Jim Shannon debates involving the Department of Health and Social Care during the 2015-2017 Parliament

Brain Tumours

Jim Shannon Excerpts
Monday 18th April 2016

(8 years, 8 months ago)

Westminster Hall
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This information is provided by Parallel Parliament and does not comprise part of the offical record

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
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I congratulate the hon. Member for Warrington North (Helen Jones) on her detailed and concise presentation. I am here because my constituents have contacted me. I suspect that is why we are all here: we have poignant personal stories to share.

Brain tumours kill more children and young adults than any other form of cancer. Every day, 10 children and young people in the United Kingdom learn that they have cancer. More than 16,000 people are newly diagnosed with this form of cancer each year in the United Kingdom, yet just 1% of the national spending on cancer research is allocated to this horrendous disease. I am glad to see the Minister in his place; I always look forward to his responses. I am sure that he will respond in a positive fashion and give us the hope for which everyone in this Chamber wishes, along with our constituents.

The allocation of funding is even more alarming when we consider the survival rates for brain tumour patients. Breast and prostate cancer patients, to give two examples, have an 80% five-year survival rate, compared with that of brain tumour patients, which is less than 20%. Clearly, more needs to be done on investment in brain tumour research. Can the Minister indicate what partnerships he is encouraging between universities, Departments and big business to ensure that we can move forward?

Gavin Robinson Portrait Gavin Robinson (Belfast East) (DUP)
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Our colleague the hon. Member for North Down (Lady Hermon) could not be with us today, but she lost her sister, who was completely asymptomatic, at the age of 37. That reinforces the point that discovery often occurs too late, which is why research and awareness are crucial.

Jim Shannon Portrait Jim Shannon
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As always, I thank my hon. Friend for his intervention.

Secondary or metastatic brain tumours are particularly important to consider. Up to 40% of cancers in other parts of the body will eventually spread to the brain. Let us focus on the key issues, such as the blood-brain barrier.

The National Cancer Intelligence Network found that 61% of brain tumour patients were diagnosed in accident and emergency, including 53% of children up to 14 years old, 25% of those aged 15 to 24 and 20% of older adults. Although there are many charities, I will put in a quick plug for CLIC Sargent and its work. Its paper, “The Best Chance from the Start”, found that the rarity of cancer in children and younger people, added to the fact that symptoms can be non-specific, can make it challenging for GPs to recognise the symptoms.

Many constituents have written to me, but I will conclude by quoting two. One is my constituent Mary Patterson, a survivor. She was diagnosed, she had surgery and she is alive today, although her life is restricted. Another story involves a lady in my constituency called Heather, who writes about her late husband George:

“My own interest in this petition and upcoming debate came about because my husband, George Ramsey, died 1 July 2011 from a brain tumour, only nine weeks after diagnosis. He was just 50 years old, and had just retired from the fire service after 32 years of service. Unfortunately my husband received poor management from the neurosurgery department, and his treatment was delayed after the team ran out of time to discuss his case on two separate occasions.”

An ombudsman investigated and reported to the Assembly. I conclude with this comment of hers:

“In his last five years in the fire service, he was the community liaison and youth engagement officer for the Belfast area. The chairman of the Belfast City Council stated that George’s work had ‘made Belfast a safer place’.”

That is a touching and personal testimony. The sad thing is that it is happening to families up and down the country at this moment. Although we have the opportunity to get back on track, it is sad that it took a petition to bring us here.

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George Freeman Portrait George Freeman
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The hon. Lady, with whom I work closely on a number of issues, makes an excellent point. There are a number of criteria that drive how funding is allocated, and that is one of the things we ought to look at. If I can get to the end of my speech, I will make some recommendations about how we might pick that up and look at it.

I want to announce today that the Government accept that we need to do more in this space, committing to a number of specific actions that reflect the concerns that have been raised, both here and in the Petitions Committee and the all-party group report. I suggest that I should convene in the Department of Health a task and finish group to examine a number of the issues that have been raised here today, and to ask a question. I do not believe that as a Government we are not doing enough. We have put £0.7 billion a year into the Medical Research Council, to do the deep science on the medical frontier. We have put £1 billion a year—ring-fenced—into the National Institute for Health Research’s clinical infrastructure. We are funding the genomics programme and putting £4 billion into digital health and the informatics that go around it. The question we should ask is: surely there is more we can do to help to make that resource and that infrastructure support this particular disease area? I will say a little more about why I think that case has been made and what we might do about it.

I will not repeat all the numbers—hon. Members have heard them—but about 4,000 brain cancer cases are diagnosed each year in this country, resulting in about 3,500 deaths a year. We all know that brain tumours are very complicated—there are about 130 different types of them—and the truth is that we do not know what causes most of these cancers. Old age is a risk factor, but as many hon. Members have said with great passion today, it is those children who are diagnosed who drive us. Four-hundred children a year are diagnosed, and we just do not understand or know exactly what is driving it. There are various hypotheses around genetic conditions and some exposures.

Unlike for most other cancers, brain cancer mortality rates have increased. According to figures from the Office for National Statistics, in the last 30 years the mortality rate for brain cancer has increased by 15% for men and almost 10% for women. Improvements in diagnostics and treatments have helped to improve short-term survival in adults, with around 49% of people diagnosed with brain cancer now surviving for at least a year, compared with around 25% 30 years ago. Long-term survival has also improved, with around 20% of people now surviving for five years or more, compared with around 10% 30 years ago. We have also recently seen an increase of more than 25% in GP referrals for magnetic resonance imaging for potential brain tumours, from about 30,000 to 50,000. Veterans of these issues will know that those are relatively small numbers over quite a long period, compared with the explosive pace of progress in a number of the other disease areas that we often discuss.

A number of Members have talked about early diagnosis, which is clearly absolutely key with this cancer, as with all cancers. Last year, a report by the independent cancer taskforce set out 96 recommendations, broadly covering six strategic priorities, including early diagnosis, and NHS England is working with partners to establish a new cancer programme to implement those recommendations. By the end of this Parliament, everyone referred with a suspected cancer will receive a definitive diagnosis or the all-clear within four weeks.

Jim Shannon Portrait Jim Shannon
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rose—

George Freeman Portrait George Freeman
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I will give way to the hon. Gentleman, because he is a doughty pursuer of mine.

Jim Shannon Portrait Jim Shannon
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I thank the Minister for his response. Will he set out the funding or help that he can give to universities? He knows I am very keen on that issue. Universities have put forward some very good medical initiatives and some new medications and medicines as well, and Queen’s University Belfast is one of those universities. Can we do more with universities, business and Government? If we can, we can find the cure, which would be a big step forward.

George Freeman Portrait George Freeman
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I think we can do more and I welcome this opportunity to praise the role of Queen’s University Belfast in this field; it is a centre of real excellence in cancer science.

The standard treatment by the end of this Parliament will be underpinned by a commitment of an extra £300 million from Government in diagnostics. Last June, the National Institute for Health and Care Excellence published updated guidance on cancer referrals, which will make it easier for GPs to think about the possibility of cancer much sooner and to refer people for tests more quickly. This guidance includes new recommendations about brain cancer in adults, children and young people.

We are investing substantially in research. That is not to say we are doing enough—I will come to that in a moment—but we are investing £1.7 billion every year in health research. I am delighted that in the last autumn statement my right hon. Friend the Chancellor ring-fenced our investment, despite some difficult public spending pressures. We spend £0.7 billion a year on the MRC and £1 billion a year on the NIHR’s clinical infrastructure across the NHS. Cancer research spend by the NIHR rose by over a third during the last Parliament to around £135 million a year. Most of that investment—around £115 million—is on infrastructure. The model is that industry and charity can then run research projects through that infrastructure—I will come back to that point in a moment. That investment supports translating scientific breakthroughs into benefits for patients.

