that support. I thank my right hon. Friend and the all-party group for the survey on which they recently collaborated. This is the first large-scale effort to consult beneficiaries, their families and the wider public on the current system. I will certainly consider its findings—I have looked at the executive summary of the report, which was only published yesterday—and all the other sources of information. From my conversations with Members over the past year, I have a good sense of the report’s direction of travel and of their concerns.
As I have said, in considering possible reforms to the current system, we must take into account Lord Penrose’s findings and recommendations before any specific proposals are made, but I have been ably supported by my civil servants in looking at possible reforms. His report is likely to be lengthy: to give the House some sense of that, the interim report published in 2010 exceeded 600 pages.
If Penrose does not publish until shortly before the House rises, it will be challenging, as Members have recognised, to provide a considered and thoughtful Government response in such a short time. I want to give due respect and consideration to Lord Penrose and his report, not least because it matters so much to so many individuals and families. As I have said, after all they have been through, it would be terrible for us to announce measures that then had to be unpicked or revisited. I reassure the House that however late in the Parliament Penrose reports, we will make a response, although that will inevitably have to be an interim response.
Having acknowledged that not everyone is satisfied—far from it—with the current system of support, it is extremely important to remember that the system makes an enormous difference to the lives of many beneficiaries. To date, more than £365 million in support has been paid to more than 5,000 people in the UK affected by HIV and hepatitis C and their families. Through the reforms made in January 2011, which some Members have mentioned, the Government have improved the system of support. Since they were introduced, more than £70 million in extra funding has been made available in England.
Something that is new since the House last debated this issue is the therapies that are coming through. Members have spoken about the side effects and impacts of existing therapies. Many of the new therapies have a much higher cure rate than existing ones, with far fewer side effects. We understand that cure rates for new therapies are between 90% and 95%, and that the courses of treatment are much shorter. Those figures are based on clinical trials. New data from the early access programme will be evaluated to confirm the robustness of that finding, but it is obviously encouraging news.
I am encouraged by some of the improvements that we can make to the quality of life of those who have suffered from their infections for so long. New treatments for hepatitis C are becoming available through the NHS. While we have been waiting for NICE to publish its final appraisal of the first of the new drugs—Sofosbuvir and Simeprevir—NHS England has taken two important steps to ensure that eligible patients with late-stage hepatitis C can expect to have received treatment by the end of 2015. In April 2014, it published an interim clinical commissioning policy statement to provide access to the new therapies for patients with liver failure. More than 700 patients have already been treated through this policy, at a cost of £38 million. Specialist centres were procured to deliver this early access treatment around the country.
The NHS is developing a further interim clinical commissioning policy for patients with compensated cirrhosis to reduce the risk of their developing decompensated cirrhosis or liver cancer. Subject to its internal approval processes, the NHS is aiming to have that in place from this April. I have confirmed with the clinical director that if any hon. Members are approached by constituents with hepatitis C, they should advise them to consult their GP about a referral to a hepatology specialist to determine whether they have developed cirrhosis.
Medical advances continue to improve the ways in which HIV and hepatitis C can be treated and managed, and I want to take this opportunity to assure the House that the UK now has one of the safest blood supplies in the world, and independent experts continually review current safeguards.
This debate has again allowed me to hear about the issues with which many of those affected live daily. I of course recognise that improvements must be made to the system that provides financial assistance, and I have given considerable thought to that over the past year. Together with those we represent, we need to be realistic about the challenge of making changes that are fair and sustainable. It is very welcome that we can work on a cross-party basis—that is absolutely vital—and it is most reassuring that several hon. Members have emphasised that.
I am hugely frustrated that the much longed-for closure cannot realistically be achieved in this Parliament. Nevertheless, a new Parliament is imminent, and it will provide an opportunity for the next Government to provide closure.
Mr Tom Clarke
The Minister will recall that my right hon. Friend the shadow Secretary of State made some profound comments about the role of the civil service in dealing with these problems. Will she take time to respond to them?
Jane Ellison
I have noted the comments of the shadow Secretary of State. I can only speak from my own experience and say that in all the ways in which I have wished to consider this issue—those have ranged widely over the past year—I have been ably supported by my civil servants. Ultimately, this decision is a political one.
The issue needs to be resolved once and for all. I assure hon. Members that the Prime Minister, the Secretary of State and I continue to work towards that vital aim. I have said that however late Penrose reports, we will respond while the House is sitting. Inevitably, that will have to be an interim response. However, I hope that we can give the House some sense of the work undertaken over the past year and, at that time, respond to the direction of travel signalled in the all-party group’s report and the work of my right hon. Friend the Member for North East Bedfordshire.
In conclusion, I want to say that this was an utterly appalling tragedy, which has caused grief and sadness to many people and their families, as we have so often heard. The Government must do right by those people on whose behalf so many Members have spoken today. I will take away everything that has been said, and as long as I am in my current office, I will continue to work to bring to Parliament the conclusion that so many Members have said they want.
Oral Answers to Questions
Tom Clarke Excerpts(9 years, 10 months ago)
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Mr Hunt
Absolutely. I think that what shocks people is Labour trying to make political capital out of winter pressures in the NHS, and then sweeping the poor care that happened on its watch under the carpet. We are making great progress at East Kent Hospitals NHS Trust: there are 82 more nurses, and more than 100 more doctors. That is because we are facing up to the problems, not running away from them.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
7. With reference to his Department’s publication “Transforming care: A national response to Winterbourne View Hospital”, published in December 2012, if he will take steps to ensure that the statutory guidance implementing the adult autism strategy uses clear language and is mandatory.
The Minister of State, Department of Health (Norman Lamb)
The revised autism statutory guidance will be written in clear and accessible language. It will include existing obligations from the 2010 strategy and recent legislation such as the Care Act 2014. Local authorities and NHS bodies are required to take the guidance into account, or provide a good reason for not doing so.
Mr Clarke
The Minister will be aware that, under the Mental Health Act 1983, people with autism can be compulsorily detained for assessment and treatment although there is no evidence of mental illness. Will he join the National Autistic Society and others in endorsing the Justice for LB Bill campaign and seeking to end that wholly unacceptable practice?
