Adult Social Care

George Mudie Excerpts

Wednesday 21st January 2015 Westminster Hall

[Mr George Mudie (Leeds East) (Lab)]

It is a pleasure to see the Minister here for this debate as well as you, Mr Robertson. I thank the Speaker for this opportunity to discuss the present and future state of the adult social care sector. This area of local government covers a vital service for the most vulnerable people in the country, with the elderly, the disabled and those with mental health difficulties being among its most prominent users. In the past four years, its future has become more of a concern.

We are weeks away from a general election and the Government are anxious that their fiscal plans are seen to be successful. Central to those plans is the fact that cuts to public services are unavoidable and necessary and that they must continue for the next four years. Before we blindly accept that doctrine, the debate gives me an opportunity to spell out briefly the extent of the damage those cuts are having on the lives of hundreds of thousands of vulnerable people who use the adult care service.

The Government have ring-fenced the health and education budgets, so, with those two huge Departments free from cuts, money has to be found from other Departments. In local government, adult social care services is the next largest budget. The Government have claimed to understand the sensitivity of that work, but nevertheless the 40% cuts in local government spending have made it impossible for the service to escape unscathed.

Age UK, the leading charity in this sphere, states that the sector has lost more than £1 billion since 2010—and that is at a time when, because of demographic changes, with people living longer, the services requires more money, not less. It is good that people are living longer, but when they eventually ask for help, because they are older, their needs are more complex and expensive.

[Mr David Ward (Bradford East) (LD)]

Does the hon. Gentleman accept that cutting that spending is a false economy? If quality care is not provided at the right time—in particular in the home environment—more expensive care will often need to be provided later in hospitals and other care support centres.

[Mr Mudie]

The hon. Gentleman is quite right. I will touch on the sheer lack of connected thinking in the Treasury—I do not think that the Department of Health has much to do with that.

The National Audit Office, which is usually pragmatic and non-political and accepted as objective, pointed out in its review of the service that total spending on adult social care—covering the whole gamut of, I suppose, 18 to death—fell 8% in real terms between 2010-11 and 2012-13. Older adults experienced the greatest spending reduction at 12% in real terms. Interestingly, the NAO stated:

“Rising needs, reducing local authority spending, and reductions in benefits may be putting unsustainable pressure on informal carers and acute health services.”

Chillingly, it went on to say:

“National and local government do not know whether the care and health systems can continue to absorb these cumulative pressures, and how long they can carry on doing so.”

That is from its review last year, yet the cuts have continued.

[Mr Jim Cunningham (Coventry South) (Lab)]

To substantiate the point that my hon. Friend has just made, I can tell him that about a fortnight before Christmas we met local GPs who were voicing concerns about bed blocking in particular, caused by cuts in local government expenditure for social care. That is reminiscent of what happened under the previous Conservative Government.

The other affected area is meals on wheels. When a visitor goes to an old person’s house, they see what condition they are in and often they are able to help but get only 15 minutes to do so.

[Mr Mudie]

My hon. Friend is quite right. When I was a trade union official, I looked after what were termed home helps and I always appreciated that point—as I did as a councillor, just like him. They were invaluable people who went into old people’s homes, met them and formed relationships, and if they were handled and trained properly, they would report back on any change in condition they saw. That was often valuable for the old people.

If the Minister read the excellent newspaper The Independent this morning, he will no doubt have seen the article reporting the comments of the chief executive of Age UK, Caroline Abrahams. The article states:

“Care of the elderly is in a state of ‘calamitous, quite rapid decline’…with…thousands fewer people receiving care than five years ago.”

She spelled out the fact that the number of people receiving home care has fallen by a third since 2010.

Places in day centres, where lonely, vulnerable adults could find warmth and companionship and escape cold, empty homes are down 66%. Incredibly, in the area that my hon. Friend just mentioned—equipment and adaptations such as rails and stair lifts—40% fewer people now receive help. I say that is incredible because everyone accepts that such adaptations and aids help old people stay in their homes. Often, they save their lives, but they are certainly a method of preventing them going prematurely into residential homes or hospital beds, yet the money has been cut and 40% fewer are being helped.

The article continues:

“Ms Abrahams said that hundreds of thousands of older people were being left ‘high and dry’.”

It goes on:

“‘The lucky ones have sufficient funds to buy in some support, or can rely on the good will of family, neighbours and friends. But there are many who are left to struggle on entirely alone,’ she said.”

I remind the House that that is the chief executive of Age UK, the leading charity for old people.

The Care and Support Alliance pointed out that population changes mean that more people need care, but, as we know, fewer people receive it. There have been further cuts to adult social care budgets in recent years, and a 26% reduction in the number of older people receiving state-funded services, despite the Personal Social Services Research Unit having predicted that demand would increase by 17% between 2000 and 2020.

The picture is the same among working-age disabled people, 90,000 of whom lost access to state support for their care needs between 2008 and 2013. The alliance says that there is a “chronic underfunding” of care. With local authorities having had to find significant savings owing to reductions in Government grants, there have been further cuts to social care budgets in recent years. The Association of Directors of Adult Social Services and the Local Government Association estimate that about £3.53 billion has been taken from adult social care budgets during the past four years. In the last year alone, 40% of the total savings made by local authorities were achieved through reducing adult social care services. That is quite an alarming figure, but perhaps understandable. That has resulted in a tightening of eligibility for care at local level and of the size of care packages for those who remain eligible. When discussing the Barker commission’s recommendations for more funds and the options that had been set out, the CSA commented:

“What is no longer an option is to continue the current chronic underfunding of care.”

I hope that in the short time available to me, I have allowed the voice of representatives to be heard and put on the record—not partisan politicians but those working in the service full time, who know the people, the finances and the difficulties. What it all adds up to is something that has been known in this place for some considerable time—the service is underfunded, at a time when it is recognised that there are additional pressures and that there is a need for more money, not less. We all know that. It has been known in this building for at least 10 years, covering two Governments. People told us until they were blue in the face that more money was needed, because there were more older people who were living longer and had greater needs. Yet because of elections, I presume, everybody dodges the column and no one has made the difficult decision about how we put money into the service. There should have been a public debate along those lines, to show people the quiet neglect of vulnerable people that is happening every day, in almost every street in our communities.

[Mr Cunningham]

The situation is a little worse than that. We are really going back to about 30 years ago, when local authorities were forced into doing deals with the private sector for old people’s care homes. Recently, we have witnessed some of those care homes going bankrupt, which means closure and a lack of places for people.

[Mr Mudie]

It is clear that my hon. Friend has read my speech; I was just coming on to the privatisation of adult care services.

I hope that I have highlighted in my remarks the important role of local authorities in the sector. As an ex-councillor, I instinctively have much sympathy with the difficulty they face in having to take some very difficult decisions about priorities in the face of the Government onslaught on their budgets. Leeds, my home authority, has faced a tremendous task in running a city when it has had to find £250 million in cuts during the period of the first spending review. Having achieved that, it is now dismayed to hear the Chancellor threaten—indeed, promise—further cuts until 2018, if he gets back in office. In fact, Leeds has been told that it will face a budget cut of £46 million in 2015-16. Other councils face similar problems, and I simply do not know how the Chancellor feels he can order those huge cuts and still have our major cities being run and our elderly and disadvantaged being properly cared for.

I was alarmed when I was informed that a dementia residential and daycare home in my constituency, The Green, was being closed, and that many hundreds of home care workers were also losing their jobs. When I looked into things, I discovered that, chiefly as a measure to keep the city intact financially, the council had had to act in line with other big cities and had taken two unfortunate steps.