Spend specifically on brain tumour research cannot currently be separated out from total spend data for the cancer research infrastructure. I can, reassuringly, share with colleagues the information that six of our 11 NIHR biomedical research centres are conducting brain tumour research, and that the NIHR clinical research network had 30 brain tumour research studies that were recruiting patients in 2015-16. The NIHR is also funding research programmes and fellowships. For example, the health technology assessment programme is funding a £1.4 million trial involving patients who have received surgery for atypical meningioma.

The other main Government fund for health is the MRC. Over the five years to 2014-15, the MRC spent £10.9 million on research into brain and pituitary tumours, which spans basic discovery science, translational projects and early clinical trials. Both the NIHR and MRC also fund the Clinical Practice Research Datalink—the CPRD —which shares data for research. Four brain tumour studies have been published using CPRD data.

I want to mention the important role of charities. Those that follow my work will know that I have recently opened the door and made what has been described as a bold, generous and comprehensive offer to the Association of Medical Research Charities to come to the top table in the new landscape of life science research co-ordination that I am putting place. Medical research charities in this country raise £1.4 billion every year for research, from the smallest charities on the high street to CRUK, which has now become a major strategic funder and shaper of cancer policy.

I welcome the work that the 18 major charitable and public funders of cancer research are doing in the UK through the National Cancer Research Institute. Through that work and the work that the NIHR is doing with research councils, increased brain tumour research investment by charities drives increased support by the NIHR. Here is the challenge: our system works on the basis of bids and of accelerated funding. Once funding starts to drive clinical and academic results, that generates more funding, which drives more research. The danger in that model is that, unless that initial critical mass can be achieved, things can get squeezed out.

We have invited a number of applications for experimental cancer medicine centre status over this funding period, which are funded by the NIHR and Cancer Research UK. I am delighted to be able to announce that, on behalf of the arm’s-length bodies, NHS England will next month publish an implementation plan for the cancer taskforce strategy, “Achieving world-class cancer outcomes”. As part of one of the specific recommendations in that strategy, Public Health England is investigating how we can use new and existing data sources to identify secondary cancers and cancer progression more generally, including for brain tumours.

I hope I have demonstrated that some progress is being made, but as I have said, I do not think that progress being made is a reason not to do more; I think hon. Members have made a powerful case that we should. We formally accept that more needs to be done. The case has been made that we need to look carefully at what we can do. As the report recommends, I will be asking the NIHR to look at publishing a national register that considers how we spend public funds across research of different disease areas and different organs by therapeutic area, not least because it is a powerful way of helping to draw in co-investment from industry and charities. I shall be raising those issues with the MRC and, having recently convened the NIHR Parliament day, suggesting that at next year’s NIHR Parliament day we come back with that register and that breakdown of information.

We should look at issues around earlier diagnosis. I am prepared to announce today that we should specifically include brain cancer in the Genomics England programme, which is dealing with rare diseases and cancers, to make sure that it is properly picked up, and to talk to NICE about the point made about its guidance procedures. To pull all this together, I want to suggest that I should convene a task and finish working group in the Department of Health to touch on other issues that have been raised, including data collection, trials, off-label drugs, research barriers and skills.

I am conscious that I need to leave the sponsor of the debate a few seconds to close, but I hope that colleagues will see in my response that I have tried both to give patients some hope that we are listening and to strike a blow for good democracy, as well as good medical research.

Dementia and Alzheimer’s Disease

Jim Shannon Excerpts
Tuesday 12th April 2016

(8 years, 9 months ago)

Westminster Hall
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This information is provided by Parallel Parliament and does not comprise part of the offical record

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
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I beg to move,

That this House has considered dementia and Alzheimer’s disease.

I thank all Members who have very energetically turned out in large numbers to support this debate. I am going to keep my speech to 15 minutes to give everybody else a chance to participate. I thank the shadow Minister for being here, and it is good to see the Minister in her place. We always get a good response from her, so I look forward to that.

Yesterday, we had a digital debate in preparation for this debate, and I have got some stats to give hon. Members an idea of how it went. It was organised by Lucinda Blaser and the staff of my office. We reached almost 3 million Twitter accounts, and a total of 1,100 tweets were sent throughout the day. There was an enormous amount of interest outside this House in yesterday’s debate, and the same is true of today’s debate.

I want to speak about the issues that concern me. It is hard to find someone whose life has not been touched in some way by Alzheimer’s or dementia. People up and down the country—unfortunately including many in my constituency—are affected by those indiscriminate diseases. Alzheimer’s and dementia know no class, colour, creed or gender; they can affect any of us. It is extremely important that we have this opportunity in Westminster to discuss advances in ways of tackling the disease. This debate raises awareness and puts the issue of dementia and Alzheimer’s on the agenda for the whole of the United Kingdom. All Members will bring their own knowledge of this subject to the House. We will hear contributions from Members from across the whole of the United Kingdom of Great Britain and Northern Ireland.

According to the Alzheimer’s Society, our ageing population will increase the trends. In 2015, 720,000 of the 856,000 people known to have dementia were in England, 45,000 were in Wales, 70,000 were in Scotland and 21,000 were in my home nation of Northern Ireland. In my trust area, which includes Lisburn, North Down, Down and Ards, the level of dementia is 25% higher than that of England after age standardisations. We have a higher level of dementia and Alzheimer’s in my constituency than anywhere else in Northern Ireland.

Julian Knight Portrait Julian Knight (Solihull) (Con)
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I congratulate the hon. Gentleman on securing this absolutely vital debate. This is not just about the total number of cases of dementia that are now being registered; it is about the increase down the line. In my constituency, we are looking at an estimated increase of 30% over the next five years in reported dementia cases. Will the hon. Gentleman reflect on the increasing incidence of dementia?

Jim Shannon Portrait Jim Shannon
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The hon. Gentleman is absolutely on the button on this issue. Very quickly on the figures, because stats can sometimes overawe us, it is estimated that by 2025 1.1 million people will have dementia and Alzheimer’s, and by 2051 2.1 million people will have the diseases. The numbers are enormous.

Nick Thomas-Symonds Portrait Nick Thomas-Symonds (Torfaen) (Lab)
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I congratulate the hon. Gentleman on securing this debate on such an important topic. On the increase in numbers, does he agree that some vital work is being done on mitigating the symptoms of Alzheimer’s, not least in many care homes and residential homes in my constituency? Equally, we have to focus on palliative care for people with Alzheimer’s at the end of their life.

Jim Shannon Portrait Jim Shannon
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I was going to come to that issue. I thank the hon. Gentleman for that intervention. It is not just about the diagnosis of dementia and Alzheimer’s, but about the follow-up, the path of care and how we help the whole way through. I will touch on some of those things later in my speech.

We must not abandon or diminish our efforts to find a cure. We have to take into account the reality we face and carefully plan for the future, so that all those with dementia and Alzheimer’s can get the care and support they so desperately need. As the hon. Gentleman said, that is the issue we have to address.

Maggie Throup Portrait Maggie Throup (Erewash) (Con)
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We are talking about end-of-life support, but we have to take a practical approach. One of the charities in my constituency—Community Concern Erewash—has a project to dementia-proof houses in Erewash to help people in the early stages of dementia stay in their houses for longer. They are doing things such as labelling drawers and rooms, so that people know exactly know where they are and can navigate their house for longer. Does the hon. Gentleman agree that such practical measures will make a difference?

Jim Shannon Portrait Jim Shannon
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The hon. Lady is absolutely right. The simplest things can make a difference. It is about improving quality of life and letting people with dementia and Alzheimer’s have a life with their families.