Norman Lamb
The right hon. Gentleman has raised an incredibly important point. I, too, pay tribute to the campaigning of Justice for LB. We are strengthening the guidance relating to the code of practice under the Mental Health Act, and that strengthened guidance will be published shortly. We are considering whether amendments to the Act are needed, and we are also drafting a Green Paper. I should be happy to discuss the issue further with the right hon. Gentleman, and to have further meetings with campaigners.
Oral Answers to Questions
Tom Clarke Excerpts(10 years, 4 months ago)
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Dr Poulter
We do not have any financial information, but it is important to point out that the Born in Bradford study showed that there was an increase in the risk of birth defects from 3% to 6% in consanguineous marriages. However, that clearly highlights that not all babies born to couples who are related have a genetic problem, and the key issue is to help women to make an informed choice before they get pregnant and to direct them to genetic counselling where that may be required.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
8. What the new deadline will be for moving people with a learning disability out of assessment and treatment units and into community provision.
The Minister of State, Department of Health (Norman Lamb)
We are working with NHS England to set out clear expectations for progress and improved rates of discharge. This includes NHS England producing an action plan to measure progress against. The Winterbourne View joint improvement programme is working with local areas to identify issues and to support them to make progress.
Mr Clarke
Given the severe lack of funding in this area and the need for development of housing and proper support within the community to avoid the recurrence of, for example, what happened in Winterbourne, will the Minister explain how he is addressing this problem and who he is working with?
Norman Lamb
I applaud the right hon. Gentleman’s work on this, and it is very important that we make it very clear to the public that all of us share the ambition to get people out of institutional care when they do not need to be there. Actually, it is not about the lack of resources. The scandal is that, as a system, we are spending a fortune on institutional care when people could very often be much better cared for in their own communities. The good thing is that Simon Stevens, the new chief executive of NHS England, has shown a personal interest in this. I have discussed it many times with him. We have asked NHS England to produce an action plan by the end of August, demonstrating exactly how it will speed up the progress of getting people out of institutional care.
Learning Disabilities (Care in the Community)
Tom Clarke Excerpts(10 years, 4 months ago)
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Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
It is a pleasure, Mr Streeter, to serve under your chairmanship, and I am grateful to have been granted this debate. There are 1.4 million people with a learning disability in the UK and many require care and support to live full lives in their communities. Many do so, supported by families, friends, charities and funded social care. However, a small but significant number—just over 3,000—are far from their homes and communities, stuck in assessment and treatment units. They are some of the most vulnerable people in our society. Many display challenging behaviour and require skilled support from a range of professionals, but that is no reason why they should not be cared for and supported in their community.
In 2011, the BBC’s “Panorama” programme exposed truly horrific abuse and neglect of patients with learning disabilities at the Winterbourne View assessment and treatment unit. Many hon. Members will remember the deeply distressing images of people being hit, verbally abused, viciously restrained and thrown into seclusion. Some of the perpetrators were rightly sent to prison, but Winterbourne shone a light on the wider scandal of how the NHS and local authorities throughout the country have failed to give people the right support to enable them to live in the community. They had hidden that failure by sending people with learning disabilities to in-patient settings, in many cases for years and often hundreds of miles from their families and communities, isolated and alone. That was against Government policy and was a scandalous misuse of what assessment and treatment beds should be used for. It was estimated that the cost was around £500 million.
Kate Green (Stretford and Urmston) (Lab)
I am glad that my right hon. Friend is raising this important matter this afternoon. Does he agree that the situation, far from improving, may be worsened as a result of the closure of the independent living fund if it means that more learning-disabled people who are currently able to live independently are forced into residential care?
Mr Clarke
My hon. Friend makes a valid point and was right to do so.
Some £500 million of public money was spent to pay for people to be over-medicated with anti-psychotic drugs and kept in seclusion at risk of assault and self-harm. In December 2012, the Government put in place an action plan with the objective of giving people with learning disabilities support to enable them to move out of places like Winterbourne View and to return to their communities. A joint improvement programme was also put in place, and the NHS and local authorities were given a deadline of 1 June this year to make that happen.
The result is nothing short of a scandal. Not only has the deadline been missed, figures from the NHS show that more people are going into those units than coming out. Not only that, there seems little appetite to move people. Recent NHS data showed 90% had no discharge date. Meanwhile the human suffering continues. The learning disability census showed that 57% had experienced self-harm, an accident, physical assault, hands-on restraint or had been kept in seclusion.
Mr Andrew Smith (Oxford East) (Lab)
I, too, congratulate my right hon. Friend on this enormously important debate. Last Friday saw the first anniversary of the preventable death of Connor Sparrowhawk in the Slade unit in my constituency. One year later, we have not had the inquest or the serious case review, and his family are scrambling around to raise money so that they will be legally represented at the inquest where the public authorities will be represented at taxpayer’s expense. Does my right hon. Friend agree that more needs to be done to prevent such tragedies and, when they occur, to help the families and victims to see justice?
Mr Clarke
I agree entirely with my right hon. Friend. It was important that he put that case on the record.
The picture we are seeing is clearly unacceptable. Mencap, the Challenging Behaviour Foundation and Enable in Scotland have campaigned vigorously with the families of those affected, and I thank them for their advice for this debate. Many of the families have experienced the sheer pain of knowing their son, daughter, brother or sister has suffered horrific abuse and in some cases died. They have battled in many cases for years to get their loved ones out of these dreadful places, but have been blocked by an uncaring system that is often more focused on money than high-quality care and the rights and dignity of people with learning disabilities.
To mark the passing of the 1 June deadline, the families came together to write an open letter to the Prime Minister asking him to take urgent action and to meet them. I understand from them that to date there has been no reply. That is unacceptable and I hope the Prime Minister will look again at their letter and take the opportunity to meet them.
I had the privilege of meeting many of the families some time ago prior to my Adjournment debate back in autumn 2012, and more recently at last week’s all-party group on learning disability which I chair with Lord Rix, who has of course campaigned vigorously in this area. In common with all my colleagues, I cannot praise Brian more highly. I pay tribute to the families’ determination in fighting to change things for the better, not only for their loved ones, but on behalf of the thousands of others trapped far away in these places.
