Drugs (Ultra-rare Diseases)

Alec Shelbrooke Excerpts

Tuesday 20th January 2015 Westminster Hall

[Greg Mulholland]

Absolutely. That is very much the case with Morquio, too. Simon and Katy Brown have told me that the drug is having a huge impact now. I met Sam and saw him running around when he visited my surgery. When there is deterioration in such conditions, the clock can never be turned back, which is why we are urging the Minister to address the situation. I am delighted that we had meetings with him. All the organisations involved, the MPS Society, the Muscular Dystrophy Campaign, Action Duchenne and Joining Jack, are urging the Minister and NHS England to find a way to ensure that all these children, not only the 111 who are currently on the trials—some of whom are, of course, receiving placebos—but all 138 children with these conditions, are able to access the drugs now. We have asked for a decision on that by the end of January.

We are in this situation because a decision was supposed to have been taken by NHS England on 15 December 2014, but a letter was sent by the MPS Society and a young man with Morquio syndrome, Kamal—I am delighted that his family are visiting Parliament today—and on receipt of that letter NHS England, realising that its process was potentially discriminating against people with ultra-rare conditions, pulled the entire process, leaving all these families in limbo. NHS England has a responsibility to put another proper, robust process in place.

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

I am grateful to my hon. Friend for giving way. I will be meeting my constituent Angela Paton on Friday afternoon. She was part of the trial, which helped her immensely, but she is worried that the drug may now be withdrawn. Would my hon. Friend like me to report to him after that meeting on Friday?

[Greg Mulholland]

Absolutely. It is critical that we all work together on this issue. Indeed, I would like to hear from the MPs for all these families across the country so that we can have one voice to say to NHS England and the Minister, who has been very helpful, that we need a solution and that we need to hear some news by the end of January.

NHS England is now consulting on a new process, and it has said that it will take 90 days. That may seem a reasonable time to come up with a process, but considering that the old process was flawed, there needs to be something to fill the gap that enables all these children to access the drugs now. At the moment, the drugs in this case are being supplied through the good will of the drug companies: BioMarin in the case of Vimizim and PTC in the case of Translarna. Both companies are engaged in the process, both have a part to play and both are involved in dialogue with the Minister and NHS England.

I will briefly explain the two conditions so that people understand. Morquio is caused by the lack of an enzyme needed to break down certain chains of sugar molecules used in building bones, cartilage, tendons and other bodily tissues. Those unbroken molecules are stored in parts of cells called lysosomes, which become swollen, disrupt cell functions and cause progressive damage. Babies with the syndrome grow normally, but growth slows significantly after 18 months. Those severely affected stop growing at about age eight, and their final height may be three or four feet, which has many effects on their quality of life. There is no cure for Morquio, but the enzyme replacement therapy Vimizim, for which clinical trials are ongoing at the moment, has been shown to be effective. As we have said, any delay with the drug will cause damage that cannot then be reversed.

Oral Answers to Questions

Alec Shelbrooke Excerpts

Tuesday 25th November 2014 Commons Chamber

[Mr Hunt]

There are more doctors and more nurses operating at Medway hospital and I know that when the hon. Gentleman was sitting on this side of the House he was very pleased with the progress that was being made in turning it around from special measures, but, like UKIP’s policy on the NHS, everything changes.

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

May I welcome the recent launch of MyNHS? Does my right hon. Friend agree that transparency of NHS performance, whether it be that of hospitals, GPs or surgeons, will be a major driver in improving patient care, as international evidence suggests, and help us avoid a scandal such as Mid Staffs, which happened under that lot over there?

[Mr Hunt]

Two thirds of the information we are publishing on MyNHS was actually collected by the previous Labour Government, but they refused to publish half of it. That is the difference.

Dementia Care and Services

Alec Shelbrooke Excerpts

Tuesday 7th January 2014 Commons Chamber

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

Dementia services need to be addressed now. According to the Office for National Statistics, by 2030 the number of people entitled to draw a pension will be 15.6 million, of whom more than 3 million will be over 85. Society has done much to prolong lives through a focus on helping ageing bodies and faulty organs, but for too long help for the brain has not kept pace with that for the rest of the body.