The first, which has been mentioned in passing, was to raise the criteria level at which help should be given. This meant that new applicants would have to meet higher eligibility thresholds than before. Parkinson’s UK and the National Autistic Society are two organisations that have pointed out how the new criteria put their members at a disadvantage when it comes to receiving help. The Government have legislated on that point in the Care Act 2014, and although that meets the Government objective of ending postcode unfairness, it also legitimises local authorities, or rather strengthens them, when they have to turn people down because they have needs that are lower than the criteria require. Those organisations have given evidence on how the quality of life of individuals with either Parkinson’s or autism has been diminished. I hope that the Government’s decisions will be reviewed in happier times.

What is more difficult to review is the point that my hon. Friend the Member for Coventry South (Mr Cunningham) touched upon—the decision to outsource adult care services. That has been done to help meet the shortfall in Government grant. Perhaps I am paranoiac—I probably am, because I think paranoia keeps us safe—but I wonder whether that is what the Government intended. Many people have been outraged by the Government’s propensity to privatise much of the NHS, but thanks to the love that the British public quite rightly have for that unique and wonderful organisation, the Government have backed off from adopting a full-frontal approach and are now taking a more subtle, if not devious, approach.

So quiet has the handing over of care homes and home care staff been that it has rarely been picked up by the general public, except by the clients of those homes and the ex-local government staff themselves. There is a growing awareness of 10-minute visits and the failure to provide elderly people with the same carer; providing the same carer is an important part of home care, so that people can build a relationship with them and trust can develop. The former staff are aware of the loss of local government wages, the use of zero-hours contracts and the loss of payment for travelling time, which accounts for those 10-minute visits.

I will just depart from my script to say that that situation is not surprising. If a council outsources contracts and there is a duty to save money, given that those contracts primarily involve labour, the only way in which money can be saved is to hand them over to a private company. That company would have no compunction in offering lower wages, no travelling time, worse holidays and worse sickness schemes. That is what has happened in the majority of cases.

[Mr Ward]

Does the hon. Gentleman accept that, in many cases, the private sector businesses are effectively offering wages that are below the national minimum wage, as a result of the commissioning process? In some cases, they are being given only enough money to offer no more than £12.50 or £13 an hour, which cannot cover all the costs of travel, transport, uniforms and training. That means that the private sector businesses are often almost being forced out of business.

[Mr Mudie]

I totally agree with that. Now that the local authorities have pocketed the money, it is clear that they are pressing down on the private firms, and we are a step away from the disaster of the private firms just going, “There—that’s it.” What happens when we have closed all our residential homes? There is a real problem building up.

I am sad that financial pressures have forced councils to do that. The care of the vulnerable elderly is a service that, just like hospitals, should remain in the public sector. The various scandals in care services have underlined the temptation—indeed, often the necessity—of people in business to do more than cut corners when looking after people who are helpless. I am less than convinced that the Care Quality Commission, with its proposed risk-based regulation, is any better than its predecessor, which turned out to be disastrous.

In Leeds, thanks to the protests by staff and unions, the public unhappiness over the closures and the sagacity of the council leader, Councillor Keith Wakefield, the decision on care is under review. I understand the pressures that the council faces, but I hope that it makes the right decision.

I will end my remarks by asking the Minister three questions, which, if past debates in this place are anything to go by, I will not receive answers to; I am referring not to this Minister but to his disreputable colleagues. I know that this Minister is a man of honour.

First, is any discussion taking place about putting adult social care, which is closely affected by and connected to hospital care, inside the ring fence? Secondly, are councils under any instruction about privatising or outsourcing adult services? Thirdly, is any Government legislation preventing councils, in commissioning work, from inserting provisions stating that wage and working conditions should be at a specific level?

I know I am crowding the Minister’s time, but I shall take just half a minute more. I was once in a group of people in sheltered housing discussing some problems, and I met an old lady of 90. She said, “I’m 90 and I haven’t had a bath for two years.” I started back. She said, “No, I do my best to wash myself standing up, but every time the door opened and the home care worker came in to bath me, I was getting a stranger. I may be 90, but I have my self-respect and my dignity, and I want to keep it.” That is happening to too many of our older people. They are vulnerable, they are being treated badly and they are neglected. It is about time that not the Minister, but the Chancellor woke up to this.

NHS Patient Data

George Mudie Excerpts

Thursday 27th February 2014 Westminster Hall

[Mr George Mudie (Leeds East) (Lab)]

It is a pleasure to serve under your distinguished chairmanship, Mr Bayley. I must compliment the hon. Member for Mid Norfolk (George Freeman). I have always regarded him as a talented man, but when a man can speak, take a telephone call, say who has rung him and switch the phone off without breaking a sentence, that is real ability.

I should almost apologise for daring to speak after the hon. Gentleman. I am at pains to say that I am not putting the opposite view to his. I had a debate last week. I only had half an hour to share with the Minister, but I gave up five of my valuable minutes to allow the hon. Gentleman to speak.

I do not see the debate as having two opposite sides; I see it as two different responsibilities or objectives that should be rolled into one objective. The hon. Gentleman spoke today for more than three quarters of an hour, and all but five minutes were on the medical side.

I said this last week—I will say it again—but I do not challenge the medical benefits of the exercise. I concede that medical improvements will flow from it. Those benefits are accepted and encouraged, but the other side is personal privacy in the important field of individuals’ medical records. There were indications, but I am not sure that the common ground was in the five points he made. We must search for common ground, but I will show the hon. Gentleman and the House why it is difficult to find.

This is not a dialogue; NHS England and the body with the long set of initials that was set up are not listening. They do not intend to listen or allow the public a real choice in the matter—that is the problem. If those bodies did as the hon. Gentleman said and saw the matter as, “If we are going to do this, we must gain the trust of the public”, we would all be in a better position. However, I do not see that as their objective, which has always been to get through the formal parliamentary Committee and medical-world structure. The less we know, the less interference from us and the fewer decisions we are allowed to take, the better, because the world will be better. Well, the world will be better medically, but the dangers that we are spelling out, in terms of putting every person’s full medical records on a database, worry us.

The dangers worry us in two ways. The first is the bringing together of the databases into one huge database, where all the information about an individual patient is stored. That is an important technological computer problem—a difficult problem that has to be argued out. The second worry, which I think is the greater, is also difficult. The exercise so far would not lead an objective member of the public to trust the authorities. The worry is about the flow of information out of that database to people outside the national health service or social care.

I have in my hand the document that has caused the fuss. It was sent out as junk mail, delivered on a Monday morning with all the other junk mail; the post office has a standard way of delivering it. A person gets their pile and looks for an individual letter—no. They know it is Monday, so the pile goes into the bin. That was how the document was delivered. Some 65% of the people who were polled, “Did you read it? Did you receive it?” said no.

Mr Bayley, you are a long-established politician. You know the number of times we deliver manifestos and leaflets to houses in an election. When we then go round, people say to us, “We never hear or get anything from you.” The public’s memory of what goes through the door is pretty short, but when things come in with junk mail, that is understandable.

The real objection, however, is inside the document, and we have heard about it today. The front page is the front page. The inside pages contain the lot, including “Introduction”; “What are the benefits of sharing my information?”; “Information will also help us to:”; and “What will we do with the information?”. It is all favourable. It is all on the medical side. That is not disputed, if we get the data together and look at complaints and how they are handled. I am a lad who is into computers and databases in politics. Databases transform information in ways one could never do with pen and paper. That is conceded and encouraged, but what about the other side—the disbenefits?

I challenge anyone to find from this piece of paper the down sides or things that we have to worry about that the bodies would like to discuss with us. They are not there. The document has two pages saying that the system is great and that it will do wonderful things, and then it has a section called, “What choice do I have?” Anyone getting a piece of paper like that would read two pages, be switched off before that, and say, “When we have to opt in, why would I want to opt out? This is wonderful.” Having listened to the hon. Member for Mid Norfolk, it is wonderful, so why would anyone want to opt out?