I turn to the case of Josh. The Wills family have campaigned for their son, and #BringJoshHome has caught the public interest, which we welcome. Phil Wills, his dad, spoke at the all-party group meeting last week and I know how moved everyone in the room was. Phil and Sarah’s son, Josh, lived in his family home in Cornwall with his siblings until July 2012 when his self-injurious behaviour increased. As a result, he was sent to a unit 260 miles away. Phil and Sarah reluctantly agreed to that because they were told there were no local services and it would be for a six-month assessment period to give everyone an understanding of the support and services Josh needed.
Almost two years later, Josh is still in Birmingham, a five-hour trip for his family. The Kernow clinical commissioning group continues to procrastinate and refuses to commission the services needed locally. Meanwhile, away from his family, Josh grows more anxious and his parents fear for his life because of the severity of his behaviour. He spent both his 12th and 13th birthdays there and has never met his newly born little sister.
I am very grateful to the Minister for his address to the all-party group meeting last week. I understand that he has met Phil and Sarah on more than one occasion and, to his great credit, many of the other families. I know he shares my deep concern over what has happened, and indeed, what has not happened. At the meeting, he shared his feelings about the lack of progress and the work he has been doing with NHS England, which has powers to intervene and address local failings. I say to him today that his views were very much appreciated.
I also welcome to the debate the shadow Minister, my hon. Friend the Member for Leicester West (Liz Kendall), and I welcome the contributions of my hon. Friend the Member for Stretford and Urmston (Kate Green) and my right hon. Friend the Member for Oxford East (Mr Smith). I look forward to what the Minister has to say, and in particular, I would like him to answer the fundamental questions that every family affected wants an answer to. Given that the June deadline has passed, what are he and other Ministers now doing, and what will the new deadline be? Where will the leadership come from across health and local government to ensure that we make progress?
It would be beneficial if the Minister could clarify the status of the joint improvement programme originally tasked with getting people back within their communities. Patently, that has failed and it has been dealt a further blow with the resignation of its director only yesterday. Are we to see a second joint improvement programme? Who will it consist of? How will it be successful? Critical to the solution, in my view, is also how we refocus money away from these high-risk units and into good-quality, locally based provision. If he could comment on that as well, I would be extremely grateful.
With regard to Scotland, it should be said that despite the Barnett formula, which means that 10% of the money spent in England is allocated to the Scottish Government, the widespread concern that is here in England also applies in Scotland. It is not helpful that Scottish data on these matters are poor, and that the £34 million allocated on the basis of the Barnett formula—arising from the committee that I chaired on disabled children and their families—was not spent on that purpose, but was used to keep council tax static. Scottish decisions on such placements can mean that placements out of area can also lead to placements out of Scotland. In one case, a man was sent to Carstairs, an NHS hospital for the criminally insane. He was later dispatched to Newcastle, where his elderly father finds the greatest difficulty in visiting him.
According to John White, the positive behaviour support adviser of Enable Scotland:
“The issue with assessment and treatment units can be that such environments can become the ‘setting conditions’ for people developing the challenging behaviours they are meant to be assessing and treating in the first place. We know from experience that people who had to live in NHS institutions for many years developed challenging behavioural repertoires in response to the experience of living in such environments and so it is logical that similar environments with similar institutional features are likely to encourage the development and maintenance of similar challenging repertoires.”
I would add that, important as it is, positive behaviour support is not a panacea and should be available as a part of a multi-agency health and social care collaborative approach. We need services to be designed around people, who along with their families, should have as much choice and control as possible. We need strong local crisis supports, staffed collaboratively by the NHS and local providers working in partnership, preventing hospital admission in the first place for all but those few people with a significant mental health problem that requires treatment.
For many years, we have been talking about care in the community, and there have been great strides. But the 3,250 people we are talking about today have been failed, let down by poor-quality or non-existent local services and then placed in high risk in-patient settings, where we have seen abuse, and tragically, loss of life. This is a national disgrace, and one that I hope right hon. and hon. Members from both sides will agree must be addressed decisively now.
I look forward to the Minister’s reply. I thank him for his presence, and I know he will share my view that these issues are crucial to the services that we provide, particularly in social services, remembering the rights of every individual citizen of this country.
Norman Lamb
I very much agree and I am grateful to the hon. Gentleman for that intervention. Providers of supported living care need to be much more central to the task of changing this culture. Indeed, I have asked for a meeting to be arranged that will bring in some of those providers, with Simon Stevens and the chief nursing officer, Jane Cummings, who I am pleased is now in charge of this programme, to demonstrate how they can play a part in effecting change.
I also want to acknowledge the work that has been done from the concordat and what has been achieved by NHS England and other delivery partners.
It is appropriate for us to start by looking at the people who were in Winterbourne View before it closed. I am pleased to report that NHS England’s Improving Lives team, who include senior clinicians, social care staff, third sector partners and family members of people with learning disabilities, have now reviewed the care of all but one of the 47 people who were in Winterbourne View, and the care of the one remaining individual will be reviewed by the end of this week. Those reviews have resulted in some people moving out of hospital into circumstances that are more appropriate for them as individuals.
The Government have provided funding so that the people who were in Winterbourne View can have additional trauma assessments where the need has been identified and they have consented to those assessments. We are providing additional funding to support families through a telephone helpline, regular telephone counselling and family support days. The funding will also support other people with learning disabilities—including the 17-year-old girl whom I visited a fortnight ago—who have experienced institutional abuse, and help their families.
Involving people with learning disabilities and their families is key to ensuring that the work that we are doing means that they have a better experience and better outcomes. We have provided funding to organisations to allow people with learning disabilities and their families to share their views with us, so that we can listen to them and respond to the concerns that they raise.
We have also made progress on other Winterbourne View concordat commitments. For example, guidance has been developed on commissioning advocacy for people with learning disabilities so that, again, they get a voice and they get access to information, advice and support when necessary. It is vital that local commissioners ensure that people have proper access to high-quality advocacy where they need it.
