Penrose Inquiry

Diana Johnson Excerpts

Thursday 26th March 2015 Commons Chamber

[Diana Johnson (Kingston upon Hull North) (Lab) (Urgent Question)]

To ask the Secretary of State for Health to make a statement on the publication of the Penrose inquiry and its implications for the United Kingdom Government.

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

Yesterday the Prime Minister issued an apology for these tragic events on behalf of the Government, and my right hon. Friend the Secretary of State for Health laid a written ministerial statement as an interim response to the Penrose inquiry.

As the hon. Lady knows, this was a Scottish public inquiry. I understand that Scottish Ministers will not make a statement to their Parliament until this afternoon, and it would therefore be inappropriate for me to comment on the report in detail at this stage. However, I can say that Lord Penrose reviewed more than 118,000 documents and more than 150 statements from patients and relatives, and also took oral evidence from many of the officials who were involved in decision-making at that time. It seems to have been an extremely thorough job, and it has provided the first authoritative narrative of these events.

During the Back-Bench debate in the House on 15 January, I said that the Government would make an interim response to Lord Penrose’s report—which appeared yesterday, in the form of the written ministerial statement—and that it would be for the next Government to consider a more substantive response once they had had time to examine the findings of the inquiry.

Yesterday we announced that the Department of Health would allocate an additional one-off amount of up to £25 million from its 2015-16 budget to support any transition to a different system of financial assistance. We intended that announcement to provide an assurance for those who have been affected by these devastating events that we have heard their concerns and are making provision to reform the system. As the hon. Lady knows, we had hoped to consult during the current Parliament on reform of the ex gratia financial assistance schemes, and I very much regret that our considerations on the design of a future system of financial assistance for those affected were postponed while we awaited the publication of Lord Penrose’s final report.

The Prime Minister also said yesterday that if he was still Prime Minister after the election in May, his Government would respond to the findings of the report as a matter of priority.

[Diana Johnson]

Thank you for granting the urgent question, Mr Speaker. I thank the Minister for her response.

As we know, the contaminated blood scandal was the biggest disaster in the history of the NHS. Today we should again remember all those who contracted HIV and hepatitis C, and their families. For them, this is not an historical issue, but an ongoing tragedy which continues to have a devastating impact on their lives.

I am pleased that the report of the Penrose inquiry was published yesterday, after six years. It runs to five volumes and 1,800 pages, and it appears to document accurately the tragedy, how it came about, and the decisions that were made at the time. However, I share the surprise and disappointment of those affected that the report makes only one recommendation. I know that, for that reason, yesterday was a very difficult day for many people.

The Prime Minister’s apology on behalf of the United Kingdom Government represents a significant moment in the long struggle for recognition of the scale of the tragedy, and it is very welcome, but what we need is a proper system to support and compensate all those who are affected. The report that was published a few weeks ago by the all-party parliamentary group on haemophilia and contaminated blood shows that the current system is simply not meeting the needs of those whom it is meant to help, and is not fit for purpose. I should like to hear a reassurance from those on both Front Benches that, whichever party forms the next Government, swift action will be taken to provide a permanent support and compensation settlement. I should also like to be reassured that it will be specifically stipulated that the £25 million which was announced yesterday should go directly to the beneficiaries, rather than the trusts and funds deciding what to do with it.

This is not the end of the matter. As the Minister knows, a large number of Members on both sides of the House will return to it after 7 May, and will hold whoever is in power to account when it comes to sorting out this tragedy.

[Jane Ellison]

The hon. Lady is absolutely right to say that this is an ongoing tragedy, and that, as I said in my statement, many people’s lives have been devastated and continue to be severely affected. I pay tribute to her and to other members of the all-party group, including my right hon. Friend the Member for North East Bedfordshire (Alistair Burt), who cannot be present today but who has spoken to me in the last couple of days, since the publication of the report. Indeed, I pay tribute to all the Members who have represented their constituents so ably and passionately over many years.

As the hon. Lady said, the next Parliament will return to this issue. I was very open with Members during the Back-Bench debate on 15 January, and the hon. Lady knows that I am frustrated by the fact that we were not able to do more in the current Parliament. It is a matter of record from that debate that I spoke with Scottish Government Ministers in spring 2014 in anticipation that we would have an earlier report from the inquiry and that we might be able to move forward.

In response to the specific points the hon. Lady raised, let me reiterate something I said in my initial remarks: the one-off amount of up to £25 million is to support any transitional arrangements to a different system of financial assistance. That is intended to provide assurances to those affected by these devastating events that we have heard their concerns.

Oral Answers to Questions

Diana Johnson Excerpts

Tuesday 24th February 2015 Commons Chamber

[Mr Speaker]

Ms Johnson, do you have a similar question?

[Diana Johnson (Kingston upon Hull North) (Lab)]

21. Yes, Mr Speaker; I am grateful. I want to ask about the number of nurses who have been made redundant. Lots of hospitals in my area are now recruiting from Spain, and I wonder whether an assessment has been made of the cost to the NHS of using nurses from abroad after making other nurses redundant.

[Dr Poulter]

Our NHS has always benefited from overseas staff bringing their skills and coming to work here, and we can all welcome that as long as they have a good standard of spoken English, which is something that we are putting right through the legislation that we are introducing. As I outlined earlier, there are now around 7,500 more nurses, midwives and health visitors working in the NHS than there were under the previous Government.

Francis Report: Update and Response

Diana Johnson Excerpts

Wednesday 11th February 2015 Commons Chamber

[Mr Hunt]

Yes, and I remember the conversation I had with the hon. Gentleman about that issue. I will look into the case carefully. I am not saying that the NHS culture is changing today, because I think it is a very long journey. That is why it is important to have cross-party agreement. This is something that will take decades to happen. If we look at the best hospitals in the world, in England or abroad, we find that they get their culture right over decades. We must understand that. Breaking down those silos, putting patients first and making sure that that is not compromised, whatever the external pressures—that is the heart of the matter.

[Diana Johnson (Kingston upon Hull North) (Lab)]

When Pauline Lewin, a whistleblower, came forward in Hull to raise concerns about the then chief executive, Phil Morley, she found herself subject to hostility and bullying and has not been able to return to work—despite corroboration from a damning Care Quality Commission report, an ACAS report that established bullying and an independent KPMG report on financial irregularities. Meanwhile, the chief executive has moved on to another such post, earning £170,000 a year. I listened carefully to what the Secretary of State said—that he was “calling time on bullying…and victimisation” in the NHS—so will he reassure me that that will apply to this case, which his Department is currently investigating?

[Mr Hunt]

I remember the good meeting I had with the hon. Lady and the former Secretary of State about that issue, which we are looking into. I hope she will understand that it would not be right for me to comment on that individual case, but let me say that it seems to exemplify exactly how things have gone wrong. That is why we need to look into it very carefully. We need to create a culture through which the management actually want to listen to their staff. I do not want managers to do so because of something I say; I want them to feel that they want it happen. It is as much about making sure that organisational priorities are correctly set from the centre, as it is about changing the law.

Child and Adolescent Mental Health Services

Diana Johnson Excerpts

Monday 2nd February 2015 Commons Chamber

[Norman Lamb]

If the diary allows I am certainly up for that, and I pay tribute to the hon. Lady for the work she has done in her county in trying to improve children’s mental health services. We must do that across the country, and there are many examples of real and significant improvements.