Let me discuss some matters of trust, because that is what the issue is all about. I have been in the House for 20 years, and I do not trust Governments. I would not tell people to trust Governments, whether Labour, Liberal or Conservative. I would say to people, “Put your trust in God if you wish, but don’t trust Governments”, because the state and Governments have a life and interest of their own. The document is an example of where something has been decided that might ruin the life of anyone sitting in the Chamber, especially those sitting on our Benches. We all know, as politicians, what happened to data that were secure beyond any reason—our expenses. How secure was that database? What damage it did! It killed people and imprisoned people, and it brought us down to below journalists, estate agents and perhaps lawyers in the esteem of the public. That was a “secure” database.

Is there such a thing as a secure database? That is one of the arguments, but I am still talking about trusting the Government. Do not trust the Government. Let me take the five things the hon. Member for Mid Norfolk said about what we should do. Four of them are about the Government and public bodies.

I serve on the Treasury Committee. We have gone through the banking world. Theoretically, everyone who matters to the financial world reports to the Treasury Committee. They appear for an hour—two, if pushed—before the Committee once a year, and they have been accountable to Parliament. I remember the lad who ran the Financial Services Authority coming before us. We were discussing, I think, the withdrawal of cheques. I said to him—I was in the Chair, I think—that the public were outraged by the proposal, especially the elderly. I said, “The Committee is outraged by it. We would like you to go away and withdraw the threat to cheques. Will you do that?” “No”, he said. “I am the regulator. I do not answer to Parliament. I have statutory powers. You will have to convince me.” Those were his exact words.

Reporting to Parliament is a form of pompousness on our part. What on earth do they report to Parliament about? How do they do that? When do we see them? When do we question them?

We can look at the Annunciator monitors in the Chamber. I commend the ability of the hon. Member for Mid Norfolk to speak for nearly an hour; his speech on the subject was important enough. However, if you, Mr Bayley, were speaking in the debate that was on the Floor of the House while the hon. Gentleman was speaking, you would be talking about an important subject—the treatment of welfare beneficiaries—and you would have had six minutes. Six minutes—that is accountability to Parliament. That is the ability of the majority of parliamentarians to raise an issue. This debate is a rare event.

The hon. Gentleman talked about duty of care and a bill of rights for patients. Well, we have a duty of care in the health service. It was good, was it not? We have had it since ’48. But what happened at Mid Staffordshire? The duty of care was there. A document such as the one I was talking about matters little; the issue is about how the service is run and what happens on the ground in reality. All those patients were protected by the duty of care. All the people who died had that duty of care. It was supposed to be wonderful and supposed to protect them—but we would want a bit better protection now.

“We will make the data release body a statutory body” sounds fine, but who appoints to that statutory body? The Government appoint, one way or another. Who appoints to the committee or body that released the leaflet I was talking about? The Government. “Yes Minister” has not disappeared from our memories, so would we expect someone from York who works on the railways, for example, to be on that body or on any body appointed by this building? No. Would we expect to see a permanent secretary or an ex-permanent secretary on this great committee? “Yes Minister” would say we would.

Public sector pensions are not what they were, and we cannot have a permanent secretary retiring without having a side job given to him—and he will behave himself, or he will never get another one. Surprise, surprise, on the committee I am talking about, there are two: one from the Ministry of Defence and the other, the interim chief executive who is just leaving, from the Department of Health. Trust Government! An inquiry, a review, a statutory body or a quango—what is the first criterion for people being appointed? They behave themselves—that they are a safe pair of hands. That is the reality.

The only one of the five points made by the hon. Member for Mid Norfolk with which I totally agree is the last one, and I would push it a bit further. Misbehaviour on data of such sensitivity should not involve a fine. When the pharmaceutical or insurance industries are involved, or even the media, the penalty should be jail. The information in the file of people with a sensitive medical history could lose them their career, job, marriage, relationship or even life. That is what is in those files. That is why when we go and unburden ourselves to the doctor, we should be secure in the knowledge that what is said in the doctor’s surgery stays in the doctor’s surgery. I am not opposing records coming out, but what about the basis on which people outside this building or the national health service will have access to and be able to identify those records? Trust—we are going to trust them.

What about the prevarication over opting out? How do we opt out? I have found out about this issue in greater detail over the past two months, but how do I opt out? I have not opted out yet, because there is more than one form to fill in when doing so. On Tuesday, the Secretary of State was asked whether opting out could be done online or by telephone. Apparently, we can do it on the telephone if we are able to get through to the doctors and get a person answering, rather than an answering machine, and we can go online if the doctor is online.

Yesterday, I met a nice gentleman sent from the organisation involved—it was a pleasure, and interesting, to meet him. I asked him about opting out. He said, “Opting out is a matter for the GP.” I had asked why there was not a full-page advert in the paper explaining the arguments in favour and the worries, saying to people, “Make a balance. It is your decision. It will affect you” and including some opt-out forms. “We cannot do that”, he answered. “The GP is the holder of the data, so GPs should do it.”

What is the situation on opt-out? It is the biggest argument and the biggest concern. If we listen carefully to the reasons for concern, the medical side do not want us to opt out. The more people who find out what could happen to their records, the more who will opt out. If the authorities were straightforward, such is the way of things that the number of people who opted out would be a small proportion of the population. Rather than trust to that, they have taken the decision to minimise opt-out in a most dreadful way.

We are told to phone and make an appointment with our doctor to discuss opting out, but we have little chance of doing that even if we have lung cancer. We do not have a chance. With a medical complaint, when we try to see our doctor, the surgery says, “Ah, well, we might be able to see you next week. Can you take a day off work?” What person will take a day off work to discuss opting out? That is absolutely nonsensical and not of the real world. They want us to say, “Forget about the opting out.”

Furthermore, before leaving that subject, if people opt out, they should not think that their details will not be in the database. They will be going into the database. The point of opting out is that any information going from the database to someone else, will have the personal information taken out—date of birth, postcode, gender and all sorts of things that can identify someone. We might opt out, but our records are still in the database.

Why should we trust the authorities? I am not as articulate as the hon. Member for Mid Norfolk, but I do not have to persuade people. As Nye Bevan said,

“Why look into the crystal ball when you can read the book?”

All the patient records of everyone in the Chamber who has had hospital treatment in the past 10 years were sold to a firm of actuaries, who passed the information on to insurance companies. As a result, the insurance companies have 47 million records.

Of course we can trust Government—Government are great! We can trust the word of an individual who stands up to say, “The security is great.” Yes, we can, but that same institution then allowed all our hospital records to be passed—in fact, sold—to a firm of actuaries. Thanks to The Daily Telegraph, we know that that happened and that the information was analysed and put into a form that insurance companies could use to put up premiums for individuals and certain groups. As a result, we are paying higher premiums. That was our hospital records—“They are safe with us.” I might be getting a bit bitty, but I can pass the article to the Minister, if she wishes.

Another article was bigger—a whole front page—but I have not brought the one that I was going to speak about with me. I think it was yesterday, or the day before, in The Daily Telegraph, or The Guardian. It reported that a private firm had been in discussion with the body that is holding our records and building up the database, because it wants to buy the records, and it wants to buy them quickly. We have to ask about that individual company having discussions before the matter is even agreed, but the interesting point was at the end of the article. Not only was the company set up to deal with pharmaceutical firms—that is already straightforward—but the owner set up another company and stated that among the clients would be pharmaceutical companies. That is the word, “among”. We have to ask who the other customers are—the ones that have not been named. If the pharmaceutical companies are in there, the insurance companies will not be far behind.