Mr Tom Clarke
I am very grateful for the Minister’s tone and I know that he feels deeply bound to respond to the problems that we are discussing. I welcome the fact that he mentions advocacy. Will he assure us that his Department will do everything possible to insist that advocacy remains at the heart of all our discussions?
Norman Lamb
I very much will do that. I have specifically talked to Simon Stevens about that. I am conscious that time is tight, so let me just mention one or two specific things. First, there is now movement on people getting plans for leaving institutional care. NHS England expects that clinical commissioning groups and its area teams will discharge or transfer 35% or 892 of the 2,615 people currently in in-patient settings within the next 12 months. That is 385 within three months, 266 within six months and 241 within 12 months. That is what they have come up with in terms of going through individual plans. We now have to ensure that it happens, and there is no guarantee in my mind that it will happen, so we have to hold the system to account.
I have mentioned that we have to unlock barriers wherever they exist. For me, one of the barriers is this. When someone transfers from the responsibility of NHS England to the local authority, the responsibility for the funding transfers to the local authority. That creates a disincentive for the local authority to take responsibility for that person, so the money has to flow with the individual. We have to ease the transition and not make money a barrier to an appropriate transfer to supported living in the community.
I have also mentioned that we have to address the question of the clinical judgments. That is not to say that in individual cases a clinician will not be making their best judgment about an individual’s need to stay in a particular setting, but surely the family need access to a second opinion to be able to challenge that judgment. I am conscious—I say no more than this—that the clinicians who are making the judgment are often employed by the organisation that is receiving payment for providing the bed to the individual. Whether it is in the state sector, the independent sector or the voluntary sector does not matter. The right to a second opinion is essential.
In the moments left to me, let me say that I remain totally committed to getting the culture change that we are all after. What has happened so far is not acceptable.
Care Bill [Lords]
Tom Clarke Excerpts(10 years, 8 months ago)
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Nick Smith (Blaenau Gwent) (Lab)
New clause 27 would establish an offence of corporate neglect. The problem needs to be tackled following police Operation Jasmine in south-east Wales. That six-year investigation of care-home abuse cost £11.6 million. Three care workers were prosecuted, but the owners—in my view, they were the real culprits—escaped punishment owing to legal hurdles. That is not acceptable. One patient had appalling sores. They were so infected that the bone underneath was visible. I was deeply shocked at the photographs of neglect I was shown from the case. The then deputy chief constable of Gwent police said:
“There is a likelihood that there are cases like this occurring every day…across the country”.
New clause 27 would ensure that care providers are in no doubt that their primary responsibility is the care of their residents. It is supported by Age UK and was recommended by the Joint Committee on the draft Care and Support Bill, which conducted pre-legislative scrutiny.
I accept that the Government’s proposals to strengthen the Care Quality Commission will go a significant way to preventing horrific abuses such as those at Winterbourne View, but without the offence of corporate neglect, the proposals do not do enough. In the Winterbourne View case, the longest sentence for a staff member—they pleaded guilty to nine charges of ill treating patients—was two years. That sentence is mirrored in other cases. It is only fair that an equal sentence is available in cases of corporate neglect.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
I have listened with great interest to my hon. Friend, as I did to the hon. Member for Bristol North West (Charlotte Leslie). Given that many such awful incidents involve people with learning disabilities, will he assure me that he has very much in mind their views as well as those of their advocates and families, and that they will be embraced by the legislation, particularly if his proposals are agreed to?
Nick Smith
I assure my right hon. Friend that the new clause refers to all adults, so takes on board the people he mentions.
Subsection (4) of the new clause seeks to strengthen protection. It would ensure that, if abuse were found to have an element of corporate responsibility, and if systems or the approaches taken by the care provider are a contributory factor in the abuse or neglect, the new offence would allow the prosecution of a registered care provider. The Government have the opportunity to shape the culture of the care sector in the Bill tonight.
Mr Dorrell
The hon. Gentleman knows that I do not entirely share his concern about who holds the share certificate for a particular service. I am more concerned about the accountability of a public authority for the use of public money to deliver a public service. On that, the hon. Gentleman and I are probably as one. I am also concerned that the system, from the perspective of the patient and service user, does not rely on them finding their way under their own steam through an impenetrable morass, but is designed with their needs and instincts in mind. That is a test that our current system simply does not pass and has not passed for many years.
Mr Tom Clarke
The right hon. Gentleman speaks with enormous authority on these matters. On the issue of community care, does he agree that for many years we have talked about joint planning, which is essential if community care is to be delivered? Does he feel that, even with the Bill and the proposed new clauses, the commission would have sufficient authority to ensure that it works as efficiently and sensitively as the House would expect?
Mr Dorrell
No, I do not believe that simply empowering the Care Quality Commission to go into that space is the answer to the question that I am posing. My right hon. Friend the Member for Sutton and Cheam (Paul Burstow) is closer to the right answer in identifying the health and wellbeing board at a local level as the beginnings of an organisation that can deliver a more joined-up commissioning process, joining up the social care system, the community health system, the primary health system and, of course, the hospital service—and I always add the social housing people. In a properly joined-up service, they would focus their attention on the needs of the individual patient service user—an awful piece of terminology; we cannot work out precisely what to call them.
I wish to highlight a bit of institutional tension. My right hon. Friend the Member for Sutton and Cheam proposes that this is a function for the CQC, but I am not entirely convinced. A tension underlying several contributions this evening relates to whether the CQC is the regulator of a provider, or an organisation with responsibility for charting the course, which I am looking for from the Minister, towards a new form of commissioning. The CQC has a full job to do responding to some of the things that my hon. Friend the Member for Bristol North West was talking about—culture and service quality on the provider side—and I am not persuaded that trying to manoeuvre it into the space of developing the kind of joined-up commissioning service I am describing is the right answer to that question.
Mrs Lewell-Buck
I will speak to amendment 19 and echo some of the excellent comments made by my hon. Friend the Member for Copeland (Mr Reed).