With an ageing population, it is no surprise to hear the worrying prediction that 1 million people will be living with dementia by 2021, up from 800,000 today. There is obviously a massive financial worry resulting from the figures, especially when dementia is already predicted to cost the UK economy £23 billion a year, which is more than cancer, heart disease or stroke. It is therefore crucial to have plans in place that are proven to deal effectively and compassionately with dementia and that can be improved and expanded as necessary over the next 10 years.

Aside from the economic argument, the more pressing issue for me is that of compassion, care and support. When my grandmother was diagnosed with dementia 25 years ago, little support or information was available for carers. Being painfully aware that the last two years of her life were spent with little memory or recognition of family members, I now wish that she could have received an earlier diagnosis, so that we could have found professional help much earlier.

To put the problem that we face in context, I will give some statistics from the Alzheimer’s Society, which has been hugely supportive during my preparation for this debate and has worked to raise awareness of these issues in Parliament and throughout the country. One in three people over 65 will die with dementia. Two thirds of care home residents have some form of dementia. There are 600,000 family carers of people with dementia. It is estimated that a quarter of hospital beds are occupied by people with dementia. The most poignant statistic for me when I was preparing for this debate was that dementia is now the most feared health condition among people aged over 55.

[Steve Rotheram (Liverpool, Walton) (Lab)]

I congratulate the hon. Gentleman on securing this debate on such an important issue. As we know from previous debates, this issue is close to the hearts of many people in this Chamber who have first-hand experience of dementia. Given what he has said about people living longer, which is to be welcomed by everyone, does he agree that one of the most important things that we can do is to ensure that there is better co-ordination in the research into the prevention of dementia? The issue of treatment is secondary. Preventing people from getting dementia is surely the most important thing that we can do.

[Alec Shelbrooke]

I am grateful for the comments that the hon. Gentleman has made. He is right that we must not only treat the illness, but consider what preventive work can be done. I will speak later about the need for the national strategy to focus not only on the treatment of people with dementia, but on what other research can be done.

It is obvious that dementia is on the radar of an ageing society. However, given the emotional toll of dementia and its prevalence at the end of life, I was horrified to hear that only 48% of people who live with dementia receive a formal diagnosis, meaning that many people are denied the care and support that they and their loved ones need. Before the national dementia strategy for England was introduced in 2009, the rate was 33%. If further proof were needed that dementia care and services need to be improved as soon as possible, those awful diagnosis rates should be enough to show that something needs to change.

I am proud to be part of a coalition Government who have shone a long-overdue light on dementia, not least through the Prime Minister’s decision to host the G8 summit on dementia last month. However, there is still much to do before we can be confident that everyone who is living with dementia—individuals and families—is able to have a fulfilled life.

[Neil Parish (Tiverton and Honiton) (Con)]

It is good that my hon. Friend has secured this debate. It is not only the people who are suffering from dementia who are badly affected, but those who are looking after them. We must therefore not only get the diagnosis right for those who are suffering from dementia, but ensure that there is respite care for those who are looking after them. They need a break in order to fulfil their caring role properly.

[Alec Shelbrooke]

I am most grateful to my hon. Friend for those comments. I am sure that everybody has experiences of their own, but perhaps it will help the House if I speak about my grandmother, as I did earlier. I was aged about 12 or 13 at the time of her diagnosis, and my sister was two years younger. My dad was working as a teacher and supporting me, my mum and our family, but he was also dealing with his own mother. I remember the toll that that took on him. He had to work out what was the best thing to do for his mother. He toiled over the decisions that he had to make for a long time, such as selling the family home in which he had been born and brought up in order to raise money for the care home. My hon. Friend is right that there is a massive toll on the families involved, as well as on the people who have this terrible disease.

Despite the focus on dementia, there is a danger that the momentum that has been created by the Prime Minister’s challenge on dementia, the G8 summit and the work of the Science and Technology Committee and the all-party parliamentary group on dementia will be lost if the Government do not act in a number of areas.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this matter to the House for consideration. Every one of us will have knowledge of this matter personally and from our position as elected representatives. One of the homes in my area has 23 residents and 20 of them have dementia. The magnitude of the problem is tremendous. Does he agree that an exchange of medical information would be helpful? Northern Ireland has the highest diagnosis level in the United Kingdom. Perhaps it is time to exchange the knowledge in Northern Ireland, Scotland, Wales and England to come up with a strategy for the whole of the United Kingdom of Great Britain and Northern Ireland.