In terms of trust, however, the worst thing is that spokesperson for the body in question has said that that company has been told that there will not now be any prior discussions and it must make an application in the normal way, with others, at a later date. What does that spell out—that “not now”? Two days after the balloon goes up, we go into the second period of re-examining the scheme and the matter is in all the papers, the spokesperson suddenly says, “We are not now going to have prior discussions with the firm.” I am sure the Minister will say what in fact the Secretary of State said on Tuesday in the House, namely that that sort of thing went on before, but things have been toughened up. Well, the Secretary of State has toughened things up so much that private discussions are going on with an organisation that we would all wonder about.

A further issue about trust is this: the records were going to be uploaded to the big database last autumn, but the process was stopped because some information about it came into the public arena, and the organisation took fright and said, “We will look at the situation for six months.” Those six months, which run out on 1 March —that is, this Saturday—were used to produce the leaflet I referred to. For all that the hon. Member for Mid Norfolk says about improved efforts, that was the response. It was told that it would have to tell the public about the programme and get the public onside, and the leaflet is what it produced.

This Saturday the records would have started to be uploaded—indeed, there is a suggestion in some minutes from the HSCIC that maternity and children’s care records are already being uploaded. I will have to look at the exact wording of the board minutes, but that is worrying. In three months’ time, all the records would have been in the database and the job would be done, but that was stopped because of the fuss, including in this place. However, the trust is gone. The process was stopped because the public had to be told more, but who in this room feels we have been told more?

Now, the process has been stopped again, and what has the body responsible said publicly? It has not done what the hon. Member for Mid Norfolk did in his speech, in which he gave us some information and set out some starting points for discussion and dialogue to help improve things and to bring people together—I am grateful to him for that. Instead, it has said consistently in all the press releases that it is delaying the scheme so that it can persuade the public how good it is. Perhaps it will send out the hon. Gentleman’s speech. That would do the job, because it was wonderful—I could not fault it, as he told us all the conditions that could be improved.

Members who are not present could put this case better than me. There are genuine worries. We represent people whose records are going into the database without them being aware of what is happening. Questions have been raised by both Government and Opposition Members, and what does the organisation responsible do? It cancels the process for another six months in order to improve a leaflet.

There was a little light earlier this week, with an article in The Times—it was only a short one, but every little bit of light is welcome—saying that the bodies responsible have broadened their approach: they are now aware that there are dangers in pulling all these data together and that the question of security has to be taken more seriously. If that has pushed producing another leaflet to one side, and they are working on that instead, I think the scheme is back on the table. Nobody wants to kill it. I have not met anyone who wants to kill it, or anyone who does not agree that the basis for the scheme is first class. All we want is for our voices to be heard. I represent 60,000-odd people, all of whom have medical records. How could I look one of those people in the eye and say, “I had the chance to stop your private details being attached to your medical records, but sold out?” We have to do something to ensure that security is as good as it can be. It is about trust.

On 15 January this year, my hon. Friend the Member for Newcastle upon Tyne Central (Chi Onwurah) asked a question in the House on this matter, just before the hon. Member for Mid Norfolk. The Minister here today is very good, but in a way I am sorry that the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich (Dr Poulter), is otherwise engaged—he is the Minister who gave me a bad time when I raised the same point last week—as he answered the question from my hon. Friend the Member for Newcastle upon Tyne Central. She asked him:

“Has a risk assessment been carried out for the extraction service”—

that is, the extraction of GP records—

“and, if so, will he commit to publishing it and any recommendations made?”

Now that is a perfect question—educated, specific and designed to ease the worries of the general public. What answer did she get? It is parliamentary scrutiny at its best. Asked a specific question, the Minister said:

“We have, of course, constantly assessed it.”

He went on to say:

“I hope the hon. Lady is not criticising the principle of improving and joining up care”.—[Official Report, 14 January 2014; Vol. 573, c. 702-703.]

And there was more of that. Will the Minister tell us—I will be happy if, even with all the resources behind her, she has to answer in writing—whether a risk assessment has been carried out on the extraction service and, if so, will the Secretary of State publish it?

I will say, mischievously, that it does not really matter, because The Daily Telegraph has published extracts of the risk assessment—probably, hysterical extracts—so there is one, and it raises many questions. I do not say that in a hostile way. Thank God somebody who is not a hysterical parliamentarian or a computer whizz but is regarded as sensible has examined the scheme and said that there is a risk. All we wanted was for that to be acknowledged. We simply want a wee bit of movement, to get the maximum possible medical improvement with the minimum of risk to the security of the personal medical records of the general public.

I have a further point about trust—I see you looking at the clock, Mr Bayley, but it is such a pleasure to be serving under your chairmanship that I want to milk every moment. Even this week the Secretary of State was asked a question by the hon. Member for Totnes (Dr Wollaston), who is such a bright and straightforward colleague of the Minister’s in the Conservative party. She asked about those 47 million medical records that were sold to insurance companies, and she was talking about trust—

[Hugh Bayley (in the Chair)]

Order. I am not asking the hon. Gentleman to terminate his speech, but perhaps he would sit down just for a moment. I must vacate the Chair now, and my colleague will take over. We have had plenty of time for two speeches from both sides of the Chamber and they have ranged widely, but two more Members want to catch the Chair’s eye. The wind-ups will start a little before 4 o’clock, so I hope that the three Members concerned will keep an eye on the clock to ensure that everyone has a reasonable opportunity to express their views.

[Mr Mudie]

I apologise, Mr Bayley, and I apologise to my colleagues. I understood that only one other Member was on the speaker’s list.

[Mr David Amess in the Chair]

The hon. Member for Totnes, a Conservative, said:

“Nothing will undermine this valuable project more than a belief that data will be sold to insurance companies, so will he”—

the Secretary of State—

“set out the way in which he will investigate how that sale was allowed to happen and categorically reassure the House that there will be no sale of care data to insurance companies?”

The Secretary of State’s reply was long, but I will give only the first sentence:

“My hon. Friend is absolutely right to raise that issue”.

What issue? She raised two.

He continued:

“I am happy to give that assurance.”— [Official Report, 25 February 2014; Vol. 576, c. 147.]

What assurance was he giving?

May I ask the Minister what the Secretary of State intends to do—I do not need an answer now because the matter is in his head—and whether it will be something disgraceful? The BBC totally ignored the fact that 47 million patient records were sold outside the national health service. The Secretary of State’s colleague, the hon. Member for Totnes, asked him to conduct an investigation and give a specific answer.

The Secretary of State said there would be no sale of care data to insurance companies. That reassurance means nothing because the data will not be sold. There will be an appropriate charge to meet administrative costs. NHS England wanted to give it away for nothing, but the HSCIC said it would charge £1 for each data record to cover its costs. Will care data be moved to insurance companies directly or indirectly? Will the Secretary of State tell us in writing how he will ensure that such data do not land in the hands of insurance companies? He has given one of those assurances, and we will find out which one.

The refusal to acknowledge the security risk is at the heart of the issue. One objection is that all the data will be brought together in databases, whatever the hon. Member for Mid Norfolk says. He will remember that I asked how there could be a guarantee that they will not be breached. What is the answer? I will give the answer. They will be breached.

You may remember, Mr Amess, that a Glasgow man in his 20s breached the Pentagon’s database from his bedroom out of curiosity. The US Government wanted to extradite him to America but we fought against that. I asked the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich, whether he was telling the House that the patient database is more secure than that of the Pentagon? I did not receive an answer, so perhaps the Minister will tell me now, because the Pentagon would like to know.

Will the patient database be more secure than Barclays database, from which the financial records of 27,000 customers were stolen? The computer world says that there is a constant fight to keep databases safe from eastern European countries and there are even cyber attacks in China. But we are being asked to accept that the NHS database will be so secure that it will never be breached.