Amendment 19 would reinstate the Care Quality Commission’s duty to inspect the commissioning of adult social care services by local authorities. The case for the amendment is very simple: the quality of commissioning has a huge impact on the quality of care that people receive. It is extremely important that our adult social care system includes checks to ensure that commissioning is of a high standard. At present, this is not the case.
The current model of sector-led improvement introduced by this Government in 2010 leaves it to local authority peer reviews to identify failure. In practice, this means that neighbouring authorities that already work in close collaboration inspect each other, but only when a neighbouring authority volunteers for inspection. Of course, local authorities that are confident in their commissioning practices are happy to volunteer themselves for scrutiny, but what about those that do not volunteer? It is surely those authorities that we should be most concerned about, yet under the current system they are not subject to proper oversight. Worryingly, the majority of authorities have not been assessed under the peer review scheme. In total, 127 local authorities have not had their commissioning reviewed since 2010. We would not allow this type of reckless leniency with any other service that looks after our most vulnerable. I am certain that it should not continue.
It is clear that when it comes to inspecting local authorities’ commissioning practices, some uniformity and impartiality are needed. The CQC is best positioned to carry out that duty. Certainly, the chief executive of the CQC thinks so, commenting that he has not
“spoken to any national provider association who doesn’t think councils should be inspected”
and believes that
“the removal of that power from CQC was seen as a retrograde step”.
When this proposal was raised in Committee, the Minister insisted that it was unnecessary. He argued that CQC inspection of providers could identify patterns of poor commissioning that would be grounds for a special review.
Mr Tom Clarke
My hon. Friend is making a convincing case. I have a background in local government. Does she agree that if statutory obligations are placed on local authorities, it is important that that they should be followed by the appropriate resources, but that that is not always the case?
Mrs Lewell-Buck
I agree completely, and I will echo my right hon. Friend’s comments later in my speech.
I have some doubts about how effective CQC inspection of providers would be in practice. It is not clear at what point the CQC would recognise that poor provision was caused by poor commissioning practices. A handful of poor examples could be just that, or it could be evidence of a more systemic problem. Given the need for the Secretary of State’s approval before a special review is undertaken, I am concerned that the threshold of proof needed will be extremely high. Furthermore, CQC inspectors will not visit all providers in a single local authority area at the same time. In practice, it could take some months before information is collated and a pattern of failure detected that might indicate sub-standard commissioning. There is also a doubt about who will be joining up the dots to link months’ worth of inspections to a local area’s commissioning practices. In short, how will anyone ever know that poor providers are linked to poor commissioning by a particular local authority? The reality is that by the time the CQC recognises that there is a case for a special review, numerous safeguarding issues could have arisen.
I am concerned that, under the model the Minister advocated in Committee, action will be taken only once patterns of poor care have already taken root in a local authority. Surely that is the wrong way round. We need to prevent poor care arising from substandard commissioning, rather than wait for problems to become embedded in the system. This not only makes sense financially: from a safeguarding perspective, it is essential. I am concerned that without rigorous oversight, social care departments will find it easier to allow standards to slip.
In Committee, the Minister argued that the duty for local authorities to consider well-being would incentivise good practice. I do not believe that this is enough. I do not want to be critical of any local authority’s will to ensure the well-being of their service users, but I know from personal experience that these departments face intense pressure. If something is not built into the system, it is less of a priority. If departments know that the CQC will not be knocking on the door this year, they will concentrate on more urgent matters—trust me, in adult social care there are always urgent matters. Knowing that they are subject to regular oversight makes departments foster a culture of good practice.
In discussions I have had with providers and commissioners, they say they are in favour of reinstating the clause. Commissioners, whose day job is to fill gaps in services and to do so in the most cost-effective way, are worried that their decisions are not properly scrutinised, and that any mistakes they may unwittingly make will go unchallenged. Providers want it to be clear when they are at fault or when failure is down to poor commissioning. They do not want under-resourced providers to be punished simply because the rates that they receive from the local authority are too low to provide decent care.
I remain puzzled about why, although in June last year the Minister admitted that sector-led improvement had serious shortcomings for weaker-performing councils and, presumably because of his doubts, the Bill originally included the new clause, yet in October, for some reason, it was removed on Report in the other place, and the Minister has now moved from being in favour of CQC inspection of commissioning to being against it. I was also puzzled when the Minister repeated his concern about sector-led improvement in Committee. Following an intervention from the right hon. Member for Sutton and Cheam (Paul Burstow), he said that he shared the right hon. Gentleman’s view that
“the danger with sector-led improvement is that those bodies who are up for change and improvement take part and those who are dysfunctional and failing do not engage.” —[Official Report, Care Public Bill Committee, 28 January 2014; c. 442.]
Given that the CQC, providers and commissioners—along with the Minister— recognise the blind spots that exist in the sector-led improvement system, I hope that the Minister is open to convincing on the issue. If he is not convinced, I hope that he will be able to explain what he could not explain in Committee, namely why he and the Government changed their minds.
Norman Lamb
I take very seriously the point that the hon. Lady has raised, but if she will allow me to continue to present my argument, I shall be happy to return to it later if necessary.
The important new measures include an express duty to promote people’s well-being—a duty to shape local care markets to ensure that they are sustainable and diverse, and offer high quality care and support. The Department will work with the local government and adult social care sector to produce statutory guidance on local authority commissioning of care and support. However, a CQC review of commissioning remains an option. I reassure right hon. and hon. Members that we will review evidence of concerns about local authorities’ commissioning practice to establish whether it is appropriate to ask the CQC to undertake a targeted review under section 48 of the Health and Social Care Act 2008. Getting the message out to commissioners that the powers will be used is important in itself to concentrate minds. They will be under the spotlight if they fail in their commissioning responsibilities.
New clause 12 would require the CQC to consider integration of care as part of its performance assessments of registered providers of health and adult social care. In Committee, my right hon. Friend the Member for Sutton and Cheam made a strong case for the new system of performance ratings to be carried out by the CQC to look at care pathways, rather than focusing on separate institutions in isolation. He makes a very good case. I explained that a central tenet for the Government is that the independence of the CQC improves its effectiveness as a regulator. Clause 89 removes nine separate powers for the Secretary of State to intervene in the day-to-day workings of the commission, and we have deliberately removed the Secretary of State’s power to devise or approve the system for performance assessments and ratings.