[Diana Johnson (Kingston upon Hull North) (Lab)]

We are discussing young people, and Natalie Carmichael has e-mailed me. She is 17, lives in Hull and suffers from anorexia nervosa, yet she had to go to Manchester—more than two and a half hours away—to access 24-hour care. She states:

“The illness itself is distressing enough…but I feel it made it ten times more traumatic the fact that I was hundreds of miles away from home and I couldn’t reach to my family for comfort and support in the tough experience I was battling.”

What does the Minister say to Natalie?

[Norman Lamb]

I find it as intolerable as she does, and that is why we are investing to improve access to beds in the locality. Indeed, we identified the hon. Lady’s region as an area where there were shortages of beds for children and young people’s mental health, and we have taken action to increase that number.

NHS Major Incidents

Diana Johnson Excerpts

Wednesday 28th January 2015 Commons Chamber

[Mr Hunt]

I will take no lessons in stamping out news stories on poor care because I am worried about the impact on reputation. That is what happened when the shadow Health Secretary was behind my desk, and it was totally unacceptable. That is why we had a clutch of hospitals where poor care was swept under the carpet year in, year out because a Labour Government did not want bad news to come out in the run-up to an election. It was a disgrace and this Government are putting it right.

[Diana Johnson (Kingston upon Hull North) (Lab)]

Two weeks ago I asked the Secretary of State about a comment that had been made to me by a senior clinician in Hull that the trust in Hull at Hull royal infirmary had been on internal major incidents on and off since December. The Secretary of State told me that that was not really an issue and that it was down to the trust, but the documents that have been produced today show that the real reason is that it is politically much more expedient to have an internal incident than to declare one externally and get all the bad publicity and reputational risk mentioned in the document to which my right hon. Friend the shadow Secretary of State referred to. That is the case, is it not?

[Mr Hunt]

Let me make two points to the hon. Lady. When I talk to the House about the number of major incidents, we make no distinction between internal and external incidents. We talk about them all as major incidents. There is no benefit, if one looks at it in that way, to Ministers from it being either an internal or an external incident. What matters is the right thing for patients. Rather than trying to politicise the issue and turning it into a political football, the Opposition should listen to Dame Barbara Hakin, chief operating officer of the NHS, who said clearly today that the decision was nothing to do with Ministers, they did not know about it and it was not taken at the request of Ministers. Labour should concentrate on supporting the NHS where it could do with its help—in Wales today.

NHS (Government Spending)

Diana Johnson Excerpts

Wednesday 28th January 2015 Commons Chamber

[Diana Johnson (Kingston upon Hull North) (Lab)]

I have been a Member of Parliament for nearly 10 years and I have never had so many complaints about the NHS as I have received in recent months. In a recent survey that I carried out, more than 35% of people who responded had had to wait more than a week to see a GP. I have seen many parents who are concerned about the length of time they have waited for their children to receive a diagnosis of autism, or to get an appointment with child and adolescent mental health services. Our four hour-target rate at A and E in Hull stands at about 74.9%, which is one of the lowest in the country. We also have very high levels of cancelled operations.

We now have a new chief executive, who is doing his very best, with a dedicated team of front-line staff, to deal with the pressures on A and E, and I want to pay tribute to them for their work. However, what I really wish to focus on in this short contribution is a report on financial irregularities, which has been published on the front page of my local newspaper today. It concerns the regime that existed under the former chief executive of Hull Royal Infirmary, Phil Morley, who left the hospital very suddenly last April, just before the publication of a very damning report by the Care Quality Commission, which outlined concerns about bullying, staff shortages and the care that was being provided at the hospital. Within a few months of his leaving and the damning report, he turned up as a chief executive at the Princess Alexandra hospital in Harlow, earning—I found out from a freedom of information request—£170,000. The report published this morning is a leaked report, but I want to read this out, because I am sure that all hon. Members will be concerned to learn what has happened to NHS money:

“In a draft report leaked”

to the Hull Daily Mail

“external auditors KPMG, called in to investigate financial concerns, said there was ‘an undeclared conflict of interest’ between Mr Morley and chief operating officer Amanda Pye. The NHS watchdog for hospital trusts was asked to consider calling in a team involved in examining financial irregularities and suspicions of fraud ‘due to the seniority of staff involved and potential conflicts of interest’.”

That included—I am sure that hon. Members will be concerned about this—payment for a sunset cruise on a luxury yacht in 2012 for Mr Morley and senior members of his management team in Florida. It also says:

“Mr Morley amended draft minutes from a committee set up to approve salaries and additional payments to staff”.

This includes a payment made for a relocation allowance, when there was no relocation, and the person ended up having to pay £8,000 back to the trust. As I have said, there was a conflict of interest between Mr Morley and a senior member of his team.

This has all come to light as a result of the investigative journalism by Allison Coggan at the Hull Daily Mail and by Vicky Johnson at the local BBC. I think it is shocking that the chair of the audit committee, when asked on television by Vicky Johnson why she had not challenged what the chief executive was doing, said that she was scared to challenge him. This is NHS money, and we know that every penny counts. I have raised this on the Floor of the House with the Secretary of State. Initially, he said that there was nothing he could do about it, so I wrote to him and received a letter from the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich (Dr Poulter), saying that there was nothing that could be done. Finally, we had a meeting with the Secretary of State, who has arranged for the Trust Development Authority to investigate what was going on in that trust.

It is of concern to many hon. Members and to me that where there are financial irregularities in the NHS, it seems that chief executives can move from one trust, having made a mess of things, straight into another job. It seems as if they are protected, which it is fundamentally wrong when it is NHS money—public money. My constituents will certainly be worried about the story on the front page of today’s Hull Daily Mail, and the fact that this individual is still in a post paid for by the NHS in another part of the country earning a lot of money. I hope that the Minister can reassure me that the TDA will do a thorough and proper investigation into what went on in that trust, because it is not acceptable that this man still holds a chief executive position.

National Health Service

Diana Johnson Excerpts

Wednesday 21st January 2015 Commons Chamber

[Mr Hunt]

I will make some progress because I want to answer some of the questions asked by the right hon. Member for Leigh. One reason for the pressure I have outlined is that people increasingly expect to get medical care 24/7, just as they are able to bank, shop and book their holidays 24/7. The NHS cannot be King Canute and try to stop that—I am not blaming patients, but that is how patient expectations are changing, and we need to give them better alternatives to turning up in A and E.

Over the past two years, we have expanded weekend and evening GP appointments for more than 5 million people. We have also rolled out the 111 service, which now handles—these are the facts—three times more calls every year than its predecessor, NHS Direct. The right hon. Gentleman criticised 111, so let us look at the facts. Of those who call 111, 30% say they would have gone to A and E but decided not to as a result—that is 2 million journeys to A and E and around 600,000 ambulance call-outs avoided because of 111. Unlike NHS Direct, one third of all 111 centres can now access a summary of people’s GP records, and that will apply to nearly all 111 centres this year. Not only can people talk to a doctor or nurse, as they did with NHS Direct, but if they give consent they can do something that they could never do under NHS Direct and talk to someone who knows about them and their medical history.