How do the Government expect to obtain trust if they do not accept that there are limits to security, and that steps should be taken to protect such sensitive data? It is fine for the medical profession to have access to the actual records, because that is what it is interested in, but it is not fine to be able identify individuals. How many people live in one postcode? It could cover a whole street, or a couple of streets. If the age, gender and date of birth were available, it would not be difficult to identify an individual. That is what we are facing, and we want the Government to do something about it.

An extremely worrying suggestion from a good source is that GP databases will be put into a huge centralised database. I have been reliably informed that those databases are not in the GPs’ offices. They do not have separate databases. I have been told that data are sent to three private companies to be stored. I would like some reassurance that that is not so, but if it is the House should be told the basis on which those databases operate, what safeguards exist, and the criteria for the release of those data.

No one in the Chamber would trust the judgment of an organisation that entrusts so much sympathetic and sensitive data to Atos. It is probably deservedly one of the most despised public companies. The fact that it is French does not come into the picture. That does not matter. We laugh, but it is outrageous. It must have been mentioned in every sentence during the debate on welfare benefits. It received millions of pounds from the Government and, if I am charitable, over-extended its remit by putting people off disability benefit in enormous numbers and sometimes tragically. The Government have not sacked it; it decided to walk. However, the Government have now decided that it is such a good firm that the contract for uploading the patient database has been handed to Atos. It is unbelievable. If we are talking about trust, trust implies confidence and judgment—the people we trust must have that—so they have appointed Atos.

I simply say that trust is being lost daily. What we do in the next six months is important. As the hon. Member for Mid Norfolk did, I shall make some suggestions. There must be an urgent and transparent exercise to deal with concerns over security. There must be a streamlined, clear and convenient way to allow people to opt out and there must be massive steps to minimise identifiable data, or data being easily identified to an individual.

It is said that those conditions should be independently scrutinised—that is on the hon. Gentleman’s wish list—by some sort of board. To tie that in with what I said before, I would prefer somebody who has been writing these articles in Computerworld to be on that board. All the things that have happened—I accept that I have taken some time to spell them out—have happened, and trust has been lost. If we are saying that we will get a group of people together and try to bring together the two sides, one way to do it, as we normally do in politics and political life at a lower level, is to have some of the people who are criticising the thing on the board. That would give the public the greatest assurance that this is not a bunch of hand-picked people.

This matter is very important. I am sorry that I have taken so long, and that I am the man who has agreed to work for four days this week and all my colleagues are elsewhere, but there we are.

Medical Records (Confidentiality)

George Mudie Excerpts

Tuesday 11th February 2014 Westminster Hall

[Mr George Mudie (Leeds East) (Lab)]

It is a pleasure to hold this debate under your distinguished chairmanship, Mr Hollobone.

The debate deals with one of the most accepted and appreciated relationships, which is that between patients and their doctor, with the knowledge that whatever information is recorded by the GP is confidential and kept securely in the medical records held by the practice. Next month, that will change. Under controversial legislation passed in 2012, family doctors will be required to pass to a new national database created by NHS England all the medical records of the patients in that practice.

The personal GP record may be added to by any other social care organisation that deals with the patient and with hospital records that exist for an individual. This is being done, according to NHS England, to improve the delivery of health care to benefit researchers inside and outside the national health service. I have no reason to suggest that this move will not lead to improvements in health care, and, no doubt, the Minister will deal with that matter more fully.

I have sought the debate for two main reasons. My first concern is shared by many people, including some present in the Chamber: the security dangers of bringing all such personal data together in one huge national database. The second reason is my dismay and even anger at the deliberate manner in which the public have been deprived of consultation and information on what could be, and I think will be, a significant threat to their right of privacy in respect of their medical records.

On the first threat, to security, we are assured by NHS England that the information

“will be stored…in a secure environment with the highest standards of information governance and technical expertise to protect the data.”

If patients are reassured by that statement, the US Government must have lower standards. For example, Angela Merkel, the German Chancellor, learned about the USA hacking her personal phone from sources inside the US. A young lad from Glasgow was extradited to the USA in the past 19 months to face charges, because from his Govan bedroom he had breached military systems in the US. This weekend, closer to home, Barclays bank admitted that delicate, sensitive and important financial details of 35,000 of its customers had been stolen.

[Dr Julian Lewis (New Forest East) (Con)]

Does the hon. Gentleman believe, as I do, that the single most important point, which I hope that he will elaborate for us, is whether the identities of the people whose data are being stored are also being stored? If they are being stored, I am entirely with him; if they are not and only data without identity are being stored, there might be more to be said for the scheme. I am interested to know what he has to say.

[Mr Mudie]

That is an important intervention, and I will deal with that, because it gets to the nub of the matter. Health care improved, fine, but there must be a balance with the right of individuals to have their privacy. I will deal with that.

[Mr David Davis (Haltemprice and Howden) (Con)]

Importantly, the fear is not only of professional hacking, but of amateur hacking, which can break into major databases. The problem about the medical database is that someone’s medical data are almost as strong as a fingerprint. If people were looking for me, for example, I have five broken noses on my medical record, which probably reduces the numbers that they are looking at from 60 million to about 100; they could also probably work out my age, if that is removed, from when I had my diphtheria jab and various other early jabs. It is still possible to reverse engineer from so-called anonymised data. In the States, that was done with an anonymised data system—the record of the Governor of Massachusetts was picked out by an academic, to demonstrate how weak such systems are.

[Mr Mudie]

I read with interest about the right hon. Gentleman’s unfortunate nose. He makes an important point.

My point is that there will eventually be a breach of security. It is inevitable, given the size of the database and the information stored in it. The human cost to the patient whose identity and medical history are made public is potentially disastrous. Careers could be ended, jobs lost, insurance refused and relationships destroyed if sensitive medical facts are made public or used by private firms, other people or, indeed, the media.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this matter to the House for consideration. He said rightly that there is a medical need to have some of the information, but many patients fear that their confidentiality could be taken over by money-making ventures from those involved in the process. Instead of an opt-out system, should there not be an opt-in system, whereby the GP and the patient get together and discuss confidentiality and an understanding of the system before anything happens?

[Mr Mudie]

The hon. Gentleman makes an important point, which I will cover when discussing the second issue that I identified. At the moment, I am dealing with security, but I will come on to the opt-out arrangements, which are far from satisfactory.

A further reason for concern is that the information will not be available for analysis and research in the national health service alone, but will be made available to non-NHS organisations. A Library note describes an interesting situation in which, without the consent of individuals, the information given can identify patients:

“In most cases, researchers can carry out their studies using information that does not identify you. Occasionally, however, medical researchers need to use information that does identify you. Only researchers who have obtained your permission or who have been granted special approval are allowed to access your identifiable data… The CAG approves requests where it is not possible to use information that does not identify you and it is not possible to ask you. There are a variety of reasons why it might not be possible to ask people; for example, where there are extremely large numbers of patients”—

so it is okay if researchers pinch a lot of patient information and identify the patients, but such patients would have no come-back, because that is reasonable in the eyes of the national health service.

Another interesting but concerning document includes a diagram helpfully provided by the Information Commissioner that describes three different levels of anonymity. First, in the public domain, there is no information—none. It is totally anonymous. Secondly, for approved organisations, whether NHS or outside organisations given permission, there is potentially identifiable data. Finally, organisations that have a legal basis, such as the police, have all the data—nothing is hidden. Interestingly enough, the police will not have to do what they have to do now, which is to get a court order to get the information; they will have an automatic right to it.

NHS England has explained that information given to private researchers will be anonymised before release, but that is undermined by its statement that the standard of anonymity it is using requires it to

“ensure that, as far as it is reasonably practicable to do so, information published does not identify individuals.”