Mark Prisk Portrait Mr Mark Prisk (Hertford and Stortford) (Con)
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I congratulate the hon. Gentleman on securing this debate. He makes a very important point, which is that we are concerned not only about those with the condition, but about their carers, of whom there are now 750,000. Does the hon. Gentleman agree—I have been talking to my local Alzheimer’s Society about this—that we have to ensure that we have information and provide access to support and networks so that carers do not feel isolated, as they often do?

Jim Shannon Portrait Jim Shannon
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I thank the hon. Gentleman for that contribution. In the digital debate yesterday, there was mention of the clusters for those caring for people with dementia. There are 82 across the UK mainland, including some in our area and in Scotland and Wales. Lots of things are happening, and we need to see them develop.

To be fair—I know the Minister will say this in her response—the Prime Minister made very good comments about the 2020 challenge on dementia, which contains some marvellous things that can pave the way forward. The simple things can really make a difference and change people’s lives easily.

Rehman Chishti Portrait Rehman Chishti (Gillingham and Rainham) (Con)
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I applaud the hon. Gentleman for securing this very important debate. He is talking about getting the simple things right. In the Medway towns, we have dementia cafés—one is located in Medway—where families and sufferers can be brought together to share their experiences and get the support they need in their local area, which is absolutely vital at that time.

Jim Shannon Portrait Jim Shannon
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I thank the hon. Gentleman for that point.

Catherine McKinnell Portrait Catherine McKinnell (Newcastle upon Tyne North) (Lab)
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This is such an important debate, and it is really important that we air all of these issues. It is about the simple things in many cases, but it spreads across a wide network. One of the respite centre residents of Dementia Care—an excellent charity in my constituency—was recently admitted to hospital for a routine procedure but was not released from hospital until 3 am, which threw their entire programme for the next day. More carers were needed to get them back into a routine. Simple things make a huge difference to such people and those who care for them.

Jim Shannon Portrait Jim Shannon
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The hon. Lady speaks with knowledge. I thank her for that contribution.

There are ten key indicators of the quality of life of people with dementia: communication difficulties; relationships; environment and surroundings; physical health; a sense of humour; independence; a sense of personal identity; the ability to engage in activities and the opportunity to do so; difficulties with eating, drinking and swallowing; and, of course, their experience of stigma. All of those things are important.

Lord Spellar Portrait Mr John Spellar (Warley) (Lab)
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I congratulate the hon. Gentleman on securing this debate. As he draws these strands together, there is one problem that we should focus on. Local authorities have many statutory responsibilities, but as a result of the significant cuts to their budgets, these areas—they are not statutory responsibilities but, as a number of colleagues identified, they play a huge role in enabling people to manage their condition, stay active for longer and provide respite for their carers—are being cut back, which will ultimately have a long-term cost for the health service.

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Jim Shannon Portrait Jim Shannon
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Obviously, the right hon. Gentleman has a focus on the issue. We will throw that ball in the Minister’s direction and perhaps she will answer that as well.

Dignity and quality of life are far too easily taken for granted, but simple things are so often lost when someone is diagnosed with Alzheimer’s or dementia. To do what we can to facilitate a better quality of life for those who through no fault of their own are so diagnosed is what I hope we came to this House to do—to make a difference. Yesterday, it was deeply encouraging to see from the digital debate how many bodies are active in the field of dementia and Alzheimer’s.

There are many issues to consider as part of dementia awareness, although one that is often overlooked is sight. I met an optician from Newtownards last week, and what I learned prompted me to mention the subject now. All too often, it is assumed that someone with dementia will gain no benefit from a sight test and vision correction, simply because they have a cognitive impairment or might not work, drive or read. Good eye health and good vision, however, can play an important role in supporting the wellbeing of a person living with dementia. Again, I ask the Minister for a better strategy. I know that opticians’ organisations would be happy to assist. Good vision can greatly increase a person with dementia’s sense of independence, allowing them to continue to participate in daily tasks and activities and in obtaining a good quality of life.

Bob Stewart Portrait Bob Stewart (Beckenham) (Con)
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Does the hon. Gentleman intend to cover why there is an increase in dementia? Many of us are dementia friends, but why is there an increase in this awful illness? Do we know?

Jim Shannon Portrait Jim Shannon
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I would need to the wisdom of Solomon to answer that question. Personally, I do not know; perhaps it is society or how we live. People are living longer and, by the very nature of living longer, we have such problems. There are probably a number of issues involved and reasons for that. However, early diagnosis, follow-on care and end-of-life care are fundamental.

There is a need to raise awareness among people with dementia and their carers about the disruptions to vision and eye health that might be concurrent with or arise from dementia. We therefore need to emphasise the importance of regular sight tests and eye examinations.

The Mental Health Charter for Sport and Recreation has done some interesting and outside-the-box things for people living with dementia. Along with partners, they have delivered a dementia-friendly swimming initiative, which is steadily expanding across the country. That is an absolutely fantastic way to help improve quality of life. It is amazing how not-for-profits are putting in the hard graft to make heart-warming things such as that happen, often with no funding. It is amazing what a group of dedicated, selfless individuals can do, as has been mentioned.

Mark Williams Portrait Mr Mark Williams (Ceredigion) (LD)
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I thank the hon. Gentleman for giving way and I apologise for missing his opening remarks. Will he take the opportunity to commend the many local communities that have sought dementia-friendly status, meaning that a visit to the shop is not too embarrassing or a stigmatising event for sufferers or their carers?

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Jim Shannon Portrait Jim Shannon
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The hon. Gentleman has clearly hit on a very salient point.

In relation to the science and medical sectors, I ask the Minister about the significant spend on and moneys set aside for the investigation into how dementia happens, which the hon. Member for Beckenham (Bob Stewart) asked about in his intervention. That money will help to find a cure—and we need to find a cure, because we have to give hope. To give hope, we have to have medical interventions and the investigations leading to them.

Maggie Throup Portrait Maggie Throup
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The hon. Gentleman is talking about a cure. Recently, I visited the department of human genetics at the University of Nottingham, which is working hard on a genomics project to identify the change in the genes that might cause dementia and Alzheimer’s, so there is light at the end of the tunnel, although it is a long way off. Great work is being carried out, however, not only in Nottingham, but in many places in the UK and throughout the world.

Jim Shannon Portrait Jim Shannon
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We have to encourage all medical advances.

The number of people living with the condition in the UK is revealed as more startling when we take into account the unsung heroes—the carers.

Baroness Ritchie of Downpatrick Portrait Ms Margaret Ritchie (South Down) (SDLP)
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I congratulate the hon. Gentleman on obtaining this debate. He made an important point about the unsung heroes, the carers. Does he agree that often the people who provide the care in the home rely on outside visits, but those are short-term visits, which are not really the answer to support the carer or the person suffering from Alzheimer’s disease or dementia? More work on policy development and resources needs to be invested in by Government in the vital area of caring.

Jim Shannon Portrait Jim Shannon
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I thank the hon. Lady for a valuable intervention.

Carers UK estimates that, of the 6.5 million carers in the UK, 670,000 people care for friends or relatives with dementia. It is estimated that the NHS saves some £11.6 billion each year because of those unsung heroes; their contribution as volunteer carers is very valuable. Carers may end up providing more than 100 hours of care per week, and all too often the outside world is completely oblivious to their efforts—even those who know the carers might be oblivious, because they do not know what is happening. Anyone who has lived with someone with dementia or Alzheimer’s, or knows a person who does, knows the problems. People with dementia can often unknowingly become agitated, even violent, and night-time wandering and shouting can have a serious impact on carers’ sleep patterns, let alone sufferers’.