[Alec Shelbrooke]

I am most grateful to the hon. Gentleman. I am sure the Minister heard his comments and will perhaps reflect on them when he sums up the debate.

I was talking about a number of areas. First, to continue making improvements along the current trajectory, it is crucial that the national dementia strategy for England is updated from the 2009 version. That strategy identified 17 key objectives for the NHS and social services aimed at improving the commissioning of dementia services, the quality of care delivered in hospitals and care homes, developing a clear picture of research and evidence needs, and providing support for carers. Will the Minister please outline what meetings have taken place about the effectiveness of the NDSE, and say what plans he has for a formal evaluation of it?

Secondly, in spite of the obvious benefits of the national strategy, so far the Government have made no plans to renew it. I welcome the Prime Minister’s challenge on dementia, which is ambitious in its plans and places a welcome political spotlight on the issue. However, that challenge alone does not provide the breadth of detail needed to guide health and social care services to make improvements, and neither does it carry enough accountability measures, which a national strategy would do.

A new national dementia strategy, with guidance for commissioners of health and social care, GPs, hospital trusts, care homes, and others, must be published before the current strategy expires in April this year. It does not seem to be a new trend of coalition Government not to renew national strategies, because in 2011, new national strategies for cancer and chronic obstructive pulmonary disease were published, and one for hearing loss is due.

[Hazel Blears (Salford and Eccles) (Lab)]

I have been listening carefully to the hon. Gentleman who is making an eloquent and powerful case. His point about the strategy is fundamental. We have a system of different clinical commissioning groups, and a lot of fragmentation, and we need a holistic strategy that brings together the national effort. All credit to the Government for pursuing the issue, but I echo what the hon. Gentleman is saying about the need to renew the national strategy to maintain that momentum and energy, and ensure we get good services across the country. Will he join us all in continuing to press the Minister for renewal of the strategy?

[Alec Shelbrooke]

I am most grateful to the right hon. Lady, and I congratulate her on the work she does with the all-party group on dementia. She and all hon. Members will recognise that on this subject the whole House is fairly united in trying to get the Government to make those changes, regardless of whether we sit on the Government or Opposition Benches.

Our international partners, many of which attended the G8 summit in December, have ambitious long-term plans. In the US, for example, President Obama published a dementia strategy that runs until 2025, well beyond his own term as President. France has recently published its fourth dementia strategy. The economic case for having a clear directive for dementia is overwhelming. Dementia costs the UK £23 billion a year, which is more than cancer, stroke or heart disease, yet the annual research spend into dementia is about £51 million, rising to £66 million in 2015. That compares with £521 million spent on cancer.

The ambition announced at the recent G8 summit to double the spend on research in the UK by 2025 is an excellent step forward, but a new national dementia strategy that covers all aspects of dementia, including research into prevention and finding a cure, will ensure that the momentum gained from the good work undertaken by the coalition Government will be turned into improvements for people affected by dementia. To be clear, I am not suggesting that money be taken from the other crucial health causes I have mentioned; I wish merely to illustrate the numbers involved.

What plans does the Minister have to renew the current national strategy on dementia? That point was left unanswered in the Backbench Business Committee debate last year. As past statistics have shown, the introduction of a national strategy for dementia in England has caused a rise in the rate of diagnosis, although the level is still worryingly low at 48%. More needs to be done on prevention, particularly further investigation into whether the small change of introducing homocysteine level tests on the NHS could act as an early-warning sign in identifying the problem.

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

Bearing in mind what the hon. Gentleman has said about low diagnosis rates, does he agree that the national strategy should include promoting greater awareness for many of those close to dementia sufferers who do not identify with the condition? They think people are just losing their hearing or becoming visually impaired as they grow older, and the diagnosis is then made far too late because symptoms are not realised early enough.

[Alec Shelbrooke]

That is a very helpful intervention from my hon. Friend. I will move on to cover some of the care homes in my constituency that are tackling those issues as one, but as he says it is important that a national strategy has accountability written into it so that these issues can be tracked as we move forward.

More than half of people with dementia cannot access the treatment, services and support they need because they have not officially been diagnosed. Furthermore, carers of people living with dementia also suffer. They have the uncertainty of knowing that something is wrong with their loved one, but have no official diagnosis. Patients and carers are therefore denied expert support through health and social care services and often feel that they cannot approach organisations such as the Alzheimer’s Society without a proper diagnosis.