The CQC has to be responsible for the system of performance assessment that it introduces, and placing specific requirements on the commission in legislation would not help in that regard. That is not to say that the CQC should not look into the integration of care. I told the Committee that I would pursue that matter in my discussions with the CQC, and I have done so. I have spoken to the CQC chair, David Prior, and to the chief executive. I am pleased to say that in that regard we are pushing at an open door. They absolutely understand the case that my right hon. Friend makes.
In recent weeks, the commission’s chief executive, David Behan, has set out plans for the CQC to carry out thematic inspections to look at the care pathways for different conditions. One such thematic programme will look at how people with dementia are handled by relevant services in a geographical area—acute health care, primary health care and adult social care, for example. Another is looking at how people move across transition points, such as when a disabled child becomes an adult—a point at which too often services fall down.
Mr Tom Clarke
The Minister has outlined that he wants to work with the commission, local authorities and others in these important matters. Does he agree that there are issues on which organisations such as Mencap have a lot to contribute? Would he see the Government’s approach on those matters as being inclusive in that respect?
Norman Lamb
I totally agree with the right hon. Gentleman. The more that we talk to organisations with expertise such as Mencap when we are designing the commissioning and inspecting of facilities, the better we are at the job that we do. We must not think that we have all the answers in Whitehall.
A future thematic review could consider the integration of health and social care services either in a particular location or across a particular condition. I am keen that the commission pursue that further, but, as I say, I think that we are pushing at an open door in that regard.
New clause 33 would create the new post of candour commissioner for England. The commissioner would be tasked with protecting and promoting a culture of candour and disclosure in the health and social care sectors, an ambition that I think we would all share. The Government are taking steps to make a culture of candour and openness a reality. We will put in place a statutory duty of candour on providers registered with the CQC—I am personally delighted that we are doing that. That will require providers of health and social care to be open with patients and service users where there are failings in care.
I commend to the House the excellent review of the duty of candour by Professor Norman Williams and Sir David Dalton, which was published last week. We will consider the recommendations of the review—I repeat that I thought it was excellent—as we develop regulations to implement the duty of candour as a requirement for registration with the CQC. We are also enhancing the professional duty of candour through changes to professional guidance and codes.
Effective whistleblowing and complaints systems are vital parts of an open and transparent culture. As the Committee Chair, my right hon. Friend the Member for Charnwood (Mr Dorrell), pointed out, what we are after is a system in which whistleblowing is no longer necessary because the culture is open. That will help to improve public and patient safety and the quality of services provided.
This Government support the right of staff working in the NHS to raise concerns and expect all NHS organisations to support staff who wish to do so. NHS organisations have to have in place policies that are compliant with whistleblowing legislation. Also, the CQC’s new inspection system will include discussions with hospitals about how they deal with whistleblowers, and the CQC is reviewing its arrangement for handling whistleblowing concerns. The CQC’s national adviser for patient safety has recently established, and chairs, a forum of whistleblowers, so the CQC understands the issue and recognises its central role in this regard.
I am sure that my hon. Friend the Member for Bristol North West (Charlotte Leslie) will agree with me that we will only achieve the change in culture that we are seeking by creating champions for candour and openness throughout every tier of every organisation—people who really believe in openness in both health and adult social care. Promoting and protecting candour is the business of every member of staff in health and social care. Indeed, the Dalton-Williams review prefaced its discussion of the candour threshold with a clear recommendation to establish a culture of candour based on training and support of staff and more accurate reporting of safety incidents.
I would also point out that the creation of a new office of candour commissioner would need funding. Given the measures we are already putting in place to support candour, I am not convinced that a candour commissioner would be the best use of finite resources.
New clause 28 would require the Secretary of State to commission an independent review of whistleblowing arrangements within six months of this Bill coming into force. I recognise that reviews, as suggested in this amendment, can play a key role in ensuring that legislation is operating as intended—a form of post-legislative scrutiny. It is for this reason that the Government, through the Department for Business, Innovation and Skills, have recently carried out “The Whistleblowing Framework: Call for Evidence”. This call for evidence is part of a review of the effectiveness of the legislation around whistleblowing, specifically considering whether the protections available in the Public Interest Disclosure Act 1998 for those wishing to raise concerns are effective. Members of the public and experts have been asked to submit evidence to BIS’s review. The findings will be published this spring. My Department has submitted evidence to this review on behalf of the health and care sectors, having taken the views of the professional regulatory bodies, but I do not support putting a commitment in primary legislation to undertake a review such as the one suggested in the amendment.
New clause 10 relates to the single failure regime for NHS trusts and foundation trusts. I repeat the assurance given in Committee that where the chief inspector of hospitals finds that patients are exposed to an immediate risk of harm, he will continue to be able to take swift and decisive action under section 31 of the Health and Social Care Act 2008. This new clause would prevent the CQC from being able to trigger trust special administration on quality grounds while it was using its powers under section 31. The chief inspector needs to be able to draw on the full range of the CQC’s powers to ensure regulatory action is appropriate in each case. We must not set unnecessary constraints on the CQC’s ability to address failings in quality. There may well be situations where the CQC needs urgently to suspend a particular service and also to consider trust special administration to ensure that high quality services can be sustained.
Let me make it clear that the CQC will be able to trigger trust special administration only where there has been a serious failure of quality and it is appropriate to do so. There are a number of ways to support trusts to improve, ensuring that special administration is only the last resort. Monitor and the NHS Trust Development Authority have a range of intervention powers and can also place trusts and foundation trusts in special measures to provide a package of measures to support improvement.
Care Bill [Lords]
Tom Clarke Excerpts(10 years, 11 months ago)
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Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
I apologise for not having been in the Chamber for most of the debate, Mr Deputy Speaker, because of other parliamentary activities. I have found the speeches that I have listened to of enormous interest and I wanted to speak in the debate given that I am the co-chair, with Lord Rix, of the all-party group on learning disability.