Danny Kinahan Portrait Danny Kinahan (South Antrim) (UUP)
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I congratulate the hon. Gentleman on securing this debate. Talking about awareness and carers, does he agree with me that a large number of carers might not even be aware of, but need to be taught, how to help and look after? We need an awareness campaign.

Jim Shannon Portrait Jim Shannon
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We do need an awareness campaign—perhaps it starts with this debate today, working its way through to our constituencies and the people we represent.

Too often, carers are left to suffer in silence. The existing services on offer are not publicised enough and are not up to standard. The main social security benefit available to carers is the carer’s allowance. Those providing more than 35 hours of care a week are entitled to only £62.10. Further to that, carers may incur sanctions on how much they can earn on top of the allowance. Dementia carers save the NHS more than £11 billion every year, but they get only £62.10 per week for giving up their lives for someone less fortunate. I know the Minister’s Department is not responsible for that but, with respect, it is not a good reflection on Government given the hours spent by carers. Times are tough for the public finances, but it must be highly insulting to carers for them to see some of the things happening in the news when they are getting only £62.10 a week.

Gavin Robinson Portrait Gavin Robinson (Belfast East) (DUP)
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Familiarity has been mentioned, and that is an important role for carers to play. My own grandmother deteriorated every time she was in hospital, because of the lack of familiarity. Does my hon. Friend support John’s Campaign, which encourages the provision of more time and greater support for carers in the hospital setting, as well as greater flexibility about the hours they can be there with their loved ones?

Jim Shannon Portrait Jim Shannon
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My hon. Friend makes a salient point. He always hits on the issues that we should all be aware of.

I welcome the fact that the Government are developing a new carers strategy. I can only hope that this debate will raise awareness of the need for urgent and large-scale reform of the way in which the Government treat carers. I welcome the dementia-friendly communities strategy and the clusters of dementia groups. In my constituency we have a number of homes where patients with dementia and Alzheimer’s are looked after directly. I also have a dementia friends group who come together in the Church of Ireland church in Newtownards. They bring together all the people of Ards and North Down who want to participate. They give them art, they give them music and they give them a chance to interact, and it is marvellous what happens.

Briefly, I want to mention some of the things that happen in Northern Ireland. The Northern Ireland dementia strategy has a list of achievements to its credit in recent times, which I bring before the House to help the debate: £6.25 million in the Dementia Together Northern Ireland project; the appointment of dementia champions—perhaps the Minister will give us some thoughts about dementia champions in the whole of the United Kingdom, because things are happening, but I would like to hear about them.

Nick Thomas-Symonds Portrait Nick Thomas-Symonds
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On dementia champions and dementia friends, will the hon. Gentleman join me in praising the wonderful work that is done by them, especially in providing sufferers with familiarity—the point made by the hon. Member for Belfast East (Gavin Robinson)? One of the ideas is to provide sufferers with things such as memory boxes to trigger the memory, which helps terrifically with this dreadful disease.

Jim Shannon Portrait Jim Shannon
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I thank the hon. Gentleman for his intervention.

Mark Durkan Portrait Mark Durkan (Foyle) (SDLP)
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I commend the hon. Gentleman for securing the debate. On Northern Ireland, he may be aware that the Joseph Rowntree Foundation supports the Dementia without Walls programme, and one place in which it has done something is in a city with walls—the Derry Engaging and Empowering Dementia project has included: work at the level of schools and everywhere to ensure that everyone is more aware of dementia; and Derry having the first dementia-friendly pantomime in Ireland last December, in the Millennium Forum.

Jim Shannon Portrait Jim Shannon
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I thank the hon. Gentleman for his intervention and for giving an example of some of the good things happening throughout the whole country.

I tabled an early-day motion some time ago to highlight what can happen in people’s homes, and I suggested issues such as smoking, drinking, diet, excessive weight, healthy weight and social interaction, which is so important. Many may enjoy a tipple or an alcoholic beverage, but for too long alcohol has been overlooked as a cause of dementia. The hon. Member for Beckenham asked what some of the causes are, and that is one of them. No one is saying to people to go cold turkey or to hang up their dancing shoes, but the facts are there and they need to be heard.

We have alcohol-related dementia, which is formally attributed to alcoholism, and conclusive evidence now shows that heavy drinking over a long period increases the chance not only of dementia in the long term but of early onset dementia. To illustrate that, Alcohol Concern has provided comparative data showing that the brains of men who drank more than four units of alcohol a day—approximately two or three drinks a day—over 10 years age at a higher rate than those of light or non-alcohol drinkers. The brains of men who regularly drank alcohol appeared between 1.5 and 5.7 years older than their healthier counterparts. Those are just some of the things we have got to address.

One other thing we have done in Northern Ireland is provide funding for dementia-specific nurses, new studies into treating dementia—seven studies are taking place in Northern Ireland—and we have clinical leads for research. That is what we need to do. I thank the Minister, the shadow Minister and right hon. and hon. Members for coming to participate in the debate. I hope that my comments and the interventions have helped to focus attention and that we can do a lot more in advancing the race against dementia and Alzheimer’s, supporting the carers better and furthering awareness of the potential causes.

None Portrait Several hon. Members rose—
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--- Later in debate ---
Jim Shannon Portrait Jim Shannon
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In the very short time that I have, I thank the Minister, the shadow Minister and hon. and right hon. Members for their significant contributions. All political parties have participated, and all regions have taken part. We all want the same things: advances to find a cure to a global problem; more money to be spent on medical research; thanks to the carers, paid and unpaid; and diagnosis, follow-up care and end-of-life care. Make the simple changes. I thank everyone for their personal stories, too.

Motion lapsed (Standing Order No. 10(6)).

Contaminated Blood

Jim Shannon Excerpts
Tuesday 12th April 2016

(8 years, 9 months ago)

Commons Chamber
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Baroness Ritchie of Downpatrick Portrait Ms Ritchie
- Hansard - - - Excerpts

I am sorry, but I cannot take any interventions because time is limited.

The health problems that thousands face as a result of this tragedy have been exacerbated by the distress and uncertainty around the support arrangements. Irrespective of how bad things have been, I would urge the Minister, having listened to the reasoned demands of Members of all parties, to state clearly that there will be a full and final settlement, that there will be proper transitional arrangements hereafter, and that people so affected will have the right and direct access to the medication required to help them live with their medical conditions, while the families affected by these problems will also be helped. The tragedy of this scandal must be ended and a curtain must be drawn on it.

John Bercow Portrait Mr Speaker
- Hansard - - - Excerpts

Order. I think three minutes will suffice for the hon. Member for Strangford (Jim Shannon). The hon. Members for Central Ayrshire (Dr Whitford) and for Denton and Reddish (Andrew Gwynne) have still to contribute, and we must try now to get back in time. It falls to the hon. Member for Strangford to exercise Executive leadership in the matter.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- Hansard - -

Thank you, Mr Speaker. It is a pleasure to make a few comments in the debate. Let me first thank the hon. Member for Kingston upon Hull North (Diana Johnson) for setting the scene so well.

Let me start by quoting:

“You can’t give us back our health. But you can give us back our dignity. This tortured road has been too long for many of us. But for the rest of us, please let this be the final road to closure.”

Imagine going to a British hospital in a British city in the middle of one of the richest and most advanced countries in the world for an operation or procedure, and looking forward to getting home, but through no fault of your own, coming out infected with haemophilia or worse. We just cannot imagine what that must be like. For that reason, we must do everything we can to give people back their dignity, as one victim said to the all-party parliamentary group.