In my constituency, the two clinical commissioning groups that are spread across Elmet and Rothwell have wide-ranging and impressive plans to increase diagnosis rates, but their ambition can go even further. Currently, NHS Leeds North diagnoses 50.85% of people with dementia, while NHS Leeds West CCG is only slightly better with 54.35%. My constituency reflects the picture across the rest of the country, meaning that half the people living with dementia are denied the certainty of a diagnosis.

[Heather Wheeler (South Derbyshire) (Con)]

I congratulate my hon. Friend on securing this debate. Will he congratulate the staff of Lloyds bank in Swadlincote high street who have taken the Alzheimer’s Society as their charity of the year? The local Alzheimer’s carers group works there and raises hundreds of pounds every month for that very important cause.

[Alec Shelbrooke]

My hon. Friend eloquently describes the work going on in her constituency to raise funds for this very important issue. I wish to add my congratulations to my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) on her dedicated work and on securing the debate last month, as well as to the right hon. Member for Salford and Eccles (Hazel Blears) and my right hon. Friend the Member for Sutton and Cheam (Paul Burstow). I hope that the recent momentum achieved by the efforts of the all-party parliamentary group to shed light on this issue will result in achieving the aim—backed by NHS England—of 66% of people with dementia receiving a formal diagnosis by 2015. It can be done, as some CCGs already have a 70% diagnosis rate. Can the Minister shed any light on why individual CCG diagnosis rates are so varied and do not add up to the NHS England ambition of 66%? Are there any plans to investigate further the effectiveness of homocysteine tests on the NHS?

[Bob Stewart (Beckenham) (Con)]

Is this not a very human problem? Diagnosis rates will depend entirely on whether people go to see their doctor, who, using a simple test, identifies whether someone has dementia. It is a bit unfair to say one CCG has a better rate than another because the determinant of the rate of identification is whether people go to see their doctor or are taken to see them by family and carers.

[Alec Shelbrooke]

I seem to be one page behind the House in my speech this evening, because interventions keep pre-empting the next part of my speech. My hon. Friend is correct that we need wider support. I have become a dementia friend, as I know many other hon. Members have.

The aforementioned points all combine in reality to have an impact on post-diagnostic support, as well as the support for those who have not been diagnosed but need care. In my constituency, some inspiring examples make me feel optimistic that dementia can be dealt with effectively and compassionately. I have seen at first hand that such support, delivered well and early in a person’s dementia journey can lead to better outcomes.

[Jim Shannon]

There have been great advances in medication. If people get an early diagnosis, medication can give them an extra five to six years of quality life. Does the hon. Gentleman agree that it is important that medication is available across the whole United Kingdom to give people with dementia or Alzheimer’s a better quality of life?

[Alec Shelbrooke]

I thank the hon. Gentleman for that intervention. He makes important points that reflect what the hon. Member for Liverpool, Walton (Steve Rotheram) said earlier: it is not just about treating the disease when it is there, but about how much preventive work can be done in the first place.

As I said at the start of my speech, I wish only that some of the strategies, diagnoses and drugs that are now available were there for my grandmother 25 years ago. I was only about 11 to 13 years old in the two years before she finally went into a home, but I realise in hindsight how her quality of life was slipping away. I talked about the toll that that took on my father when he was trying to do what was best for his mother. He would be at work all day. His mother lived in south-east London while we lived 20 miles away in Kent and he would get a phone call at 3 am from her next-door neighbour saying, “Your mother”—she was in her late 70s—“is out walking the street in her nightgown.” Those are the pressures and there was nothing in place at that time. She was still living on her own and, as her grandchildren, we would still visit her. Today, I believe that she would have had a better quality of life.

I am encouraged by some of the things that are going on. I want to draw attention to a chap called Paul Mancey and his team at Orchard Care Homes. They are located in my constituency and are developing care partnerships between charities and care providers, which is very much what my hon. Friend the Member for Bradford East (Mr Ward) was talking about. This new approach means that residents are tested for hearing loss, diabetes and dementia symptoms on entry to the care home, ensuring that appropriate care packages are put in place.

Many other care homes are developing innovative ideas, too. I am pleased to say that care homes have developed immensely since we moved my grandmother into one in the early 1990s, and even more delighted that the leading company on the development of care villages is located in my constituency. Graeme Lee and his team at Springfield Healthcare have set the bar on building a quality and comfortable dementia-friendly care village at Seacroft Grange, which is located in the constituency of the hon. Member for Leeds East (Mr Mudie).