Another big challenge facing A and Es is the increasing complexity of the illnesses that people are presenting with, including many older people with conditions such as dementia, diabetes or asthma. Such people often end up being admitted to hospital rather than treated and sent home, and that is not just challenging for the system; it is often wrong for the individual. A busy A and E can be the worst possible place for a frail, older person with dementia, which is why in our vision for the NHS every vulnerable person has a doctor who is continually responsible for their care, whether or not they are in hospital, and who ensures that they have proper care wrapped around them, thereby reducing the likelihood of emergency hospital admissions. Too often, that does not happen. Too often, the buck stops with no one. That is why, this year, we reversed the 2004 decision and brought back named GPs with personal responsibility for everyone aged 75 and over. That is helping 4.5 million people. With 800,000 of the most vulnerable people, we are going even further, giving them guaranteed rights to prompt and proactive care from their GP.

On social care, for too long, some of the most vulnerable people in our country have suffered from disjointed care with NHS and social care systems that, rather than talk to each other, constantly try to pass the buck. For the first time from this April, we have required all local authorities and NHS organisations to work together to plan care in a joined up and seamless way, as part of the better care programme.

[Diana Johnson (Kingston upon Hull North) (Lab)]

Will the Secretary of State give way?

[Mr Hunt]

I am going to make progress.

When that happens, we should see, for the first time ever, not an increase but a reduction in emergency hospital admissions. For patients, that will mean something important: a doctor or nurse will be in charge of every person in the social care system; medical records will be shared, so that people get safer and more joined-up care; and joint teams will work together across the NHS and social care systems, rather than the silos and boundaries that have plagued the system till now.

The Government have never pretended that the challenges facing the NHS are straightforward, but with more doctors, more nurses, more operations and safer care than ever before, we have shown our commitment to that most precious institution. We have put our money where our mouth is, with protection for the NHS budget during cuts, financial help this winter and support for the NHS’s plan for the future. More important than the money are the values behind it: our passion for the highest standards of compassionate care for every person who needs the NHS. Good care, not clever politics, is the future for our NHS.

--- Later in debate ---

[Frank Dobson (Holborn and St Pancras) (Lab)]

Whatever people like or dislike about the language, I do not think anyone could deny that the NHS at the moment is struggling to care for patients in the way that the hard-working staff in the NHS would like to be able to care for them and to deal with them as promptly as they would like. Everyone recognises that the NHS is managing to cope only because of its amazingly dedicated staff doing amounts of work and quality of work far above the call of duty. I have to say that a nurse from one of the two great hospitals in my constituency, to which the Secretary of State referred, said to me, “If he says how wonderful we are and then defends us not getting a pay increase, I will throw up.” I do not think she intended doing it in front of patients, but the hypocrisy of the approach she describes seems to me to be indefensible.

This situation is not entirely novel. A and E has been facing difficulties and has been overstretched in many parts of the country, even during the summer. That is largely because too many people are having to go to A and E or are being taken to A and E because they cannot be looked after properly at home. That is one of the main reasons. If people are kept in, there are not enough beds. I noticed that the Secretary of State quoted the King’s Fund. Having been interested in health care in London for 40-odd years, all I can say is that the main contribution of the King’s Fund has always been to demand reductions in the number of hospital beds; then, where there are not enough of them, it comes up with a million reasons why there are not enough—none of them being that there are too few beds; it is always some other factor rather than the shortage of beds itself that it manages to blame.

The reason why people, particularly the elderly and the physically and mentally disabled, have to go into hospital is that they cannot be safely looked after at home. Once they are in hospital and occupying a bed, they cannot safely be discharged home. So, they are brought in because there is no adequate care at home, and they cannot go back out of a hospital bed because there is no adequate care at home. The Government simply cannot get away from the fact that there have been massive reductions in care at home, particularly for the elderly. Logic suggests that if there are more elderly people who are chronically ill, there should be an expansion of the service to meet the increased need. In fact, however, services have been contracting.

The excellent work done by my hon. Friend the Member for Leicester West (Liz Kendall) a fortnight ago—just a small aspect of it—demonstrated that there had been almost 200,000 fewer people getting meals on wheels. I do not know whether the Government ever deigned to consider the impact of that, but if old people who previously relied on meals on wheels were not getting them, they were probably no longer being properly fed, and if they were not being properly fed, they were more likely to need nursing care. If no additional care was available, they were more likely to go to A and E and, once they had gone into a hospital bed, they were less likely to be safely discharged simply because they were no longer getting meals on wheels.

The meals on wheels service does not have the function only of providing food. On every day that a person gets meals on wheels, somebody is checking how they are doing, and it gives those who are lonely some human contact. The disappearance of all those meals on wheels will undoubtedly have led to more elderly people having to go to A and E, and fewer elderly people being able to be treated safely at home.

[Diana Johnson]

I am listening carefully to what my right hon. Friend is saying. He has the perspective of a London MP. In Hull over the Christmas period, we had the longest wait for A and E in the country—and this at the same time as we have seen a quarter of the local authority budget being cut, which impacts on social care. It seems to me that the two are very closely related. Does my right hon. Friend agree?

[Frank Dobson]

I entirely agree with that. The fact is that the services that can be provided at home need a higher priority than they have had in the past—under any Government. They need more staff with more time, because many of the people attempting to provide a service are given a quarter of an hour to dash in, help somebody wash or cook and then dash out again to rush along to somewhere else. If one person takes up more than a quarter of an hour, they will be late for the next person they are supposed to be looking after. What is more, all these people get lousy pay. In fact, the level of pay that such people get is a disgrace.

We also need a massive improvement in the co-ordination of services between hospitals, GPs, health visitors, nurses and the people providing those practical cleaning services and so forth. This will cost more. Anyone who pretends that we will not have to pay some more to get a service that works to replace one that does not is either just misleading themselves or—in the worst version—misleading other people.

Previous Governments have not expanded the services in line with the need, but the recent response of this Government has been to contract the service available, which is indefensible. Proposals under the new regime—if that is the right term, Madam Deputy Speaker—have brought about fragmentation, competition and binding legal contracts between various providers of these services. If anybody thinks that will improve co-ordination, they are again either deceiving themselves or attempting to deceive the rest of us.

In this country and in this House, we have to wake up to the fact that if we want a first-class service, we are going to have to pay a first-class fare. That was something I wrote in a long and entirely personal memorandum to the Prime Minister, not long before I foolishly resigned as Health Secretary. I pointed out that a massive increase in investment was needed. I am quite proud of some of the things I did when I was Health Secretary. That might have been the most important thing I did, because about two years later, the Government put an extra £40 billion into the health service. To be fair to the Prime Minister, I received a note from him saying, “Your long personal note triggered what we did.” I felt pretty glad about that.

When we talk about these issues, we need to bear in mind that our NHS is easily the most cost-effective system in the developed world. The total we spend on health care is 9.4% of gross domestic product: the Germans spend 11.3%, the French 11.6% and the United States, which has an insurance system like the one the leader of UKIP wants to introduce here, spends 16.9% of their GDP on health, and life expectation there is lower than ours.

The other really startling point, when we get people such as the King’s Fund and others demanding reductions in the number of hospital beds, is that for every 1,000 people we have three hospital beds, while the French have more than six and the Germans eight and a half. So far as I know, there is no daft consensus in either of those countries to get down to the British level.

Contaminated Blood

Diana Johnson Excerpts

Thursday 15th January 2015 Commons Chamber

[Diana Johnson (Kingston upon Hull North) (Lab)]

May I start by thanking the right hon. Member for North East Bedfordshire (Alistair Burt) for securing this debate and for all his incredibly hard work over the past year or so in championing this cause? I also thank him for his kind remarks about the late Paul Goggins, the late Jim Dobbin and the late Lord Morris.