The current trusts and systems are not working as well as they could, and they are talking of doing away with aspects of the support for those affected. That is simply outrageous. Of course there are people affected by hepatitis who had nothing to do with the contaminated blood. I understand that we are talking about some 40,000 people across the country, and sadly there is an ever-growing number in Northern Ireland. Scotland has a strong track record through its “Sexual Health and Blood Borne Virus Framework”. It has set an example for the rest of the United Kingdom to follow.

Let me conclude quickly with these five points, because I am conscious of the timescale you have set me, Mr Speaker. The survivors are calling for a full public inquiry to be held under the Inquiries Act 2005 to investigate fully the events that led to thousands of British haemophiliacs and others with bleeding disorders becoming superinfected with a multitude of viruses and pathogens over many years. Full compensation for haemophiliacs and others with bleeding disorders and their families should be awarded in such a way that closure can be achieved for the majority of those infected and affected, including the widows and dependants of those who have died.

The right hon. Member for North Norfolk (Norman Lamb) made an important point about the families. He said we should not forget them, and we are all saying the same thing. We hope that the Minister will respond to that, and we want a full and comprehensive acknowledgement by the Prime Minister. He has apologised, but the apology has been lost in the delays that there have been. There are also lessons to be learned from what happened to the haemophiliacs, and measures should be put in place to protect the patients of the future. There have been missed warnings, failures to pass on test results to patients, procedural errors and non-consensual testing.

Let me conclude. Imagine being one of those innocent people, and imagine the difference that delivery on some of these aspects would make. As the testimony I quoted earlier said:

“You can’t give us back our health. But you can give us back our dignity. This tortured road has been too long for many of us. But for the rest of us, please let this be the final road to closure.”

On such a sensitive matter, we need to be able to give our full empathy and sympathy to those affected. I really believe that the Government need to deliver.

Upper Gastrointestinal Haemorrhage

Jim Shannon Excerpts
Monday 11th April 2016

(8 years, 9 months ago)

Commons Chamber
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Andrew Murrison Portrait Dr Andrew Murrison (South West Wiltshire) (Con)
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I am sure we are all very relieved to be having the Adjournment debate at this hour, rather than at two o’clock in the morning, as was previously rumoured.

I must first declare my interest as a doctor. I am grateful for the opportunity to bring forward this extremely important debate—it is certainly important for our constituents—about the management of acute upper gastrointestinal bleeding. I am grateful to the British Society of Gastroenterology, and particularly to its president, Dr Ian Forgacs, for helping me with research in preparing for the debate. The BSG has done a great deal of work over many years to highlight this issue.

Between 50,000 and 70,000 people every year are admitted with acute upper gastrointestinal bleeding, and 10% will, sadly, die. That presents a significant challenge to our national health service.

For the avoidance of doubt, let me say that upper gastrointestinal bleeding is what was so vividly portrayed by Hugh Bonneville, as Lord Grantham, in Julian Fellowes’s “Downton Abbey”. As the New York Post said, the Downton ulcer his lordship had been moaning about for weeks finally erupted all over the dinner table and all over Lady Cora. That is at the extreme end of the spectrum, but when it happens it needs to be dealt with very quickly and proficiently.

I want to start with a little bit of good news. Lord Grantham was lucky to survive in the 1920s, but mortality from upper gastrointestinal bleeding has been falling in the UK, with modest improvements in recent years as new treatments and innovative therapies have emerged, despite an ageing demographic. That is a tribute to our NHS and to some great pioneering work in therapeutics and interventions, much of which has been trialled and researched in the UK.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
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I thank the hon. Gentleman for giving way; I asked him beforehand for permission to intervene. Northern Ireland has seen some improvements by allowing relatively experimental procedures, provided they are regulated, such as nitrogen treatment systems, to name just one. Does the hon. Gentleman agree that all trusts across the UK need to share such information on any and all new developments, to advance treatments nationwide so that we all gain across the whole of the United Kingdom of Great Britain and Northern Ireland?

Andrew Murrison Portrait Dr Murrison
- Hansard - - - Excerpts

I am grateful to the hon. Gentleman, who takes an interest in these matters. He is right to say that we need to do more networking, to ensure that good practice is understood and inculcated. I will deal with some of that in my remarks.

Two major studies—one by NHS England and the British Society of Gastroenterology in 2013, and the other by the National Confidential Enquiry into Patient Outcome and Death in 2015—highlighted significant shortcomings in provision, confirming earlier studies.

The foreword to the NCEPOD report is starkly entitled “A Bleeding Shame”. NCEPOD found that the clinical care of 45% of acute GI bleed patients was sub-optimal, with a similar number receiving care judged to be good overall. Alarmingly, a quarter of all hospitals treating upper gastrointestinal bleeding were found not to be accredited by the joint advisory group set up 20 years ago to set standards for endoscopy. More hospitals told NCEPOD that they could deliver open surgery of the sort Lord Grantham had in the 1920s than interventional radiology for this particular range of conditions.

Some would say that that is down to inadequate resources. That is the mantra we often hear, particularly from the Labour party, but the situation is far more complicated than that. Alarmingly, NCEPOD reported that organisational issues led to less than satisfactory care in 18% of cases. “Organisational issues” is a polite way of saying poor management, such as failure to organise rotas—the “Bleeding Rota”, as NCEPOD graphically puts it—and I will come back shortly to how that can be addressed with minimal resource implications.

I support the concept of the seven-day NHS, or at least my interpretation of what a seven-day NHS actually means. The management of this range of conditions provides an excellent case study of why seven-day working is important and why Ministers are right to pursue it.

Overall, the evidence does not support the proposition that relatively poor weekend healthcare outcomes for conditions across the board are attributable to a lack of seven-day working. As Professor Matt Sutton’s work, reported by the Office of Health Economics last year, has shown, the quality-adjusted life-year evidence just does not support the cost of translating midweek working to the weekend. Data on increased mortality for those admitted at the weekends are alone insufficient to justify organisational change. The much cited Freemantle paper on weekend deaths does not say that excess weekend deaths are avoidable. Unfortunately, it has been quoted incorrectly by some who have confused association and causation.

Sir Bruce Keogh is right to say, however, that general hospitals are under-resourced at weekends, and the Academy of Medical Royal Colleges is right to point out that junior doctors are, to a certain extent, “winging it” out of hours, because consultants do not tend to be around to the same extent and many support functions are not, either. I remember it very well indeed. Sir Bruce was also right, in his 2013 review of 14 trusts with persistently high mortality rates, to commission Professors Nick Black and Ara Darzi to try to bottom out the relationship between excess mortality rates and avoidable deaths. Sadly, the report published last year did not seem to take us much further forward, other than to call into question the basis of the selection of trusts for the original Keogh review.

In my view, there is a firm argument for a seven-day-a-week NHS, but we need a common understanding of what that actually means beyond the soundbite. Upper GI bleeding is a good case in point, which the Government could perfectly reasonably use to support their proposals for seven-day working without resorting to selective quoting from, for example, the Freemantle paper. Most people are really not bothered about the inability to get an outpatient appointment in dermatology on a Saturday afternoon. That is a luxury bordering on an indulgence. However, if their Downton ulcer erupted on a Friday night, they would not really want to wait until a chaotic Monday morning list before getting endoscoped. They would need to be scoped on a routinely scheduled endoscopy list the following day, and they should not be subjected to delay in investigative and interventional radiology if that is necessary to manage their case optimally.

As far back as 2004, a large study by Sanders published in the European Journal of Gastroenterology and Hepatology showed that dedicated GI bleed units are associated with reduced mortality. NCEPOD asserts that patients with upper gastrointestinal bleeding should only be admitted to units with on-site endoscopy, on-site or networked interventional radiography, on-site surgery and on-site critical care. It promotes the model of comprehensive, dedicated GI bleed units in hospitals on acute medical take. We are far from achieving that.