As is often the case, however, the truly inspirational support networks are not those provided by the professionals. My hon. Friend the Member for Beckenham (Bob Stewart) talked about early diagnosis, and there are community champions. One community champion in my constituency is Peter Smith, who established the Tea Cosy Memory Café in Rothwell, which provides a welcoming place for those with dementia and their carers, as well as making Rothwell the first dementia-friendly community in Leeds.

The Alzheimer’s Society has done great work to promote awareness of dementia. Hon. Members can play a greater role, too, in raising awareness. I alluded to the fact that, like many Members, I am proud to be a dementia friend and to support the work of the Alzheimer’s Society. I urge as many Members as possible to become a dementia friend and to help the Alzheimer’s Society.

[Hazel Blears]

I am delighted that the hon. Gentleman is a dementia friend. Will he join me in encouraging all Members to make their constituency offices dementia friendly? We have just embarked on this journey. We are looking at special signage and at constituency letters to ensure that they are written in a way that people can understand, and all my constituency staff have been trained to be dementia friendly. If every Member of Parliament’s constituency office was dementia friendly, that would be a significant step forward. Perhaps we could work together on that.

--- Later in debate ---

[Alec Shelbrooke]

I hugely welcome what the right hon. Lady has just said. Perhaps I could be cheeky and suggest that she e-mail every one of us in this House to outline what she has been doing in her constituency office, because sharing information and best practice is the best way we can help people on this journey. I look forward to working with her.

I urge as many people as possible to become dementia friendly and help the Alzheimer’s Society achieve its goal of creating a network of 1 million friends across the UK by 2015.

Those examples prove what many health professionals know: that peer support networks and dementia advisers are effective in providing information to people with dementia and their carers, and they are valued by service users. They should therefore be supported and I welcome the “Carers call to action” campaign by the Dementia Action Alliance to promote this particular facet of the issue—not to mention that they are a relatively cheap intervention that also raises awareness of dementia and tackles stigma.

What are the Government doing to improve post-diagnosis support and what plans does the Minister have to ensure that all people with dementia have access to a dementia adviser or to equivalent suitable named carers?

Oral Answers to Questions

Alec Shelbrooke Excerpts

Tuesday 26th November 2013 Commons Chamber

[Norman Lamb]

I completely share the hon. Lady’s concern about care companies that do not pay the minimum wage. All care companies should meet their obligations in law to pay the minimum wage. HMRC has done a lot of work, focusing on the care sector, and I have been absolutely clear that there is an obligation for those care companies to meet their requirements under the national minimum wage legislation. We cannot get good care on the back of exploiting low-paid workers.

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

2. What steps he is taking to ensure that compassionate care is at the heart of the NHS.

[The Secretary of State for Health (Mr Jeremy Hunt)]

Last week, we published a full response to the Mid-Staffs public inquiry and set out our ambition to transform the quality of compassionate care in the NHS. We have already put in place a robust new inspection regime and measures to make it easier for doctors and nurses to speak out when they are concerned about standards of care or safety.

[Alec Shelbrooke]

Compassionate care goes right through from surgeons to GPs. Will my right hon. Friend comment on evidence that epileptic women of child-bearing age are not being shown the compassion necessary during pregnancy from their GPs or neurologists and are not having the risks of taking their epilepsy medication outlined to them? To date, such medication has caused more than 20,000 birth defects.

[Mr Hunt]

I thank my hon. Friend for highlighting this important issue. The Medicines and Healthcare products Regulatory Agency regularly reviews the evidence relating to anti-epileptic drug use, particularly sodium valproate products, and we check what information is available to doctors so that it can be passed on to patients. I am concerned about the issue my hon. Friend raises, so I have asked NHS England’s national director of patient safety, Dr Mike Durkin, to look into it carefully and get back to me.

Heart Surgery (Leeds)

Alec Shelbrooke Excerpts

Monday 15th April 2013 Commons Chamber

[Mr Hunt]

This situation arose because of the much greater data transparency and because the Government have been encouraging people to come forward if they have concerns about things going wrong. As a result, we were presented with data on the basis of which the NHS director decided that the safe and sensible thing to do was to suspend surgery while we got to the bottom of these data, which could have demonstrated some very serious outcomes. We need to take good advice from clinicians about the balance of risk. Yes, there might be some risks with people having to travel further for the surgery, but surely the risks are much greater if potentially unsafe operations are allowed to continue. That was why, on that balance of risk, it was decided to suspend surgery at Leeds until we could get to the bottom of whether the data were right.