I co-chair, along with the hon. Member for Colne Valley (Jason McCartney), the all-party group on haemophilia and contaminated blood, and it has been a privilege to be involved in putting together the report. I think I speak for both of us when I say that many of the contributions made by the nearly 1,000 people who gave evidence to the APPG were harrowing and at times very moving. The substantive report would simply not have been possible without those submissions. They are quoted throughout the report and highlight in vivid detail how the current system of support is not fit for purpose. Our report is clear that there needs to be dramatic change to the level of support people get, and the way in which it is managed, before we can even hope to achieve closure for these people. Needless to say, my biggest thanks go out to the whole community of people who have been affected by this tragedy.

In addition, I thank YouGov and the hon. Member for Stratford-on-Avon (Nadhim Zahawi), who generously helped put together the survey; the Haemophilia Society, which provides the all-party group’s secretariat, and particularly its chief executive, Liz Carroll, without whose help we could not have conducted the inquiry or produced and printed the report; and Fiona McAndrew and Thomas Stephens, who both worked so hard to put the report together. I am also pleased that my right hon. Friend the Member for Leigh (Andy Burnham) is on the Labour Front Bench, and that the Secretary of State for Health and his Minister, who has direct responsibility for this area, are also present.

I want to highlight two matters. First, I want to clarify the issue about the number of people infected with hepatitis C. Since we concluded our inquiry, several people have got in touch about the figures. We state at the beginning of the report that, historically, it was estimated that more than 30,000 people were infected with the virus during the relevant period, and the figure was given in the Government’s 2011 review of support for those affected. Figures for the numbers affected by haemophilia derive from the United Kingdom Haemophilia Centre Doctors Organisation, and those for the number of people without bleeding disorders who are infected are estimates from an academic study.

I want to make it clear that no support package would extend to anywhere near such a number, because many of those originally infected have—unfortunately and sadly—died, while some cleared hepatitis C at the acute stage and others, especially those infected through a blood transfusion, would find it very difficult to link their hepatitis C infection with a single period of NHS treatment and so could never qualify for help in practice. It would be a shame if any Government used such a figure to argue that it is too costly to expand support. In practice, trust-based assistance would cover only a much smaller number of people—fewer than 6,000—and any consideration of the costs of extending the support package should take that into account.

Secondly, I want to highlight the case of my constituent Glenn Wilkinson, who was infected with hepatitis C from NHS-supplied blood products. Without Glenn, I would never have become involved in the all-party group. He is a resolute and determined activist, and he has campaigned vigorously for more support for those affected. We all owe him a huge debt of gratitude for keeping on going, and for fighting for what is right.

As a minimum, Glenn would like a number of measures taken to reach a full and final settlement for all. I will set out what he has told me in the past few days and how it fits with what we said in the report. First, he wants to remove the distinction between stage 1 and stage 2 hepatitis C, because the majority of people in stage 1 do not receive ongoing payments. The distinction is based on a decision that those in stage 1 are not in a state of ongoing need, but our inquiry clearly showed that they are in need. The accounts we received show that the Government need to rethink the current system, which denies ongoing support to those in stage 1. We therefore recommend that the Government provide ongoing payments to all people with stage 1 hepatitis C at a level to be set by a public health doctor.

Secondly, Glenn wants all widows and family members of deceased infectees to have equal access to financial support, irrespective of the infection that caused the virus. We recommend that all widows of hepatitis C infectees, who are currently denied any ongoing support, get the same support as those of HIV infectees. We also recommend that the families of deceased hepatitis C infectees should get the same support for at least nine months after the primary beneficiary dies, as is already the case for those with HIV. Thirdly, Glenn wants the support to be simplified and administered by just one trust, rather than by the five trusts that currently exist. Our report recommends that the Government review the support provided, because it is a mishmash and a hotch-potch.

[Kerry McCarthy (Bristol East) (Lab)]

I congratulate my hon. Friend and other Members involved in producing this excellent report. One of my constituents affected, Councillor Bill Payne, has praised the report. On her point about the piecemeal nature of the support available, I must say that I was really struck by that when I read the report. It is difficult enough to deal with the health care system and the welfare system without the additional burden of bureaucracy, and it seems that some of the organisations involved are not very good at responding to people’s needs, so I agree that that needs to be addressed urgently.

[Diana Johnson]

I am grateful for that intervention. I think I should be allocated an additional minute that has not been put on the clock. [Interruption.] Thank you, Madam Deputy Speaker.

Fourthly, Glenn told me that he thinks it would be fair to see priority access to NHS treatments for those affected, and that is rightly one of our recommendations. He also wants automatic passporting to employment and support allowance and disability benefits for all infectees. Because this is an all-party group, that recommendation is not included in the report, but I think it should be considered by the Government. Just today I received a message from someone who said that the money they get from one of the trusts is now being spent on paying the bedroom tax—I am sure the Minister does not think that that is what trust money should be used for. Once the Penrose inquiry is published, we hope there will be no further delays, or that any delays will be minimised in any inquiries that the Department of Health and Government need to make.

I will end with a quote from a person I think was very brave to come forward. She is an HIV infectee and the widow of an HIV-infected husband:

“I refuse to be a victim. Despite everything I cherish my life and count my blessings. I have faith that this will end soon and maybe then, my talents, intelligence, spirit, sense of justice, experience and energies can be better directed at contributing towards and being part of a better society. I pray for the day when this Trust is out of my life. I do not think that is much to ask.”

--- Later in debate ---

[Mr Andy Slaughter (Hammersmith) (Lab)]

In preparing for this debate, I looked at the debate that my hon. Friend the Member for Coventry North West (Mr Robinson) sponsored at the beginning of this Parliament—in October 2010. I noticed that I, like a number of Members, said that action was needed more than contemplation. Since then, we have had many further debates. Indeed, we had a debate last week on hepatitis C in Westminster Hall, to which the Minister responded. We have had other such debates, the ongoing Penrose inquiry in Scotland, attempts to reform the existing arrangements and the very good report yesterday from the all-party group.

Tributes have been paid to the right hon. Member for North East Bedfordshire (Alistair Burt) for his sterling efforts to work towards a final solution. I note also that there is further legal action. Today, a letter for action has gone to the Department of Health from three sufferers of hepatitis C through contaminated blood about the inequity of their treatment compared with those suffering from HIV. The issue is not that nothing has been going on, but how much further on we are after four and a half years. I think the answer is not that much. It is easy to say that that is no one’s fault or everybody’s fault, but we must take some responsibility here. It is the role of this House to hold the Government to account when they are not living up to their moral obligation, which they are not at present.

Let me say one quick word about the existing arrangements. The report is good. It produces a lot of evidence for why the current schemes are not working, and we have heard individual criticisms of Macfarlane, Caxton and Skipton. Having read the report, my conclusion is that none of the trusts and funds is fit for purpose. If they are to continue while we await a final settlement, we must have root and branch reform and the funds must be resolved into one effective body. The politics is wrong. The funds purport to be independent bodies, but they appear to be too close to the Department of Health, meaning they have neither the benefits of independence nor the clout of accountability that should lie with the Department of Health. At the same time, they have become part of this degrading process where sufferers, who are largely reliant on benefits, are effectively begging for resources and often living in a state of penury.