That highlights some broader issues around right-sizing the NHS estate for optimal acute and critical care outcomes, which is a subject that I have raised before. Because critical care requires multi-specialties, because of the need for increased sub-specialisation and all that implies for populating staff rosters, and because of the better outcomes in large specialist units, not to mention the cost pressures, optimal management of this range of conditions underscores neatly the need for the model hospital concept outlined in February by Lord Carter of Coles. Why are we not moving faster towards having secondary and tertiary care in regional and sub-regional centres, where critical mass, and therefore quality of outcome, can be more readily assured?

I am proud to support a Government who are spending more on the NHS than ever before—spending, let it be remembered, that was opposed by the Labour party at the general election. However, outcomes in the UK routinely compare unfavourably with those in similar countries, with which we can reasonably be compared. I have no specific comparative data for acute upper GI bleeding, but I have no reason to suppose that they run counter to that general trend. The unavoidable truth is that our neighbours spend significantly more on healthcare than we do. The right hon. Member for North Norfolk (Norman Lamb) and I, with colleagues across the House, have called for a commission to achieve consensus on long-term funding. That is despite Simon Stevens’s five-year forward view, which does not come close to addressing what is needed to make progress, given the assumptions on which it is based, which we know we cannot rely on.

It is not just about money, however. The impression given by the studies that I have relied on is that the management of acute upper GI bleeding is a hit-and-miss affair. The BSG blames a

“lack of engagement from senior managers”

for that patchiness. That ties in with the remarks made last week by Dame Julie Moore, who said that there was a “culture of indecision” in the NHS, and that there was “gross incompetence” and a “failure of leadership”. That is pretty hard hitting from a very senior NHS manager, and I wonder how individuals can justify salaries well in excess of the Prime Minister’s if they are failing to get a grip on the sort of shortfalls described as “A Bleeding Shame” by NCEPOD. Dame Julie is right to ask why incredibly expensive senior NHS managers who are managing failure on this scale are still in post.

Last year’s NCEPOD report on acute upper GI bleeding is a wake-up call. Its first and prime recommendation —that patients with any acute GI bleed should be admitted only to hospitals with 24/7 access to on-site endoscopy, on-site or formally networked interventional radiology, on-site GI bleed surgery and on-site critical care—must be implemented without further delay. The answer is dedicated GI bleeding units that are seven-day NHS-compliant, and, with very few exceptions, no unit that cannot match the BSG’s guidelines should take patients with acute upper GI bleeding.

I look forward to hearing how the Minister will make this so. I invite him to return to the House after 12 months, if I am fortunate enough to secure another Adjournment debate of this sort, to tell us how the position has improved.

Ben Gummer Portrait The Parliamentary Under-Secretary of State for Health (Ben Gummer)
- Hansard - - - Excerpts

I thank my hon. Friend the Member for South West Wiltshire (Dr Murrison) for his wide-ranging introduction to this important matter, and for his ability to make this difficult medical subject relevant using the important context of “Downton Abbey”. Lord Grantham’s ulcer is, indeed, a filmic representation of a dangerous clinical event that can happen to people. Mercifully, its incidence in this country is relatively low when compared with that of our European partners and colleagues, although the mortality rates associated with GI bleeding are higher than we would wish. The data are not as robust as I would like them to be, and comparisons can therefore not be nice ones, but none the less mortality rates are not as low as they should be when compared with European comparators.

My hon. Friend points out a number of reasons why that should not be the case. He speaks wisely about the need for on-site site endoscopy, on-site radiology, on-site surgery and on-site critical care, all of which were recommended by the NCEPOD report. That tallies closely with the most recent National Institute for Health and Care Excellence guidelines. The guidelines specify that endoscopy should be offered to unstable patients with severe acute upper gastrointestinal bleeding immediately after resuscitation and offered within 24 hours of admission to all other patients with upper GI bleeding.

Reports from NHS Improving Quality and the National Confidential Enquiry into Patient Outcome and Death, to which my hon. Friend referred, go further and state that that will require the appropriate structures to be in place at all hours of the day and on all days of the week. As he reflected, that tallies well with the aims of the Government in producing a seven-day NHS, although I will, if I may, take issue with certain aspects of his comments in a few moments.

The audit of endoscopy services for acute upper gastrointestinal bleeding in 2007 found that only half of all acute trusts in England were compliant with NICE guidelines in this area. The most recent survey has shown some improvement. In 2013, 62% of services are able to provide a formal 24/7 rota for endoscopy specialists, and 56% of services can offer acute admissions for endoscopy within 24 hours of admission. While this is an improvement, there is clearly a long way to go if only 62% and 56% of services respectively provide the kind of provision we expect. Our aim, therefore, is to ensure that every patient has 24/7 access to safe, high-quality GI endoscopy services with facilities to perform an interventional procedure linked to other essential interventions, such as interventional radiology and surgery. High-quality care will not only reduce mortality and complications but increase early discharge, through the use of formal risk assessment scores, and reduce lengths of stays.

It is therefore important that those services are available to those patients at all hours of the day, and on all days of the week. That is why we have made clear our commitment that, by the end of this Parliament, patients with urgent and emergency hospital care needs will have access to the same level of consultant review, diagnostic tests and treatment seven days a week; patients with upper GI bleeds will be one of many cohorts of patients to benefit from that.

At this point I should be very clear in my response to my hon. Friend. He restated the position, often quoted by Opposition Members, that somehow there is a lack of definition about our intentions for 24/7 services. I say to him gently that we have been very clear indeed about how we believe the seven-day NHS will be delivered. In secondary and tertiary care, it will be based entirely on the needs of urgent and emergency care pathways. Those pathways have been outlined in 10 clinical standards brought together by the Academy of Royal Medical Colleges, under the chairmanship of Sir Bruce Keogh. Those 10 clinical standards have informed the policy we have developed on urgent emergency care, which will be announced and rolled out in the weeks and months to come.

We could not have been more clear, both in this place—I believe we have been clear to my hon. Friend—and to the public at large, that our intentions for a seven-day NHS are rooted in the provision of a consistent urgent and emergency care pathway for patients. We have never intended to mandate from the centre non-acute dermatological services, as he suggested, or any other service like that.

Clearly, to support good 24/7 services in hospitals we have to be able to provide exceptional diagnostic services. Whatever the lacunae in the current evidence base around particular specialties in the NHS—we are never going to have a full picture in the way we might wish—we can draw general conclusions. One, which my hon. Friend rightly drew, is that the quality of diagnostics needs to be consistent, people need to have access to those diagnostic services on a regular, rigorous, robust and consistent basis, and those services need to be available on a Saturday night much as they would be on a Monday morning. That is why the Government’s intentions on 24/7 services involve consistent diagnostic services, as we have made clear since the beginning of the policy.

It is important to explain how those services will become priorities for trusts. In the roll-out of a consistent 24/7 service in diagnostics, we want to be clear to trusts about exactly what is expected of them. Patients admitted as an emergency should be seen as soon as possible by a consultant for review, but at least within 14 hours of arrival at hospital. In-patients must have scheduled seven-day access to the full range of diagnostic services, including endoscopy, with reporting of results within one hour for critical patients and 12 hours for urgent patients. In-patients must also have timely 24-hour in-patient access to consultant-directed interventions such as critical care, interventional radiology, interventional endoscopy and emergency general surgery, either on-site or through formally agreed network arrangements. Finally, all acutely ill patients in high dependency hospital areas, such as the acute medical unit and the intensive care unit, must be seen and reviewed by a consultant twice daily.

I hope my hon. Friend will see that we are already encapsulating his principal demands about upper gastrointestinal bleeding in the general outline of the clinical standards that we plan to roll out to ensure consistent quality of care for urgent and emergency care pathways.