That is hardly reassuring.

All those instances could be dismissed as speculation, but we should be aware that NHS England and the Government see the whole exercise as an opportunity for the UK to become a major player in medical research, with both the NHS and the private sector seeing strong economic growth and income from the use of the data. I forgot to mention that in the database will be included people’s national health service number, postcode, date of birth, gender and ethnicity. With all that information—particularly the postcode—it will be fairly easy to identify someone.

I turn now to the question of permission. This genuinely makes me very cross. The handover from GPs will take place in March—one month’s time—and after three months, depending on opt-out numbers, 100% of records will be on the national database. That should have happened already, but the Information Commissioner stopped the process late last year because the NHS had not consulted or, in the commissioner’s view, given enough information to the public. The commissioner ordered the NHS to postpone the process and take steps to give more information on both what was happening and the right to opt out. It has been given £2 million to do so, but it is far from clear that it is doing it willingly—it is doing it in bad grace.

I should mention the summary care record, another IT exercise that was carried out five or six years ago, more limited in its function but with the same organisational structure. A key element was that, unless a patient objected, their records would automatically go on the database. That tactic of forcing people to opt out rather than in was successful and with summary care records only 1% of patients in the pilot schemes opted out. There was a discussion about what system should be used for opting out for the new, greater system, a report was written, and surprise—officials chose the opt-out. With no real publicity, involvement or consultation, they have reckoned from the pilots that that might be the result nationwide. I thoroughly object to that.

NHS England published a leaflet, which might have come through Members’ doors, that supposedly meets the Information Commissioner’s request, but it is so bland, patronising and uninformative that it seems to have been written, miraculously, by a dead author—Enid Blyton. It is an insult to the general public. Opting out is not actually spelled out within the leaflet. NHS England is demanding that people go to their doctor’s surgery, discuss the matter with a doctor or practice manager and then give their decision on opting out. The House knows how busy doctors are and how busy their surgeries are. Is somebody going to take a day off work to go and see their doctor not because they are ill but because they want to discuss opting out? It is not sensible.

I suggest that NHS England is not serious about involving and empowering the general public. That is the second reason why real questions should be asked about this plan. The leaflet does not make the point that there are two opt-out options, one for giving the information out within the health service and one for giving it out outside the health service, or that people can obtain a form, fill that in and send it in to a practice.

I am taking up time and I know that a colleague wants to speak. I want the Minister to take his lead from the Information Commissioner and postpone the introduction of the scheme to allow further consultation and discussion about whether there should be an opt-in or an opt-out, about what information is being shared and about the security of that information. If the medical records of members of the public are going to be given out, they should have knowledge of that and should have had the opportunity to opt out.

--- Later in debate ---

[Dr Poulter]

My hon. Friend makes an excellent point, and he is right to highlight the fact that we are talking about an evolutionary process. The health and social care information centre is not a sudden revolution. It will allow better use of information to join up care in exactly the way that he describes. It is no good having a £3.8 billion integration fund for better provision of services unless we have the right information and can join up intelligence to understand what good care looks like.

[Mr Mudie]

The two professionals in the Chamber are having an interesting conversation, but the public want to know whether the Minister is content, first, that the use of personal data will not lead to the identification of individuals and, secondly, with the present system of consultation on opting-out.

[Dr Poulter]

We already have robust procedures in place, and they will exist under the new system to protect patient confidentiality. I would describe them in more detail if I had more time, but it is worth highlighting some of the history. It is not revolutionary to store information; it is evolutionary. Hospital episode statistics started being collected in the following care settings in, I believe, the following years: in-patient data in 1989, out-patient data in 2003, A and E data in 2007-08, and primary care data from 2014.

We already have systems for collecting and analysing information, and patient safeguards exist in those systems. We will now see a system that better joins up and builds that evidence base to drive better care for patients, which is exactly the point that my hon. Friend the Member for Mid Norfolk made. We need to expand the evidence base, and it is absolutely right that we ensure patient confidentiality when doing so. I believe that we have the right safeguards in place to do that.

A number of points have been raised in the debate, and I will write to hon. Members with further clarification. I hope that that will be helpful.

Mid Staffordshire NHS Foundation Trust

George Mudie Excerpts

Tuesday 19th November 2013 Commons Chamber

[Mr Hunt]

We have avoided setting up a new structure or body in our response to the recommendations made by the right hon. Member for Cynon Valley. As for how we will make sure that this happens, I agree with my hon. Friend that the ombudsman is the final port of call if someone is not satisfied with the way in which their complaint has been treated. That is incredibly important, and the ombudsman has herself agreed that she will handle vastly more complaints and go into detail a lot more than she does at present, which is welcome. Prior to that stage, however, lots of people feel that complaining directly to the trust, which has to be the first step, is a very daunting and difficult process and that they want independent help. That is why we have said that it will be an absolute requirement for trusts to show people how they can access that independent help and, indeed, to be prepared to make the finance available so that they get that help. There will also have to be signs on every ward telling people exactly how to do that.

[Mr George Mudie (Leeds East) (Lab)]

The Secretary of State will agree that the ethos and culture of any organisation start at the top. Over the past three decades, the boards have moved towards being composed more of practitioners and businesses than of consumers and patients. Will he consider putting an independent voice, or independent voices, on the boards so that the complaints go to a board that will listen to and debate them? Will he also consider advising trust boards to set up a formal structure up to board level so that complaints can arrive there, be seen and discussed?

[Mr Hunt]

The hon. Gentleman is right that reporting back about complaints to board level is a fundamental thing that should happen at every trust. We also need to make sure that all trusts are putting patients first; they will not be able to get a good inspection result from the chief inspector of hospitals unless they do so. The hon. Gentleman will know that the new structure of foundation trusts is designed to make sure that FTs are run for the benefit of their patients by the large number of members who are effectively the governing body of FTs. The hon. Gentleman is also right to say that this is not happening everywhere, and that is why today’s changes will, I hope, make a big difference.

Children’s Heart Surgery

George Mudie Excerpts

Wednesday 12th June 2013 Commons Chamber

[Mr Hunt]

There will be a reduction in the number of centres at the end of this process, as is clear from what the IRP report says. It thinks we would have better outcomes for children if we concentrated surgery in fewer places, with more comprehensive facilities offered in all those places. However, we need to get the process right in order to get there.

[Mr George Mudie (Leeds East) (Lab)]

I thank the Secretary of State for, and congratulate him on, his decision. However, as an outsider I watched this process descending into almost a medical beauty contest, with comparing and deciding. Surely if we are rationalising the centres, the key starting point should be their placement for the maximum benefit of the populations, the patients and the parents, not this business of who has the lowest mortality rate. Doctors can move, but populations cannot.

Heart Surgery (Leeds)

George Mudie Excerpts

Monday 15th April 2013 Commons Chamber

[Mr Hunt]

I can absolutely assure my hon. Friend that that is my intention. There is legal due process—legal proceedings are under way—and he would want that to be respected. I am also anxious to read and digest the report of the Independent Reconfiguration Panel. I would like that all to happen as quickly as possible within the law, so that we can conclude this matter and remove the great uncertainty that I know is unsettling so many people.

[Mr George Mudie (Leeds East) (Lab)]

Does the Secretary of State not accept that Sir Roger’s unacceptable remarks, which came 24 hours after the court decision confirmed the review as flawed, unfair and unlawful, have dented severely the credibility of the Safe and Sustainable review in the eyes of the public? The Secretary of State has suggested that he will wait until the configuration board comes back with a recommendation, but does he not think that it would have been better if he had come to the Chamber to tell hon. Members and the public what steps he would be taking to restore credibility to the Safe and Sustainable review?