I felt I owed it to Mencap and the Care and Support Alliance to, at the very least, bring out some of the points that were made in the other place, not least by Lord Rix and Baroness Hollins. Those points are dear to me, as I followed the debates in the other place carefully. I welcome the fact that we have a Bill and that we are having debates. I do not want to be too critical of the Government—not just because it is the festive season—but we have talked about many of these issues for a long time. When I read what was said in the other place, I reflected that when we talk about carers we all share compassion for and concern about their role, but that that has been the case for as long as I have been a Member of this House. I can understand that some carers are perhaps becoming a little sceptical and cynical and if we can do something about the Bill, that might perhaps help us along the way.
Above all, I want to speak about advocacy. In the Lords, the Government tabled welcome amendments that introduced a right to advocacy in respect of social care assessments and for some of those involved in safeguarding inquiries for some people. That has the potential hugely to improve the process for people who would otherwise struggle to be involved in the assessment and care planning process. It also provides real rights and protection for those who are suffering abuse such as that at Winterbourne View and Mid Staffordshire, and I hope to have time to return to that later.
Furthermore the measure builds, if I may say so, on the principles of the Act that I was privileged to pilot through this House, the Disabled Persons (Services, Consultation and Representation) Act 1986. Those who are still around from that period will recall that advocacy was at the heart of what the Act sought to achieve. The demand for that advocacy is still there today. Advocates support people to articulate their needs and to make informed choices, and they make the process less intimidating. They support planning and reviewing care and help people to speak out if they are dissatisfied with care or when safeguarding issues arise.
Those who receive the support of an advocate will undoubtedly be better able to engage with the range of professionals and service providers with which they come into contact, and as a result they are more likely to experience positive outcomes. Although the Government’s amendments were welcome, we seek clarity in a number of areas. I know that this view is shared by Mencap and many other organisations, although I do not necessarily speak for all of them.
The Bill deals with facilitating involvement, for example. The clause on advocacy and safeguarding states:
“The relevant local authority must…arrange for a person who is independent of the authority (an ‘independent advocate‘) to be available...for the purpose of facilitating his or her involvement in the enquiry or review”.
It is not clear what
“facilitating his or her involvement in the enquiry or review”
means and whether it is constrained in any way or subject to some form of arbitrary decision. Perhaps the Minister might clarify that tonight.
Timely advocacy at the start of safeguarding inquiries seems to me to be essential. There have been countless examples of serious abuse and neglect affecting people with a learning disability which have been overlooked for a host of reasons. It is vital, therefore, that a person with a learning disability receives the support of an advocate at the early stages of a concern being raised, and local authorities must take this into consideration. Mencap is concerned that the local authority needs to arrange advocacy only if it is not satisfied that there is an appropriate person to represent and support the adult with a learning disability. It would like assurances from the Minister that this will not become a default position for family or friends.
Some family members may in some cases have the skills and the background to be an effective advocate and may wish to do so. Others, however, will be unable or unwilling to do so, and Mencap thinks it would be highly inappropriate if those family members felt pressurised so to do. Good advocacy is delivered by individuals skilled and knowledgeable in delivering appropriate, independent and empowering advocacy, and the local authority should ensure that this is the case.
I turn to the issue of abuse. Some time ago, after the Winterbourne report, I secured a debate in Westminster Hall and I am very glad that that matter was then discussed. As the Bill makes its way through the House, we have to deal specifically with the definition of abuse. The Bill needs to be strengthened. Only financial abuse appears and is defined on the face of the Bill. This seems to give prominence to one form of abuse, although others clearly take place. Lord Rix and Baroness Hollins tabled amendments in another place which sought to strengthen the clause and include other forms of abuse, such as neglect, which we know is more prevalent, and also physical, sexual and psychological abuse and so on.
Responding in another place, the Minister felt that abuse was a commonly understood definition and that defining it further in the Bill might restrict the scope of local authorities’ duty to inquire. Although Lord Rix agreed with the argument that a long, exhaustive list would be unreasonable, he said surely we must ensure that
“local authorities do not suddenly think that only financial abuse is to be considered when they look at this Bill”.—[Official Report, House of Lords, 14 October 2013; Vol. 748, c. 341.]
I believe that reference only to financial abuse is unbalanced and critically makes other forms of abuse appear less relevant or important. Again, recalling the recent institutional abuse and neglect highlighted by Winterbourne View, Mid Staffs and the confidential inquiry into the premature deaths of people with a learning disability, it is crucial that other forms of abuse are set out in the Bill. They may be covered by guidance, but evidence has shown that this has not protected people with a learning disability who may well be subject to multiple abuses. I agree with the Government that an exhaustive list might be wrong and difficult to defend. However, the Bill should be amended to include reference to physical, sexual and psychological abuse, as well as neglect. It can make further reference to “other as guidance may specify”.
I am delighted to have had the opportunity to take part in the debate. We have a lot of work to do. I have great regard for the Minister who is responsible for the Bill and I think he will do a very good job, but when we look at issues like assessment, choice and the rest, we must remember that we have given promises before and we have given commitments. This time we all hope they will be real and meaningful.
Hepatitis C (Haemophiliacs)
Tom Clarke Excerpts(11 years ago)
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Paul Goggins
I am grateful to my right hon. Friend and I agree with him entirely. There needs to be not only a review of the current financial arrangements, but a deeper search for the truth, to bring justice, an explanation and a profound apology to those who have suffered. I will make some remarks about that later.
I will not dwell this morning on the long history of the injustice, other than to remind the House that of the 4,670 people with haemophilia who were infected with hepatitis C or HIV, at least 1,757 have died from the effects of the viruses; I say “at least” because the number is almost certainly higher than that. Although it was recognised at the time that the use of imported blood products carried a very high risk, treatment continued and patients were simply kept in the dark. As people tried to get to the truth, they were met with a lack of honesty and deep disrespect. Their dogged persistence is remarkable.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
I congratulate my right hon. Friend on his excellent speech, the work he has been doing and obtaining the debate. I know that the debate and the figures he gave relate mainly to England. His late friend and mine—his predecessor, Alf Morris—would be proud of the work he is doing.