We will monitor the implementation of those clinical standards through transparent metrics, and I hope that in a year, if my hon. Friend is successful in securing a further Adjournment debate—I would happy to brief him privately on this issue both then and in the interim—he will see that through the transparent metrics that we will publish on mortality, length of stay, emergency readmissions and whole series of other measures, there will be trust compliance across clinical standards.

Jim Shannon Portrait Jim Shannon
- Hansard - -

I understand that mortality rates for hospitalised conditions can be as much as 35%. That worries me, and I am not sure whether the Minister has addressed that issue. He referred to 10% mortality, but some hospitalised conditions have a 35% mortality rate. We must address that.

Ben Gummer Portrait Ben Gummer
- Hansard - - - Excerpts

There is variation in mortality, and I hope we will make progress in that area over the next period. We must understand comparisons of mortality across the country, and as the hon. Gentleman knows, the Secretary of State is interested in discovering and understanding that issue. We must also understand variations across the European Union, and in the United Kingdom where there are apparent variations between practice in England and that in Scotland, Wales and Northern Ireland. Some of that comes down to data collection, but we must understand where it comes down to practice and consider how we can improve in accordance with our most neighbourly health systems.

Junior Doctors: Industrial Action

Jim Shannon Excerpts
Thursday 24th March 2016

(8 years, 9 months ago)

Commons Chamber
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Ben Gummer Portrait Ben Gummer
- Hansard - - - Excerpts

The new trade union legislation does not apply to doctors in the way my hon. Friend suggests, but I appeal to them and their consciences not to withdraw emergency cover and put patients at an increased risk of harm.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- Hansard - -

In Northern Ireland, we have become experts in compromise and reaching agreement. We have had to come to terms with difficult issues and compromise on many things. The Northern Ireland Assembly Health Minister is in talks with the BMA and junior doctors to find a tailored solution for Northern Ireland that is affordable and has patient safety at its heart. Does the Minister not agree that it is time to get round the table, meet the BMA and junior doctors and realise that compromise between all parties can and often does reach a fair solution for all?

Ben Gummer Portrait Ben Gummer
- Hansard - - - Excerpts

The contract is a compromise. We have compromised in a series of areas to try and reach a settlement, and 90% of it has been agreed with the BMA, but in the absence of talks—one party refuses to discuss the remaining items on a point of principle—we have to move ahead with implementation. That train has now left the station, and we will be bringing in the new contract later this year.

Oral Answers to Questions

Jim Shannon Excerpts
Tuesday 22nd March 2016

(8 years, 9 months ago)

Commons Chamber
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Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
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What discussions has the Minister had with her counterpart in Northern Ireland regarding the reduction and eventual eradication of hepatitis C? Does she agree that it is important to have a strategy that encompasses the whole United Kingdom of Great Britain and Northern Ireland?

Jane Ellison Portrait Jane Ellison
- Hansard - - - Excerpts

Absolutely. The consideration of all aspects of how we eliminate hepatitis C over time is important, but we should not underestimate what a difficult job that is, largely because an awful lot of people are not aware that they have it—they are asymptomatic and therefore much of the burden of the disease is not visible to us. However, there is always more we can do, and we continue to make this issue a priority.

NHS: Learning from Mistakes

Jim Shannon Excerpts
Wednesday 9th March 2016

(8 years, 10 months ago)

Commons Chamber
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Jeremy Hunt Portrait Mr Hunt
- Hansard - - - Excerpts

We do have a system-wide problem in Leicestershire and we are looking into it urgently. I thank my hon. Friend for raising the issue. He is absolutely right that when we talk about safety and being open about mistakes, that has to apply to the ambulance service as much as to every other part of the NHS.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- Hansard - -

May I also welcome the Secretary of State’s statement to the House? In particular, I welcome the commitment to building a safer, seven-day NHS. In Northern Ireland, we have just announced 1,200 new nurses, 300 new professionals, extra money for autism and mental health care and, just this week, extra money to address waiting lists to build a safer, seven-day NHS—that is what we want.

The Secretary of State referred to learning from mistakes, the need for an extension of trusts’ disciplinary procedures, openness to learning and a charter for openness and transparency. What discussions has he had with the Northern Ireland Assembly Minister, Simon Hamilton, about ensuring that that system can be replicated in Northern Ireland and by regional Assemblies and Administrations across the whole of the United Kingdom of Great Britain and Northern Ireland?

Jeremy Hunt Portrait Mr Hunt
- Hansard - - - Excerpts

My colleague, the hospitals Minister, will have those discussions with the Northern Ireland Health Minister. However, the hon. Gentleman is right that if we are going to have a learning culture, it needs to be across the UK, not just in England. That is why I welcome the discussions we have with the Scottish NHS and the Welsh NHS. There are things that we can learn from each other, and we should be very open-minded in doing so.

Autism Diagnosis Waiting Times

Jim Shannon Excerpts
Tuesday 8th March 2016

(8 years, 10 months ago)

Westminster Hall
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Jo Cox Portrait Jo Cox
- Hansard - - - Excerpts

I agree entirely, and one of the worrying things that became apparent to me in my research for this speech is the growing regional disparity in autism diagnosis waiting times, as well as in the service someone gets once they have a diagnosis. Let us hope that the Minister addresses that point.

My constituent from Batley has given up his job so that his son can attend school every day. As I have said, the problem exists not just in my constituency, but up and down the country, and stories from the NAS highlight that. There is Mel from Watford, whose son waited nine years. Noah, who is four, waited two years for his diagnosis—that is half his life. Meanwhile, data from Public Health England from the latest adult autism strategy show huge regional variation in adult services, with waiting times between referral and first appointment —not even the whole diagnosis journey—in the south-west reaching 95 weeks. In my region of Yorkshire and the Humber, it is 84 weeks. The NICE quality standard on autism is clear: once referred, people should wait no longer than three months before having their first diagnostic appointment. For this to happen, the Government, local authorities and NHS England need to act.

In my own local authority, Kirklees, despite strong leadership and a clear commitment to protect and safeguard vulnerable children and adults, there is an acknowledged crisis in children’s mental health and autism services. Some families have been waiting more than two years for a diagnosis, often longer. I have been encouraging Kirklees and its clinical commissioning groups to clear the backlog and redesign their services, and I am pleased to announce that, starting last Friday, a plan to clear the backlog within 12 months is now being rolled out regionally. This will quadruple the number of diagnoses that can take place in my constituency.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- Hansard - -

I congratulate the hon. Lady on securing this debate. Autism diagnosis across the whole of the United Kingdom of Great Britain and Northern Ireland is a big issue. In Northern Ireland, some 2,000 young people are waiting for a diagnosis, although the Minister has set some money aside. There is a need not only for early diagnosis, but for further stages of the education programme as well. Does the hon. Lady agree that the Minister should consider what has been done regionally—in Northern Ireland, Scotland and Wales—because there are lessons to be learnt that would benefit all of us?

Jo Cox Portrait Jo Cox
- Hansard - - - Excerpts

I agree entirely. It is time for the Government to bring a wider discussion about autism services to the Floor of the House.

My local authority’s announcement last Friday now means that we will quadruple the number of diagnoses that can take place in my constituency. It still needs to redesign the service in a way that prevents future backlogs, but this is good news for Batley and Spen and for people across Kirklees. However, it should not go unacknowledged that local authorities such as mine are working hard to reform services in an environment of severe and disproportionate budget constraint, imposed on them by Government. Of course, this is just one local authority; what about the hundreds of others and the desperate families in their care?