[Mr Hunt]

I think that NHS England has taken firm action: it has said that Professor Boyle will not take any further part in Safe and Sustainable. However, the hon. Gentleman will understand that as the review is currently subject to legal proceedings, I cannot comment any further. As the final decision will end up on my desk, I want to wait until the legal proceedings are complete and I have the report of the IRP to consider before I make that decision. I stress what I said to my hon. Friend the Member for Skipton and Ripon (Julian Smith): I would like it to conclude as quickly as possible. I know that is in the best interests of the people of Leeds.

Winterbourne View

George Mudie Excerpts

Monday 10th December 2012 Commons Chamber

[Norman Lamb]

I know that some people from Wales were placed in Winterbourne View. This issue is important and relevant to Wales, Scotland, England and Northern Ireland. I would encourage officials of the devolved Administrations and the United Kingdom Government to liaise closely in order to ensure that the lessons that we are learning here can be applied elsewhere, and that good lessons from Wales and elsewhere can be learned in England.

[Mr George Mudie (Leeds East) (Lab)]

The Minister is a very humane man, and I entirely accept the fine things that are in the report. However, we are ultimately responsible for the proper treatment of vulnerable people, both in hospitals and in care homes, and fine words go only halfway. We have seen people in that sector take advantage of and abuse vulnerable people who cannot speak or fight back.

One of the key points raised by my hon. Friend the Member for Leicester West (Liz Kendall) concerned unannounced inspections, which the Minister seemed to suggest were a matter for local authorities or other public bodies. Can he tell us whether real resources will be put into that part of the operation? Whatever has been signed up to, vulnerable people have been treated so badly that we should be ashamed. If we do not provide resources that will enable us to know that someone independent has the power to enter premises at any time or on any day and inspect the treatment of vulnerable people who are in our care, we cannot be taking this issue seriously.

[Norman Lamb]

Let me respond first to the hon. Gentleman’s observation about fine words by saying that this is just the starting point. It does not do the job; it merely sets out the scale of the ambition that is necessary to address a national scandal. It is good that all parts of the system are signed up to it, because that gives it a better chance of success. I will chair a national programme board that will keep a close watch on what goes on and hold every part of the system to account.

The hon. Gentleman spoke of the horrors of what goes on in some care homes and in hospitals, but we must remember the horror of family members who went to local authorities or the NHS to complain and were ignored. That, in a way, is just as scandalous, and it must be addressed.

I have talked to the chief executive of the Care Quality Commission, David Bearn, who has confirmed that he has enough resources to maintain a programme of unannounced inspections. They will continue; they must continue, and they must include people with learning disabilities and their families. I mentioned the role of HealthWatch earlier. In every local area, its representatives will have the power to go into these places to see for themselves what is going on behind closed doors. That too will introduce a new accountability.

The final point I would make is that we are developing the idea of online quality indicators for every care and health setting, with user reviews so that individuals who have been in those care settings and their families can give their views. That scale of transparency can be transformational in driving up standards.

Leeds Children’s Heart Surgery Unit

George Mudie Excerpts

Tuesday 30th October 2012 Westminster Hall

[Mr George Mudie (Leeds East) (Lab)]

I join with hon. Members in congratulating the hon. Member for Pudsey (Stuart Andrew) on securing the debate and on the way that he has handled the campaign. He has been inclusive. He has handled it sympathetically and intelligently, and he has worked with a very good campaign in Leeds. I hope it is successful above all for the children’s unit, but it would also reflect on the hon. Gentleman. I echo his comments about the Minister. I am delighted to see an independent mind in the Department of Health. It makes such a difference, but I wonder how long it will be before those officials weigh down on her.

As a layman, it seems to me incredible to place such an important facility in Newcastle rather than West Yorkshire. Some 5.5 million people are served by the Leeds unit and 2.5 million served by Newcastle. By 2030, the population of Yorkshire and Humberside will increase by 16.5%, up to 6.2 million people. Newcastle’s will increase by only half of that—8.2%. If those figures are challenged as being only projections, in the last census Yorkshire and Humberside went up by 300,000 and the north-east by 57,000. If we are talking about placing a strategically important, sensitive service, Newcastle is not the place where the conurbations and numbers are.

When the subject was first debated, I argued in the House that we should look at Newcastle in a different light. I hate the idea of us and Yorkshire saying, “Our kids cannot go 100 miles because of this, that and the other,” but we are then put in this corner of arguing that Newcastle kids can come down and do the same thing and it is okay for them. The hon. Member for Leeds North West (Greg Mulholland) said that Scotland is content with the numbers. If the people of Newcastle wanted that unit and were prepared to have that unit, I think there is a case for leaving it, because the geographical distances cause a great problem.

In Leeds, 23% of the children are from an Asian ethnic background. In Yorkshire and Humberside, that figure is 6.2%, or 326,000. In the north-east, it is less than 70,000. I had to fight to close the South Shields immigration tribunal centre and open the Bradford centre, because I was aghast at the cost for people from ethnic minorities—the Bangladeshi community are among the poorest in the city—having to travel all that way. That is compounded when going to sit beside a child who has had surgery, and who is recovering or not recovering. The time and expense is a factor that does not seem to have been considered.

This is not the time—perhaps it is appropriate: more publicity and so on—to re-argue the case. The case has been argued. The case is stated. It is how this review body carries out the review. There are fears that the panel will not address the accuracy, objectivity and rigour in the assessment processes throughout the Safe and Sustainable review, and that impact assessments carried out by independent bodies were all ignored. The Minister said that it would be for the review body to decide the full extent of its review of all the decisions that have been made. That seems to suggest—we all agree with this—that the finding of the panel will be independent but the evidence it chooses to consider will be its own choice. I seek assurances from the Minister that she shares my view that all the facts that were part of the eventual decision—all the facts—should be investigated, and in particular, the specific facts raised in relation to Leeds and Leicester.

The hon. Member for Pudsey asked the Department of Health to ensure that the JCPCT released non-confidential information to the joint health and overview scrutiny committee. The Minister replied with the unsatisfactory,

“it is for the JCPCT to decide what information to release about the review and we are unable to comment further.”

Why did the Minister take this clearly unsatisfactory line? When she replies, I would like her to indicate whether she or her colleagues even asked the panel to release non-confidential evidence and, if they did not, why not.

Congenital Cardiac Services for Children

George Mudie Excerpts

Thursday 23rd June 2011 Commons Chamber

[Mr George Mudie (Leeds East) (Lab)]

I congratulate the hon. Member for Pudsey (Stuart Andrew) on the hard work he has put in to secure this debate. I compliment him on the sensitivity with which he phrased his contribution. I hope that that will allow the Government Whips to stay out of the decision and allow Members to get what we seek, which is not interference in clinical observations, but a review of how this is being carried out geographically.

The right hon. Member for Charnwood (Mr Dorrell) was more sanguine than I am about the involvement of Sir Bruce Keogh, the NHS medical director. I found his article in The Times this morning ill-timed, coming on the morning of a debate, when feelings are running high. I do not find it acceptable for him to say that anyone who opposes his view is “disingenuous” and that

“political interests conspire to perpetuate mediocrity and inhibit the pursuit of excellence.”

I find that offensive. Nobody in the Chamber argues with the clinical objectives. I find it unacceptable that some youngsters who are taken to centres for medical treatment get excellent treatment and that others get less than excellent treatment. I find it sensible and laudable that we should rationalise those centres to build up experience and techniques, and so that there are more people to share their experiences.