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

In the week after surgery at the heart unit was suspended, my wife and I met a constituent in Rothwell whose child was due to go in for surgery. She was completely and utterly exhausted and overwrought with worry and concern. Many people were concerned not just about the suspension, but about the distances that they would have had to travel if Leeds had not reopened. That possibility, which we had previously mentioned, became a reality. Sir Roger has now been suspended from the review, but he had already reported. In order that we can take one positive out of what has happened in the past couple of weeks, will the Secretary of State ensure that the distances people have to travel are now taken seriously in the review?

Oral Answers to Questions

Alec Shelbrooke Excerpts

Tuesday 12th June 2012 Commons Chamber

[Mr Lansley]

An increased number of hip and knee revisions is one of the consequences of an ageing population. I welcome Tim Briggs’ report, “Getting it right first time”. His recommendations are sensible. I am pleased to note that it has the support of the British Orthopaedic Association, as well as clinicians in London. It will help us build on the progress that is being made, to which I referred. The latest figures show that the proportion of hip fracture patients who receive all elements of the best practice tariff has risen from 24% in 2010 to 37% in 2011, and to 55% in 2012. That achievement has attracted international interest and is undoubtedly saving lives.

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

10. What improvements in public health outcomes he anticipates by the end of the decade.

[The Parliamentary Under-Secretary of State for Health (Anne Milton)]

This year, we published our public health outcomes framework, which will last from 2013 to 2016. It sets out two high-level outcomes: to increase healthy life expectancy and to reduce differences in life expectancy and healthy life expectancy between communities. This is the first time that a Government have published a public health outcomes framework, and the first time that there has been ring-fenced money for public health.

[Alec Shelbrooke]

On 31 July 2010, I smoked my last cigarette. Every day since then has been a struggle and I still consider myself to be a smoker. Will my hon. Friend outline for the House what support the hundreds of people in my constituency and the tens of thousands of people around the country who are in the same boat are getting to improve public health outcomes?

[Anne Milton]

I heartily congratulate my hon. Friend on his considerable success, which he has put on the record. We have a number of initiatives, not least the NHS’s quit helpline. There has been a rise in the number of people phoning it and in the number of people who are attempting to quit. He is an example not only to his constituents, but to many Members around the House.

Points of Order

Alec Shelbrooke Excerpts

Tuesday 12th June 2012 Commons Chamber

[Mr Speaker]

No, but, knowing the hon. Gentleman as I have for the last 15 years, since we entered the House together, I have just a hunch that this is a matter to which he will return, possibly with notable frequelarity. Regularity? Frequency? I am getting there. [Hon. Members: “A lot.”] A lot: indeed.

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

On a point of order, Mr Speaker. It would appear that this afternoon the right hon. Member for Doncaster North (Edward Miliband), the leader of the Labour party, accused the right hon. Member for Kirkcaldy and Cowdenbeath (Mr Brown) of perjuring himself yesterday. Is it in order, Mr Speaker, for members of the Privy Council who sit in this House to make such accusations without explaining themselves to you or to the House?

[Mr Speaker]

I am not aware of any such accusation having being made. Immediately after the hon. Gentleman had raised his point of order, he sat down with a very bright grin on his face, so I shall take his remarks as having been made in a spirit of levity on which no further comment is required.

Oral Answers to Questions

Alec Shelbrooke Excerpts

Tuesday 18th October 2011 Commons Chamber

[Paul Burstow]

My hon. Friend is right to raise the issue of ensuring sufficient awareness of the pathways that exist for people to gain access to those services. I understand that the east midlands specialised commissioning group has recently carried out a review of non-invasive ventilation services. I shall ask the group to write to him in more detail.

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

12. What steps he is taking to assist patients to access a greater range of NHS services.

[The Minister of State, Department of Health (Mr Simon Burns)]

The NHS constitution gives patients the right to make choices about their care. The Government are committed to empowering patients. Our goal is for patients to have more choice of treatment.