That is only one part of the ongoing situation, which includes Penrose. The same situation has happened in the past, where we have been waiting on a report for consideration. Both the final conclusion on a financial settlement and the clear identification of culpability and responsibility are awaiting an outcome. I am grateful to my constituent, Andrew March, for giving me a very thorough briefing for this debate. Off the top of his head, he set down 14 reasons why unfairness has been caused to sufferers. They include the failure to act by successive Governments, which meant that products were not banned early enough and contaminated products were not withdrawn; that haemophiliacs were tested for both HIV and hepatitis C without their consent and not informed of the result; that haemophiliac children were subjected to hepatitis in infectivity trials; that minors were informed of their status without their parents being told; and that individuals were told of their status either by letter through the post or in public places. I could go on. Those are disgraceful actions. We need closure and an inquiry that will bring those matters to light.

I understand that we are to be told later today that the Penrose inquiry will report on 25 March. That is just before the purdah period and, as the right hon. Member for North East Bedfordshire said, leaves very little time for any conclusions based on those findings to be released before the election. That is deeply to be regretted, because whoever is in government after May will have many pressures on their time. I hope that this issue, if it is still not resolved by then, will not be lost. I would like to hear from both Front-Bench teams today that it will be a priority, whoever is in government, not to let the work that is done, if it is not resolved by then, fall foul of where we are.

[Diana Johnson]

My hon. Friend makes a good point about the difficulty produced by Penrose’s not reporting much earlier. The APPG was hoping that when we produced our report the Penrose report would be available, and that we could then have the conclusion to the negotiations in Downing street. The delay from Penrose has been very frustrating.

[Mr Slaughter]

It has been. It is, I think, tragic that we may go into another Parliament without a solution to these issues. If I had to say one thing, it would be this. Yes, we do need a public inquiry. We do need to identify responsibility and culpability. We do need to have the fullest apology based on the clearest evidence of what has gone wrong. We do need to make sure that interim and existing arrangements work properly, and we do need transparency. But, above all, I think we need compensation, and that cannot be delayed, perhaps for years, while all those processes are worked through.

I will, if I may, read a short statement from Andrew March, who will be familiar to many campaigners on this issue. He was the applicant in the judicial review case. He has studiously and devotedly pursued these matters for many years. He says:

“I am one of only 300 HIV positive haemophiliacs who remain alive and was infected at only nine years of age. Of those originally infected in the 1980s, more than three-quarters have died during the course of the past 3 decades. Many of them were my friends. I was also infected with Hepatitis B and C, and despite treatment, I continue to live with the adverse effects of cirrhosis of the liver. I am also one of the 3,872 haemophiliacs…who have been notified as being considered ‘At-Risk’ of variant CJD…Despite the authorities always maintaining that the risk was merely ‘theoretical’, I was shocked to learn in February 2009, that an elderly haemophiliac had been found with vCJD…in his body during post mortem…This news was not entirely unexpected, but I still became very worried that vCJD had the capability to become yet another ravaging illness.

More recently, I was informed by my doctors that I had been exposed to yet another pathogen, this time, Hepatitis E…As I sigh in disbelief that there seems to be no end to the multiple infections, I try to keep looking forward with some degree of hope that this will, one day, be sorted out once and for all.”

Those are the words of an extremely brave and resolute man. He and all the other sufferers deserve respect—which they are not getting from the current financing arrangements—they deserve justice and they deserve a full and proper compensation package. That should include compensation for family members. It should deal with all conditions, and it should remove the stigma of means-testing, ATOS assessments and so on. That is the least that we, as a country, can do for people who have suffered as a consequence of the state’s action.

--- Later in debate ---

[Huw Irranca-Davies]

I agree very much with my hon. Friend. We need a UK solution because this is a UK problem, so work must be done in concert with the devolved Administrations and Governments.

My constituent says that in 1982:

“We were called into consultant’s office, at the…Hospital…My future wife was pregnant and we were strongly advised to have a termination. However, he was not specific about reasons why, other than the possibility of our child either having or carrying haemophilia, so we refused.

1983—Our son was born and they wanted to take a blood test from him. It was after this they told us of my…HIV infection, at this early stage they had no idea what it entailed. We were advised not to mention to other patients at the hospital and to refrain from sexual intercourse until they knew more. Thankfully our son did not have the virus. Feeling uncertain about the future, it was awful to be told we had to keep this to ourselves. At this time it was very much publicised in the media and friends of ours, who knew of my Haemophilia began questioning us on whether or not I had been affected. Suffice to say I felt I was on borrowed time and on my own admittance, went off the rails and neglected my son and new wife.

1985—My wife fell pregnant again and convinced I was going to die sometime soon, the fear and uncertainty about the future made us feel we had no option but to have a termination.”

He goes on to say that a support group was set up and:

“We began attending meetings with the group and felt better for the support but sadly the participants began dying at an alarming rate and it just made the situation worse.

1991—My brother, who also had Haemophilia and HIV passed away. Prior to this we had undergone clinical trials at the hospital and because we were brothers, he was given the placebo. The guilt I felt because I was taking the actual product and had survived was indescribable. The following year my second brother was tragically killed.

1993—In short I had given up, I knew I was going to die and felt I could fight no longer. I ended up in hospital with PCP pneumonia and my wife was told I had a matter of weeks. Even though I had given up on myself thankfully my family and the hospital staff hadn’t…and I eventually pulled through.”

He goes on to describe their three-and-a-half-year fight from 1995 to become the first couple with HIV status in the UK to adopt despite being told no, no and no again. He continues:

“2001—We were asked to consider adopting two more children”,

in addition to the one they had adopted during that period,

“a boy and a girl aged five and seven. We agreed and my wife finally had the family she had been craving. It was just after this, I was told I had also contracted Hepatitis C and possibly vCJD. Obviously we were devastated and all the old uncertainties we had pushed to the back of our minds pushed forward with force. However, all was not lost I was assured a treatment was available.

2002—Late in the year, I began treatment for Hepatitis C. We had been warned prior to this, I wasn’t going to be easy to live with but looking back now I feel this was an understatement. The two children we had living with us, had severe psychological problems and their behaviour just served to exacerbate the situation and subsequently the placement broke down.

2003—The two children went back into care and I found myself unable to cope with my grieving wife and my two existing children. I wasn’t in a very good place at this time and my wife and I came very close to separation. It was only because we had been together since we were sixteen and married at seventeen, we worked to stay together. The treatment reacted with my HIV drugs and I ended up in High Dependency with Pancreatitis. Following this, my wife had to sell her business as I was ill and unable to cope at home without significant help.”

[Diana Johnson]

My hon. Friend is making an incredibly powerful case, but what strikes me is that not only the individual is suffering but the family members are, too—the wife, the children and everyone else. It is striking.

[Huw Irranca-Davies]

Absolutely. It rips through not only the individual but their families, friends and every other aspect of their life.

I will continue to the end of my constituent’s story, as it goes on to this day. In 2004, the selling of the business meant that they had limited income and were unable to meet their bills. The debts piled up during their financial struggles and this put additional strain on the marriage. He goes on:

“2005—Our debt situation was spiralling out of control and as I felt a little better in myself my wife, who had studied for a degree while she was out of work could now get a…job as a care manager and she went back to work full time.

2006—We were asked about taking another child for adoption. Understandably following the breakdown of the last placement we were wary but agreed as everything seemed far better than it had been. It was in 2007 we had our second adopted daughter.”