The right hon. Member for Charnwood said that we should not oppose the proposal because it is right clinically. He told us not to think of our own hospitals, but to think nationally. “Nationally”, however, also means “regionally”. The point that has not been made is that, while the Chamber should accept the clinical arguments, equality of access is also important. That is what is being said by most of the opponents of the proposals, and they are not being disingenuous. For instance, in the Newcastle versus Leeds argument, it would not be acceptable for me to argue in favour of the Leeds case on the basis that Leeds children should not have to travel 100 miles to Newcastle, because if we won our case, Newcastle children would have to travel 100 miles to Leeds. If it is wrong for us, it is wrong for them.

If the rationalisation, which we accept, takes place properly—and this is where the Minister comes in—there will be an underlay of fairness and equality of access. We have a National Theatre in London, but it is not a National Theatre for Yorkshire. It is nice for Hampstead, but it is not very good for Seacroft in Leeds.

[Mr Dorrell]

I think that the hon. Gentleman slightly misrepresented what I said. I did not say, “You must accept it”, or “Take it or leave it”. I said that those who wished to argue for a different approach must argue for the whole approach, and not for a sectional interest.

[Mr Mudie]

I entirely accept that, and I did not intend to suggest that the right hon. Gentleman had said anything different. My point is that, while the clinical case for a rationalisation is unarguable, equality of access is as important a consideration as any. Excellent treatment must not be available to only a certain number of people.

[Greg Mulholland]

We all accept the clinical premise of the review, but is it not incredibly arrogant for anyone to suggest that it cannot be fallible? There are obvious flaws in it. Many clinicians themselves say that it is flawed.

[Mr Mudie]

I hear what the hon. Gentleman says. I think that the same case was made by the right hon. Member for Charnwood. We may prevaricate for one reason or another, but sometimes it may be necessary to make a decision even when we think that it is not perfect, and I think that this is an instance of that. If the life of a child is involved, we must make a decision.

If we continue to challenge the clinical aspect of the review, we will fall into the trap of allowing a bad situation to continue. The case for change has been proved, and, while we may differ on how that change should be made, what is important is for us to express the view—and I should like to see it challenged—that there should be equality of access. Each region should ensure that every part of it has equality of access where possible, although that will involve some difficulty if Yorkshire is lumped together with the north-east.

In the last year I have had to move from my constituency office, which was in the centre of the constituency. I was offered cheaper, perhaps even better, accommodation in the outer part, but I felt that it would be unfair on the other wards for me to move away from the centre. If option 4 is either Leeds or Newcastle, I think that that is unfair on both. I do not want to close Newcastle, and Newcastle does not want to close Leeds. Locating provision sensibly in each region is important, but the House should also recognise, as it rarely does, that the country has some corners in which there is no equality of access in any respect. Those in Newcastle, in the top corner, and those in Cornwall, in the bottom corner, do not have access to many facilities that are accessible to people in the midlands, in Yorkshire and, above all, in London.

I believe that the House should accept the motion, and that the review team should forget about the clinical arguments and produce a template that proves to every Member that the excellent services that we should be demanding for children’s care will be shared equally around the country. The team should give some real, positive, out-of-the-box thought to how to deal with areas that generally lose out.

--- Later in debate ---

[Greg Mulholland]

I have not yet had a chance to congratulate my hon. Friend on the way in which he has co-ordinated our campaign. It has been a pleasure to work with him so closely, and I look forward to continuing to work with him and other colleagues. He is right: one of those serious flaws is the failure to consider the impact on adult heart services, which would be a huge problem.

There is real concern out there, as has been demonstrated not only by the petition in Yorkshire and petitions in other parts of the country, but by the views expressed by many respected practising and retired clinicians. The concern about the closures is understandable, but there is also concern about the review itself. There is concern about the process, about the conclusions reached so far, about the lack of consistency in the recommendations, about the lack of logic in relation to the premise of the review, and, I am sorry to say, about a lack of impartiality.

That is why it is right for the House to have an opportunity to express that concern on behalf of all the areas concerned, and why it is fitting that the Minister of State, Department of Health, the right hon. Member for Chelmsford (Mr Burns), is present. I thank the Minister for the way in which he has engaged with us, and I urge Members in all parts of the House to support the motion, so that we can address the concern that has been expressed outside and inside the House by considering the possibility of other configurations.

I wish to echo three points that have been made about the wonderful Leeds unit. The first is about the co-location of services. The unit is a case of true co-location, which is what the British Congenital Cardiac Association has called “gold standard” care. Leeds is currently one of only two hospitals shown in the review to have such a type and level of service. Mr Joe Mellor, a consultant anaesthetist at Leeds, says:

“What is particularly upsetting about the proposals is that our patients from Yorkshire would leave the Leeds unit and have to travel to Newcastle or Leicester. Leeds has centralised all its children’s services onto one site. Neither Newcastle nor Leicester have come close to achieving this. Congenital cardiac surgery is a very complicated form of medical treatment. If in Leeds we encounter a problem where the child needs the help of an intestinal surgeon, or a neurosurgeon, or need renal therapy, or a host of other possible therapy, then we get it immediately in our own children’s hospital.”

Jonathan Darling, a consultant paediatrician at the Leeds General infirmary, states:

“To lose heart surgery from the Leeds Children’s hospital would be a huge blow, especially when we have just centralised services precisely to realise the benefits of having all paediatric services co-located on one site. The Review process does not seem to give sufficient weighting to this true co-location.”

I am afraid that it simply has not done so, which is worrying and quite extraordinary.

The second point that I wish to make is on the issue of population, which colleagues from the region have already raised. It simply makes no sense to close a wonderful unit that is already performing almost the number of operations that it must, when there are so many people in the area and the population is growing. I echo the comments of the hon. Member for Leeds East (Mr Mudie) when I say that of course we do not want to see the Newcastle unit close. We do not want to see any unit close, because this is about getting things right. However, I say to him and others that it would be absolutely perverse to close Leeds simply to enable Newcastle to perform a sufficient number of operations. If we stick to the number in the review, Newcastle can only perform that number of operations if Leeds closes. That is absurd.

[Mr Mudie]

The point I was making was that if we are to take the review’s point and place units strategically, the obvious place with a mass population is Leeds. However, I said that that would leave Newcastle out on a limb, and something has to be done about that. The case for Leeds is unchallengeable.

[Greg Mulholland]

Indeed, and we have to get the point across to colleagues in other areas that perhaps we have to challenge the premise of the review and some of its figures if we are to reach other recommendations.

The third matter that I wish to mention, as the hon. Gentleman did, is travel. In the meeting yesterday with the review team, I was frankly dismayed by how little consideration was being given to the reality of ordinary working families and the effect that having to travel would have on them. I shall give a couple of examples. Johanne Walters, the mother of Emma, states that to them the change

“would mean her…surgery will be undertaken miles away from home and nobody would be there to support me—no family no friends—and it is incredibly difficult being there 24/7 at your child’s bedside, even with this support”.

Joanne and David Binns, whose son Oliver has been treated, have said:

“Oliver is our only child, and I’m sure you can imagine how it turned our world upside down. But we knew that we had family and friends who could just pop in and make us some food at the end of a long day, bring us clean clothes, and just be there if we needed a chat. I can’t imagine how much extra pressure it would have been at this point to have to think about long distance travel and accommodation on top of everything else.”

Matthew and Karen are the parents of Liam Hey, a constituent of mine who has become something of a celebrity. He is a wonderful young man who is being treated at Leeds. Karen has said:

“My son would not be here if it wasn’t for the LGI. It would be too much of a trauma to transfer children to another place.”

Travel has simply not received adequate consideration. It comes out top of the criteria that people give when we ask them, but it is not anywhere near the top of the list of the review’s considerations. That is wrong.

We have to re-examine the situation. I am delighted that the House has had a chance to debate it today, and that Ministers have been so accommodating in enabling us to do so. I urge the House to support the motion. We should come back with some proposals that will really work for children and that we can all support.