[Alec Shelbrooke]

What steps is my hon. Friend taking to ensure that my constituents requiring cardiac services will have access to the care that they need in Leeds?

[Mr Burns]

My hon. Friend raises an important and controversial issue, as he will have heard when listening to my right hon. Friend the Secretary of State earlier and the debates that he has attended in the House on this subject. We are determined that proper facilities will be made available, based not on money but on the high quality of care, particularly for children. An independent review is being carried out by the joint committee of primary care trusts, which is expected to announce its recommendations later this year.

Congenital Cardiac Services for Children

Alec Shelbrooke Excerpts

Thursday 23rd June 2011 Commons Chamber

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

I will try to be brief to allow as many of my colleagues as possible to speak.

I do not want to take up too much time in defending the case for Leeds because that has been done exceptionally well by many others. Like me, a good number of the Leeds MPs who now occupy this place were city councillors there, including my hon. Friends the Members for Leeds North West (Greg Mulholland) and for Pudsey (Stuart Andrew) and the hon. Member for Leeds East (Mr Mudie)—a distinguished leader of Leeds council who was very much involved in achieving our aim of having the children’s hospital all in one place. As Leeds councillors, we had personal experience of this matter when one of our colleagues died of heart disease in his early thirties. He was from the black and minority ethnic community, which makes up 23% of the population of Leeds. Sadly, that community has inherent heart problems. That has been overlooked, and it needs to be given weight in the review.

We have heard about many of the flaws in the review. The Minister rightly says that he does not have any influence over the review, which is independent, and as individual MPs we probably do not have much influence over it either. What we do have, however, is this place. Twenty-four hours ago, we were knocking nine bells out of each other. It was raucous and it was fun; we made some serious points and we were having a go. Today, from across the Chamber, some very serious speeches have been made. No matter which side of the House we are on, politics does not come into it. This House is speaking with one voice, and that voice should be heard by the people carrying out the review.

When Members of a House such as ours, which can be so confrontational, all come together, that shows the real power of our parliamentary democracy. Although the Minister, and we as individuals, may not have any direct influence on this process, it would be extremely foolish for the people involved not to take note that we will almost certainly not divide on the motion and that we all support it, including the Minister himself and the Government. My constituents are always asking whether we can work together, and we can. Everyone has come together to say that the House of Commons says that the review needs to be looked at again and other options need to be developed. That is a powerful message that I want to go forth to the people who are carrying out the review.

Children's Heart Surgery (Leeds)

Alec Shelbrooke Excerpts

Thursday 3rd March 2011 Commons Chamber

[Stuart Andrew]

I entirely agree. I was about to deal with that point. I believe that there is a very strong case for Leeds. It has the capacity to expand, and is within a two-hour drive for nearly 14 million people. It has one of the highest population coverages among all the units in England, with 5.5 million people in the Yorkshire and Humber region. Leeds is, of course, centrally located in the north of England, and can accommodate patients from outside the current catchment area.

[Alec Shelbrooke (Elmet and Rothwell) (Con)]

I congratulate my hon. Friend on securing a debate on an issue that is vital to the people of our city. Leeds is not only central, but has been described as the motorway city. It has excellent rail links as well, which makes speedy access to the hospital possible.

[Stuart Andrew]

I am beginning to think that some Members have already seen my speech. I am getting ahead of myself. We have the M1, the A1, the M62 and excellent rail links, which make Leeds very accessible. The Leeds Hospitals NHS Trust has centralised children’s services, which I think meets the requirements of the Department of Health’s critical interdependency report. On 18 February the British Congenital Cardiac Association, which is a leading support organisation of the safe and sustainable review, released a statement saying:

“For these services at each centre to remain sustainable in the long term, co-location of key clinical services on one site is essential.”

Leeds General Infirmary is at the forefront of work on inherited cardiac conditions, and has an excellent record of providing safe, high-quality children’s heart surgery. The Yorkshire region has significantly higher birth rates than other parts of the country, particularly the north-east, and there is no doubt that demand will increase.

The review is informed by the overall opinion that a reduction in the number of centres is the best way in which to secure a safe and sustainable future service. It is guided by four principles, and I believe Leeds more than meets their requirements. The first is quality. The paediatric cardiac service at Leeds General Infirmary extends from pre-natal diagnosis to the treatment of congenital heart disease in adults, with excellent clinical outcomes. It has high standards and a personal service, and, as I have said, is located very centrally.