Would my right hon. Friend allow me to introduce one Scottish aspect to the discussion? In Scotland, the Penrose inquiry is taking evidence on a wider range of issues than has so far been possible in this House, including about what steps were taken to protect the public, given the clinical knowledge available at the time. Without delaying the action for which he urgently calls, would he take that on board and would the Minister reflect those views?
Paul Goggins
I am grateful for my right hon. Friend’s intervention. He is a fine campaigner on a range of issues, but on none more so than this. He did great work with my predecessor, the late Alf Morris. I referred to my 16 years of campaigning with Fred, Eleanor and Peter, but I was, of course, only picking up the baton; Alf had worked with them tirelessly for many years.
My right hon. Friend raises a pertinent point about Penrose, because when he reports no Government will be able sit back and do nothing. Profound questions will be posed by that report and they will apply every bit as much here as they do in Scotland. I am grateful to my right hon. Friend for his timely reminder.
In January 2011, two years after the independent inquiry led by Lord Archer of Sandwell, the Government concluded a review of the support available to those who had been infected with hepatitis C and HIV. Along with others, at the time I welcomed the additional lump sum and annual payments to those infected with hepatitis C who had reached the so-called stage 2—essentially, where cirrhosis has been diagnosed. Other improvements were made, but it was clear to many of us from the outset that for the vast majority nothing would change; they would continue to suffer without the help they needed and were owed. That suffering is deepened by the confusing arrangement of the funds that are meant to help them.
In April, the Minister’s predecessor attended a meeting of the all-party group on haemophilia and contaminated blood. I see a number of right hon. and hon. Members here who were present at that meeting; they will remember that it was fairly stormy and that a range of views were expressed about the funds. Those present will remember what was said. I made a note of some of the comments: “It is utterly bizarre....so many funds”; “a nightmare of bureaucracy”; “something is badly wrong”; and “it is not acceptable to have to go cap in hand”. Those comments were all made by the Minister’s predecessor, leaving those who attended wondering why she had not come to the meeting with solutions rather than joining in the chorus of criticism.
My constituents want one fund for haemophiliacs with hepatitis C, essentially bringing together those parts of the Skipton Fund and the Caxton Foundation that currently administer the limited financial support available. They believe that that would reduce bureaucracy and, more importantly, enable those who manage the funds to increase focus on their specific needs. Although they acknowledge others’ needs, they want and are entitled to a better response than they currently receive.
Within the new fund, the immediate priority should be a complete overhaul of the stage 2 assessment. Currently, the lump sum and annual payments start only after hepatitis C has caused cirrhosis. Three out of four people registered at stage 1 do not progress to stage 2, even though they, too, experience extreme and severe symptoms, including great fatigue and often painful bleeds.
The discrimination between those at stage 1 and stage 2 has been brought home to me through my constituents’ experience. Over the many years I have known Peter Mossman and Fred Bates, I have seen them on good days and bad. I have seen them in pain and distress, but I am aware that their most painful moments have been at times when I have not seen them, because they have not been able to get out of bed and out of the house. They suffer similarly, but one of them is at stage 1 and one is at stage 2.
The discrimination is as incomprehensible as it is unjust, and it has enormous consequences. Those at stage 1 receive a one-off payment of £20,000; those at stage 2 receive an additional £50,000 lump sum plus an annual payment, which is currently £14,191. The Minister should scrap this crude distinction and urgently consider implementing a wider assessment of the health and well-being of each individual. The payments are intended to help people cope with the difficulties that they face, and more should benefit from them.
Jane Ellison
My hon. Friend makes fair points. I spent much of the past three years chasing him in his previous role to put right a continuing historical wrong, and he is right to push me in the same vein. I take his remarks, as I have always taken his advice and thoughts, extremely seriously, and will reflect on them.
I want quickly to mention the Penrose inquiry, of which I am very aware. As the hon. Member for Kingston upon Hull North said, it will report in the spring. Right hon. and hon. Members may be interested to know that the Department of Health has provided all reasonable assistance to Lord Penrose, explaining what documents are held in the Department.
Jane Ellison
May I continue, as I fear I will not get through the remaining points? I will be happy to speak to the right hon. Gentleman straight after the debate.
We have made available to Lord Penrose any additional documents that he has felt are necessary to his inquiry. While it is continuing, I shall not comment on the inquiry or evidence given to it, but I shall consider whether the Department will make a response. Given that Lord Penrose is considering pre-devolution matters, it is hard to imagine that there will not be implications to which I and the Department shall need to respond. We do not know the exact shape of things, but the inquiry is on my radar, and we shall be considering it.
The hon. Member for Easington (Grahame M. Morris) made a point about specialist hepatitis C nurses. That is the responsibility of NHS England, and I undertake to write to that body to draw its attention to his comments.
I think that I have now covered most of the specific points that I can answer today; unfortunately, I cannot respond to some of the detailed points. There was a challenge about the number of Skipton Fund stage 1 beneficiaries; there are difficulties in identifying the numbers, but we will examine that issue and see whether we can respond in more detail to the challenge given by the hon. Member for Kingston upon Hull North.
Inevitably the debate has been, for me, an invaluable opportunity more to hear some of the arguments than to give specific answers on the important points that colleagues have raised so well on their constituents’ behalf. I am happy to have the meetings that have been suggested.
Oral Answers to Questions
Tom Clarke Excerpts(11 years ago)
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Mr Speaker
Order. I told the Secretary of State privately before, and I say it publicly now, that if he intends to devote part of his answer to talking about what happened under the previous Government, he can abandon that plan now and resume his seat. I suggest he resumes his seat.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
As part of this openness and transparency, will the Government improve their relations with the police and prison services, so that we can have a clearer idea of why people with mental illnesses are spending time in police cells or being sent to prison?
Mr Hunt
I am pleased to tell the right hon. Gentleman that we are working closely with the police to try to ensure that some of the people held in police cells are given much faster access to mental health services. That includes a street triage pilot, which has had early and promising results.