From 2006 to 2010 they saved what they could to clear the debts they had accumulated since 2003. For the next few years, because of his deteriorating health, his wife had to return to part-time work rather than full time and the debts accumulated again. To bring this up to date:

“We have cleared our debts and with my wife working part time we are managing day to day to keep our heads above water. We have the basics we cannot save money or enjoy holidays. We keep away from past friends as I am well aware of how ill I look and do not want to answer their questions. I take a great deal of medication and am trying to live with the side effects, as is my wife!

The Macfarlane Trust had recently sent us a ‘disbursement of reserves’ form, requiring personal and in depth information to enable us to possibly have some money for home improvements. My wife and I felt it was an extremely unjust and unfair way of attempting to distribute funds amongst sufferers of HIV and their families. Not everyone would, or could qualify as they were in rental accommodation, or perhaps their home was not in need of improvements. It was causing a divide amongst the few that have survived this atrocity and we refused to complete it as any reserves we felt need to be distributed equally amongst those of us that are left. It seems the discrimination, separation and sheer lack of consideration for the primary beneficiaries is still very much in evidence.”

My constituents, like those mentioned in so many stories today, are asking not to have to go out with a begging bowl in complex situations, having to prove that they are worthy. This is an entitlement, not something to be begged for. They want some form of inquiry and a clear apology and there is a crying need for root and branch reform of the structures that have been put in place to help them. This is not working satisfactorily.

My constituents’ story will be reflected in the story of every person and every family affected. The disease does not simply affect them; it forces many into penury, marital difficulty and so many other social problems. It is time to sort this out once and for all.

A and E (Major Incidents)

Diana Johnson Excerpts

Wednesday 7th January 2015 Commons Chamber

[Mr Hunt]

The services that the Ipswich team have been delivering are absolutely brilliant, and I congratulate them. I thank my hon. Friend for his support for their work, which I know is so important for the people of Ipswich.

[Diana Johnson (Kingston upon Hull North) (Lab)]

The Secretary of State said that 14 major incidents have been declared. I am told by a senior front-line worker that many hospitals are declaring internal major incidents—they have done so for some time—because that is more politically expedient and does not get into the press. How many internal major incidents have been declared in the past month?

[Mr Hunt]

To my knowledge, over the past few weeks there have been 15 major incidents, including internal ones. Three have now been stood down, making a total of 12 at the moment.

Autism: Diagnosis of Children, Hull

Diana Johnson Excerpts

Monday 5th January 2015 Commons Chamber

[Diana Johnson (Kingston upon Hull North) (Lab)]

First, I would like to thank you, Mr Speaker, for selecting for the Adjournment debate this evening the important subject of the unacceptable length of time families in Hull are having to wait for a diagnosis of autism for their children. It is an issue I have grown increasingly concerned about over the course of the past year.

I was first contacted in spring 2014 by constituents about how long they were having to wait for a diagnosis. The National Institute of Health and Clinical Excellence produced a report in 2011, “Autism: Recognition, referral and diagnosis of children and young people on the autism spectrum”, which states that

“the autism diagnostic assessment”

should start

“within 3 months of the referral”.

The three-month target has since been reinforced by a NICE quality standard on autism, but the service level agreement set by Hull NHS clinical commissioning group is for children to be assessed within 20 weeks of referral, and what is actually happening is very different: families are waiting for well over 12 months, and even for 18 months, to get the diagnosis.

I am particularly concerned about the role of Hull clinical commissioning group, whose job it is to make sure that health services are available and delivered to the local population in a timely manner. I believe the CCG is failing to do that in relation to diagnosing children with autism. It appears not to have a plan on how to tackle the backlog and is also failing to communicate with parents about how long they will really have to wait for a diagnosis. I hope that tonight the Minister will be able to reassure me and my constituents that he will take action on the growing problem in Hull—and, I believe, in other parts of the country.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter to the House for consideration. She has eloquently outlined the position in Hull. Across Northern Ireland, we have had a 67% increase in the number of individuals with autism and we have 1,300 children waiting to be assessed. The problems in Hull are replicated across the whole United Kingdom. One way in which the issue can be highlighted is, of course, through education in schools and hospitals, but the recognition of Dr Cassidy, chief executive of Autism Northern Ireland, in the new year honours list was another step in raising the profile of those with autism across the whole United Kingdom, but especially in Northern Ireland.

[Diana Johnson]

I am grateful to the hon. Gentleman for that intervention, which sets the context very well.

Let me tell the House about the experience of three families in my constituency and what the delays actually mean to families and children in Hull. Jayden was three years old when his family first contacted me. His mum, dad and grandmother were desperate to make sure that Jayden received the help he needed. His parents had tried to arrange an assessment with the autism panel in Hull. Without that diagnosis from the panel, Jayden’s parents could not access the specific local services that he needs. They were told that even if they obtained a private diagnosis from a doctor, it would not be acceptable.

Jayden’s parents have found the whole situation very difficult, and I know that Jayden’s grandmother, Mrs Spivey, has really tried hard to fight for her grandson to get the help he needs. Despite initially being told that it would take 20 weeks for a diagnosis to be made, Jayden’s parents were eventually told that in fact it would take 57 weeks. Jayden is now four years old; he still has no diagnosis and he has no speech. His family wanted him to attend the Early Bird programme, an early intervention scheme, but this is available only to children who have received a diagnosis, and Jayden is still waiting.

Thomas is 11 years old. His parents contacted me in June 2014. They believe that Thomas is on the autistic spectrum and have been trying for several months to obtain support. Thomas is high functioning and the long delay is adding to his anxiety. Thomas was referred to the autism panel in October 2013 and his parents were advised by child and adolescent mental health services that, owing to the severity of his needs, he would be seen within 12 weeks. His parents have now been told that he is on the February 2015 list to start his assessment—15 months since the referral. This is what his parents say:

“Thomas is suffering, he is an intelligent, beautiful little boy whose world is collapsing. He is confused by the behaviours he displays and cannot understand the responses which other people present. He is lonely and desperately in need of support. Likewise we are a family in crisis. We feel that Thomas deserves to know why there is insufficient funding to provide the diagnosis he so desperately needs. A diagnosis would bring him support and access to services which he needs to function.”

Thomas’s parents have had little contact from the CCG. They too were initially told that the waiting time was 20 weeks.

Isaac is three years old, and he suffers from severe social and communication difficulties. His parents requested an assessment for autism/sensory processing disorder He was referred to the autism panel in January 2014. His parents were initially told that he would be assessed within 20 weeks, but they have now been told that it will be Easter 2015 before he is assessed. Isaac’s parents were particularly concerned about applying for schools for him in September without having a formal diagnosis in place.

These families in Hull are clear examples of unacceptable and lengthy delays in a diagnosis of autism causing real stress, hardship and worry to families, as well as to the children themselves who are missing out on services and help.

[Alan Johnson (Kingston upon Hull West and Hessle) (Lab)]

My hon. Friend is making a very powerful case. Does she remember that we were told that the review of child and adolescent mental health services in Hull in 2013 that led to the closure of the tier 4 unit—the in-patient facility at West End—was designed so that more resources could be put into early assessment and early diagnosis? Does she believe that we now have the worst of all worlds, with no in-patient CAMHS unit and still a very poor assessment and diagnosis time scale?

--- Later in debate ---

[Diana Johnson]

I am grateful to my right hon. Friend, who powerfully makes his point about how we are now in the worst of all worlds, with the early intervention not being there and the in-patient unit having been lost as well.

The Government have talked at length about the strength of early intervention and how important it is, and we would all agree. We know that the sooner children get help, the better the outcomes for them.