During the assessment process, Sir Ian Kennedy and his assessment panel visited every children’s heart surgery unit in England. They produced individual assessment reports on each of the units two weeks before the presentation meeting at the joint committee of primary care trusts on 16 February. At the meeting, the four reconfiguration options were presented. They were based on a number of factors contained in the panel’s assessment reports. However, I understand that there are significant factual inaccuracies in Sir Ian Kennedy’s report on the Leeds unit, and that its representatives were given no opportunity during the process to comment or request amendments of the factual inaccuracies before decisions were made about the configuration of the options for consultation.

At a meeting of the all-party parliamentary group on heart disease on 9 February, when asked when units would be able to challenge and amend inaccuracies in their reports, Jeremy Glyde, the programme director of the safe and sustainable review, said that that could be done during the consultation process.

The reports that the reconfigurations were based on contain fundamental inaccuracies, but they can be challenged only during the consultation period to decide which option is preferred. For Leeds, these inaccuracies include the following. Sir Ian Kennedy’s report documented that Leeds has no transition nurse and separate paediatric intensive care unit; neither point is factually accurate, to the extent that his assessment panel actually met, and talked to, one of the unit’s three transition nurses. The joint committee of primary care trusts advised at its meeting on 16 February that Leeds had stated that it could not do more than 600 operations. Again, that is factually incorrect— Leeds was never asked—but it was stated as the reason why two of the 14 options that were considered were discounted. The commissioners have acknowledged that this was an assumption and not based on what Leeds had said. In the pre-consultation business case for Leeds, start-up costs were reported as £2 million. That figure was not provided by Leeds, and is not representative of the accurate costs provided to the safe and sustainable review panel.

--- Later in debate ---

[Stuart Andrew]

I absolutely agree. For hearts, time is of the essence. We need to be sure that people can get where they need to be quickly. I met my hon. Friend’s constituent the other day, and she spoke very powerfully and emotionally about what that meant in her case. I cannot imagine how families in these situations must feel. It is imperative that there is a facility close by.

Returning to the reviews, there are also inconsistencies in the application of some of the principles. So, for example, Liverpool and Birmingham are in all the options because of density of population and access for patients, but the same does not seem to apply to the Leeds case. That is odd and I do not know why the Liverpool and Birmingham cases are different.

Not enough emphasis has been given to co-location. The facility at Leeds general infirmary is wonderful now—I am given to understand that it is the second largest children’s service in the whole country—so taking away its heart unit and the expertise that has been gathered there over the years is strange. This is not just about children’s heart services, because the process has failed to seek views from adult congenital patients. The doctors who operate on the children also operate on the adults and it appears obvious that wherever the children’s heart services go, so, too, will the services for adults. Will they have had an opportunity to be consulted on what was going to happen to those services? This is about a much wider point than just children’s services.

[Alec Shelbrooke]

My hon. Friend may be coming to this issue, but could he comment on the fact, which has been put forward every now and again, that Newcastle is favoured because its facility performs adult heart transplants? We recognise that surgeons have equal skills and just because somewhere does the adult heart transplants, it does not necessarily mean that we should move the children’s heart surgery to that department.

[Stuart Andrew]

That is a very valid point and I shall shortly discuss something that was said the other day because it will comment on that.

I shall conclude now because I know that a couple of other Members have expressed an interest in speaking in this debate. I understand that this process is going to be difficult and that there is a need for a review. Severe problems have been experienced in parts of the country and it is right that a clinically led decision is made, but I want that decision to be made on the basis of facts that matter to local people and that are accurate. As I have mentioned, there are real problems with the assessment and the options that have been mentioned. Emotions will of course run high, because this is a very emotive subject. It is incredibly moving to listen to the families I have been speaking to since this matter first arose. They describe how their children and their babies were so close to death but how, thanks to the expertise that was provided at this location, which they were able to reach, their children are at least here and receiving the wonderful care that is provided, although they may be poorly.

There is a case to be made for the facility at Leeds in terms of geography, population and access. We like to tick boxes in this country and everything is ticked in this case for Leeds. I would be grateful if the process could be examined. Some powerful comments were made and cases were mentioned at a meeting held with parents and clinicians here on Tuesday. They are desperate for this unit to remain open. As someone said at that meeting, the doctors should move where the patients are; it should not be the other way round.