After raising my concerns with the clinical commissioning group on behalf of constituents in April last year, I was told that the waiting time for an assessment in Hull was approximately 14 months, not the 20 weeks that the CCG was telling people. The CCG told me that a number of issues had affected the delivery of the service. First, it said that there was an unexpected and significant increase in the number of referrals to the service, which in some months had tripled based on 2013 activity. It said that there had been several unanticipated changes in the staffing and resources for the lead organisation. It referred to the flooding of a children’s centre and classroom at Walker street, in the constituency of my right hon. Friend the Member for Kingston upon Hull West and Hessle (Alan Johnson), that is used by the autism service. It also said that the availability of specialist knowledge, skills and experience required to make a diagnosis of autism to meet the increased number of referrals had been lacking. The latest information that I have received indicates that the long wait has not improved in the past nine months—in fact, it looks as though it is getting worse—and yet families are still being told about the 20-week standard when they are first referred.

In a letter dated 20 May 2014 from Emma Latimer, the chief officer at Hull CCG, I was told:

“The CCG is working closely with the Humber NHS FT provider services to further understand the issues relating to the increasing waiting times for children and young people that are beyond the commissioned 20 week pathway.”

In a further letter from Emma Latimer dated 8 August 2014, I was told:

“As a result of recent pressures the whole assessment pathway was reviewed by commissioners and the service providers in early June 2014. We are working with the service to increase capacity in this specialist area and increase the number of assessments which can be undertaken. As well as exploring ways of working in order to expedite the process whilst maintaining the quality of the service. The changes proposed include a system to assist administration and aid report writing. These will release time for clinicians to conduct some more assessments.

As Commissioners we are prepared to fund additional clinicians to conduct the assessments; this may include utilising other health care providers who already work closely with the Autism Team, including our local authority colleagues/services.

We will continue to look for every opportunity to increase the resource in the Autism Team, and will continue to work closely with our providers in order to achieve a high standard of assessment in a more timely manner.”

However, I had sight of a letter dated 28 October 2014 to a parent from the Humber NHS Foundation Trust, from which the situation appears very different. Philip King, the interim director of nursing, states:

“The current position is that Humber NHS Foundation Trust prepared a business case for additional staffing which was sent to the Clinical Commissioning Group (CCG) for consideration over the summer. At the steering group meeting in September 2014 our staff gave the CCG an additional paper outlining the staffing needed to address the waiting list in addition to the staffing needed to meet the demand for the assessment service. A range of solutions for the capacity issue have been discussed openly with the commissioners who continue to communicate that they do not wish the service to change the level of assessment which is offered and is NICE compliant (although not to its timescales for waiting times).”

The letter goes on to say:

“As of today”—

this is 28 October—

“the Trust has not heard from the CCG regarding additional staffing capacity.”

I have been chasing the CCG ever since to see what has happened, and I have been fobbed off. I have been promised information and updates, but I never get anything, including today, when I approached the CCG again. The CCGs set up under this Government need to be challenged about providing information and being held accountable for the services they provide. Over the past nine months it has been very difficult to find out what is going on. That is why I have brought this matter to the Floor of the House for a Minister to hear what is happening in CCGs.

I am very concerned that Hull CCG is failing to tackle the problem and since the summer has been dragging its feet on making a decision on a business case that has been prepared to increase capacity. I am aware that the NICE three-month target for diagnosis is consistently not being met across the country. A survey conducted in 2011 by the National Autistic Society found that 48% of parents had to wait over a year for their child to get appropriate support, with more than a quarter saying that they had to wait over two years. In the same survey, 69% of parents said that their child’s educational progress had suffered because of a lack of timely support, and three quarters said that a lack of support had harmed their child’s social and communication skills.

It is clear from the local cases I have referred to this evening that delays in obtaining an assessment can have a negative impact on a child’s education and development. So what can be done? First, Hull CCG needs a clear plan of action on how to tackle the backlog in diagnosing autism, and it needs to respond to the business case prepared in the summer by Humber NHS Foundation Trust.

The National Autistic Society informed me that health services in Sheffield have achieved a significant reduction in waiting times by developing a dedicated diagnostic team, and ensuring that staff are not trying to do other jobs alongside playing a role in the diagnostic process. I want Hull to look at best practice elsewhere and have a clear plan of how to deal with the problem.

I am concerned about the ability of services in Hull to recruit and retain suitably qualified clinicians. This has been mentioned to me by a number of different organisations, and I believe that there is a real problem in Hull. There is a competing demand for the same staff from the local authority, as they are required to complete what used to be called statements of special educational needs. I would like to know from the Minister what steps the Department of Health can take to ensure that sufficient numbers of clinicians are being trained in Hull and across the UK.

Hull CCG needs to communicate better with parents so that expectations are realistic and based on honest information. I am disappointed to hear that the autism service is still sending out letters to parents which say that the waiting time for an assessment is 20 weeks.

The Government recently set up a taskforce on children’s mental health and well-being. Part of the role of the group will be to look at the most effective way of commissioning appropriate services for children and young people with mental health problems. Can the Minister say whether the taskforce on children’s mental health and well-being will look at the specific commissioning of autism services locally? Can he confirm that the taskforce on children’s mental health and well-being will look at the specific challenges facing children with suspected autism in accessing a diagnostic assessment?

In order to allow parents and stakeholders to hold local services to account, it is important that data on waiting times for the diagnosis of autism are routinely collected and published. The National Autistic Society has called for those data to be included in future revisions of health outcomes frameworks. What plans are there for including data on diagnosis of autism and waiting times in particular in the NHS outcomes framework and the CCG outcomes indicator set?

Finally, I have also been asked specifically to raise the issue of girls being diagnosed on the autism spectrum and then being able to access appropriate autism services after being diagnosed. What additional support is being given to girls? I hope the Minister can give my constituents some hope this evening that addressing the problems in diagnosing autism in children can be speeded up considerably in Hull and in other parts of the country and that children can start to access the services they need fully to develop and reach their full potential.

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

I congratulate the hon. Member for Kingston upon Hull North (Diana Johnson) on securing this debate on what is an important issue for her constituents and for many families, both in Hull and across the country. She made a strong advocacy for the needs of Thomas and many of her other constituents, and discussed some of the challenges locally as well as the flooding of facilities in Walker street, which has affected services. I think she would agree that the situation that has developed locally over time is unacceptable. I hope I will be able to reassure her that improvements in access to services are taking place and that improvements have been made over the past 18 months or so.

The National Autistic Society estimates that there are about 700,000 people in the UK with autism. We know that the right support from an early age, as the right hon. Member for Kingston upon Hull West and Hessle (Alan Johnson) said, can make a huge difference to the quality of life for children and adults with autism and for their families.

Before I address some of the specifics of the local issues in Hull, I think it is worth talking about some of changes this Government have made to improve lifelong support for people with special educational needs such as autism. I hope that will address the questions the hon. Member for Kingston upon Hull North asked in her closing remarks about improving services for people in Hull with autism.

The Children and Families Act 2014 introduced, from September, new joint arrangements for assessing, planning and commissioning services for children and young people with special educational needs and disabilities. In the past, many children and their families have encountered a disconnected and fragmented system. Families, particularly those with a child with complex needs, have often faced a battle to secure all the necessary support services, finding themselves repeating the same story over and over again to different providers who are not integrated or working together properly.

The new framework will change that. It is designed greatly to improve integrated working across health, education and social care, and to deliver improved outcomes for children and their families. CCGs and local authorities will work together to agree a local package of support services for children with special educational needs and to develop personalised education, health and care plans for each child who needs one, focusing on the outcomes that will make a real difference to the individual child and their family and friends.

Each child, and each young person up to the age of 25, who needs an individual education, health and care plan will have one tailored to their individual needs, including their options for future employment and independent living. Involving the child and the family at every stage of the process is, of course, essential. The plan must be developed in collaboration with the child and the family, and should cover the range of services that the child will receive and the specific outcomes each service will deliver. The plans will also have a section for the child and the family to talk about themselves, their wishes and their aspirations, to set the context for the assessment of need. I am confident that this new approach will be a powerful tool to better join up and integrate services across the local NHS, education services and local authorities for the benefit of both children and adults with autism.

On the specific issue of waiting times for diagnosis in Hull, we know that children with autism can benefit from receiving specialist services as early as possible. The hon. Lady made that important point. The new education, health and care plans will help to ensure that children receive all the support they need, but a diagnosis is of course crucial in identifying from which services a child might benefit.

Hull CCG has committed to commissioning services with the aim of providing autism assessments and diagnoses within 20 weeks of referral, as the hon. Lady said. The CCG acknowledges that it is currently far from meeting that target. I agree with her that the situation at the moment is unacceptable. The current longest wait is almost 64 weeks, which is not appropriate or good for families. It is not right that anyone should have to wait that long, and it adds stress to what is often already a difficult time for families and children.

It is vital to recognise that NICE has guidelines on the importance of early and timely access to autism services for a diagnosis, but we must also accept that when the CCG took over commissioning from the primary care trust in April 2013, it inherited an even worse position than the one we have now. The hon. Lady was disparaging about CCGs, but I hope that will give her some reassurance that the clinical leadership of the CCG—together with the changes put in place as a result of the local education, health and care plans—are improving the quality of services.

Although only 52 children were waiting when the PCT transferred its responsibility to the CCG in April 2013, the longest wait at that point was 129 weeks, which is two and a half years. Hull CCG is working hard to address the issue of long waiting times for the assessments, and it has made substantial progress. The longest wait is now less than half the figure of 129 weeks. That reduction has been achieved while demand for autism services has been rising rapidly. The number of children requiring an assessment has increased sixfold, from 52 in April 2013 to 299 in December 2014. However, the long wait for services has halved, so some progress has been made.

Like many areas across the country, Hull has seen a large increase in the number of children referred for autism assessments and diagnoses. If the growth in the number of referrals means that more children with autism are receiving a diagnosis and therefore access to the services that they need to succeed in life, then the trend is obviously positive. However, it does of course put pressure on the multidisciplinary teams working to provide the assessments needed for autism diagnoses.

The hon. Lady drew attention to the fact that, in accordance with NICE clinical guidelines, Hull CCG commissioned an autism team made up of staff from a range of specialties and working for various providers. In response to the increase in demand for assessments, the CCG has been working with local providers to recruit additional staff to the autism team. However, it has found that recruiting to some specialties in the Hull area, particularly speech and language therapy, has been a challenge.

The CCG is continuing to work with local health and care providers. I had a conversation with the CCG area team earlier today, and I was reassured that it is now looking with greater vigour to recruit more permanent staff where there are challenges. In the meantime, there is an agreement with current staff for them to put in additional hours to support better access to services. That is only part of a short-term solution, however; the long-term one has to be to recruit more staff, particularly in vital services such as speech and language therapy. I was encouraged to learn, during my conversation earlier today, that greater emphasis will be put on long-term recruitment in the Hull area.

The CCG has also improved working practices in the autism team, which has freed up time to allow more assessments to take place. However, it is important to remember that, as the hon. Lady mentioned, Hull CCG lost an important clinical space when the Walker street children’s centre, a critical area for the service, was flooded during a tidal surge in December 2013. The centre allowed complex, multi-therapist diagnoses to be made, and its loss has had serious repercussions for the local service, which is not good for the delivery of timely access to diagnostic and other care services for people with autism. However, the CCG plans to reopen the centre early this year, which will go some way to reducing the waiting times for assessment. I hope that that reassures the hon. Lady and her constituents.

In the meantime, while the local NHS continues to work towards its commissioned target of a 20-week waiting time for autism assessments and diagnoses, it is also working to assist parents who are facing the current long waits for such assessments. The CCG is ensuring that while families are on the waiting list, they are able to contact the autism team. That enables them to access appropriate information and support services pending a formal diagnosis, which I believe is available from both voluntary and private providers in the area. That does not, of course, make the long wait for assessment and diagnostic services acceptable, but it means that families are not left completely unsupported and alone at what can be a difficult time.

[Diana Johnson]

I am listening carefully to the Minister and I am grateful that the CCG has been willing to brief him in a way that it was not willing to brief the local Member of Parliament. Does he find it acceptable that families are being told there is a 20-week wait for a diagnosis when clearly that is not the case? The wait is much longer, yet parents and families are still being given that false information.

[Dr Poulter]

I agree that the current situation is not acceptable, but the CCG inherited a much worse position from the primary care trust, and it has made progress in addressing the needs of those who have been waiting the longest. As I described earlier, in April 2013 when the CCG came into existence, the longest wait was 129 weeks. In October 2014 that had fallen to 81 weeks, and by December 2014 to 63 weeks. Progress is being made to deal with those unacceptably long waits, but ensuring that all families receive timely access to services must be the next priority. I am sure that the reopening of the Walker street service will be helpful in that respect, and that the hon. Lady will hold the CCG to account and bring the matter back to the House if it does not deliver improved services in the near future. Progress has been made in dealing with those long waits, but there is a much greater need to ensure that all patients receive timely access to a service. While a 20-week waiting time is a strong move in the right direction, in future patients should expect the service to move towards NICE guidelines.

Let me talk briefly about the broader issues that were raised in some of the interventions, such as training for staff. It is important that all NHS staff have a greater awareness of autism. The mandate for Health Education England was set by the Government and includes a requirement to develop a bespoke training course to allow GPs, who are often the first point of contact for many families, to develop a specialist interest in the care of young people with long-term conditions—including autism—by September 2015. Hon. Members may also have seen this week’s announcement by the Royal College of General Practitioners, which has launched a training programme for its members to improve the diagnosis of autism and support. I welcome that because when primary care is the initial point of contact for so many families, it is important that general practitioners have greater awareness and training in the challenges facing families with autism, and in how to recognise a child that may have autism.

The Government have provided grant funding to the Royal College of Paediatrics and Child Health to lead a consortium of voluntary sector partners and medical bodies to develop an extensive programme of resources—Disability Matters—to be launched in early 2015. It is designed not only for health professionals but for the wider work force that engages with children, and will help to raise understanding in the NHS about how to support families and young people with disabilities, including autism. Importantly, the more we do to educate not just the health work force but those who work with children with autism more generally, the more we will encourage early access to the support that those children and families need.

I commend the hon. Lady for her important and well-made case on behalf of her constituents with autism, and for raising an important matter about what has been unacceptably poor access to autism services in Hull for a number of years. I hope she is reassured that the CCG is beginning to make some progress, and I know that she and the right hon. Member for Kingston upon Hull West and Hessle, who is sitting next to her, will do all they can to hold the CCG to account. I know they will not hesitate to bring this matter back to the House if improvements are not made in the months ahead.

Question put and agreed to.