We also now have to accept that this failure to diagnose autism early ends up costing taxpayers much more. When developing its guidance for health services, NICE stated:

“Investment in local autism services also contributes to: a reduction in GP appointments, fewer emergency admissions and less use of mental health services in times of crisis, including the use of inpatient psychiatric services.”

Medical Centre (Brownsover)

Jim Shannon Excerpts
Monday 7th March 2016

(8 years, 10 months ago)

Commons Chamber
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Mark Pawsey Portrait Mark Pawsey (Rugby) (Con)
- Hansard - - - Excerpts

I am grateful to have secured the debate, which gives me the opportunity to raise an important issue in my constituency. I will speak about the delays that have occurred, over several years, in the provision of a new medical facility in the area of Brownsover, in the town of Rugby.

Rugby is one of the fastest growing towns in the country, and we have a positive attitude towards new development. There has been a great deal of new housing development in recent years, mostly in the north of the borough in and around the area known as Brownsover. Historically, Brownsover has faced a number of complex challenges, which the community and the local authority, Rugby Borough Council, have not shied away from. A lot of investment has been put into overcoming those challenges. The area comprises a mix of social, sheltered and affordable housing as well as privately owned homes, with a population made up of a broad range of different age groups. A large number of young families live in the area, as well as a substantial elderly population. Despite the much-welcomed investment in Brownsover, with additional retail outlets and new housing, and the significant increase in population that has come with it, we have yet to see significant investment in the vital area of local health provision.

The original doctors’ surgery, which dates back 50 years or so, was established as the area developed. Despite the growth of the area and of the population, there is no evidence that the surgery was extended or that there was any recognition of the need for a bigger surgery. Plans for a new medical facility in Brownsover were first proposed back in 2002. The local authority, conscious of the specific needs of the area, began working on plans, under which it would supply land it owned, free of charge, to a developer willing to provide a community centre, alongside an all-encompassing modern medical facility, as part of the wider plan to revitalise the area.

The years passed, and for many years there was no progress, but plans for a new medical centre resurfaced in 2011. A planning application was submitted to the local authority and was approved that year. At the time, there was a real expectation that work would begin the following year, but, once again, local residents were left exasperated as the months and years passed and no works were begun. The community, which had been so optimistic when plans were first revealed in 2002, was once more left angry and frustrated—even more so when they were forced to watch from the sidelines as plans for new medical facilities elsewhere in our growing town were approved, particularly a very smart new development on the old cattle market site.

I hope the picture I am painting shows that, for many years, my constituents in Brownsover have suffered disappointment after disappointment, and false promises and false dawns about getting their new medical centre. I must say that the anger in the community reached a tipping point in February 2015, when the news broke that NHS England had withdrawn the contract for the existing local GP practice in Brownsover and that the practice was to close in April—just three months later—which left little time to arrange alternative facilities within the community. The announcement was met with considerable fury within the community, which, as I have said, has complex needs and challenges.

The news of the closure of the GP surgery caused real disquiet within the community. A GP, who was held in high regard, had practised there for 30 years, and this much-valued and much-needed facility—as I have said, the only one in the urban area in the north of Rugby—was serving over 6,600 patients in partnership with its sister surgery in the town centre. Residents felt at ease with the local GPs, who in turn knew the residents’ medical history. There was real concern at the sudden nature of the news. I will come on to the actions taken by NHS England to deal with that concern.

To its credit, one of the first things NHS England did was to provide an opportunity for local residents to pose questions in a series of public meetings. The community expressed real anger at those meetings. They took place on 2 and 9 March, while Parliament was sitting, and on Friday 13 March 2015, when, as I was in my constituency, I was able to attend the one in Brownsover scout hut. The concerns of some pretty angry residents revolved around three issues: first, the lack of notice they had received; secondly, the interim arrangements that would be made; and, thirdly, whether the new surgery they had been promised would actually be delivered, given that they had been given such promises many times before. At the meeting I attended, residents were assured that the new surgery would be provided, and that it would open in the late summer or autumn of 2016.

The news that the new surgery was coming was intended to be the light at the end of the tunnel to appease an incensed community, but there was concern over whether the assurances would be fulfilled. When I attended the meetings, it seemed to me that a delivery time of 18 months was rather optimistic. It seems that that caution was justified, because we are yet to see evidence of any activity to supply the new surgery. There is absolutely no evidence of a spade getting anywhere near the ground. I have recently described the delays in delivering this provision as completely unacceptable. The original opening date of autumn 2016, which was promised by NHS England in the public meetings and to me in meetings in my office, will definitely not be realised.

It is a matter of regret that NHS England has not covered itself in glory in this matter. The news of the closure first came out in February 2015 and patients were informed by letter that the practice would close its doors on 17 April that year. I was notified by NHS England by email on 16 February. That led to a flurry—an avalanche, in fact—of emails from concerned constituents. There was concern about the method by which the news was communicated. One resident showed me a two-page letter that had details on only one side of the piece of paper, leaving them to guess what the other information might be.

The intention was that the surgery would close within three months and that residents would be able to register at a new temporary surgery some 2 miles away in Rugby town centre while the new surgery was built. The distance of 2 miles to the site in Lower Hillmorton Road was a concern for many of the residents for whom it would cause difficulties. Many of those with young children or with particular health needs felt that travelling to the temporary practice would be too much to bear, despite an offer from NHS England to provide transport for residents.

It is easy to understand why people were concerned when the facility in their community had been taken away and a new one had been promised for a number of years. Within the community, we managed to convey the message that there would be some temporary pain in order to achieve a long-term gain. Regrettably, that long-term gain seems to be some distance away.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
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This debate is not about my area, but I am curious to know whether any consideration has been given to the increasing population? In Belfast, the population will double in the next 20 years, so Northern Ireland has to look forward strategically and have a long-term vision. Has consideration been given to population growth in planning the new surgery? Is it not time for the Government to look to the long term and create the provision for the next 20 or 30 years?

Mark Pawsey Portrait Mark Pawsey
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The hon. Gentleman raises an interesting point. To a certain extent, that involves chasing a moving target. The surgery that was in the community was completely inadequate for the needs and size of the population. I fear that some of the delays in the delivery of the new surgery are happening because we are trying to anticipate what will be needed in the future. The sense in my community is that we do not have anything now, so let us get on with delivering what has been promised for many years.

I met NHS England in February last year and learned about the temporary arrangements for transferring patients to Lower Hillmorton Road and the cost involved in modifying those premises, which had been deemed inadequate for use as a surgery. Money was therefore spent on that building. I also heard about the plans for delivering the new surgery. Again, I was told that it would be delivered in the late summer or autumn of 2016. I was keen to do all that I could to ensure that those commitments were met. I kept in contact with NHS England and representatives of the Brownsover patients action group, which came together under the capable leadership of Jake Stevenson.

In the second half of 2015, some of us perhaps took our eye off the ball and thought that plans were being worked up and that work would start imminently—we simply waited for things to happen. Things came to a head in early 2016 when, after visit after visit to the site, nothing seemed to be happening and I thought that it was probably time to arrange a further meeting with NHS England, and to invite representatives from the Brownsover patients action group. We also invited NHS Property Services, which had come to take over the project. At that meeting in January or February this year I became increasingly concerned about the lack of progress, and it became clear that the opening of the surgery would be put back for one, two or three years—it was not clear exactly when it would be, because a new business plan needed to be put in place and that was still being worked on, despite previous assurances that the work was going out to tender.

It was equally alarming when we were told at that meeting that it was now possible for a practice to be put into the original buildings on the Brownsover site, which we had originally been told was unsuitable. We learned that that site was to be brought back into operation on a temporary basis, having closed for a year and with 6,600 patients relocated to new practices in the town. For many of my constituents, being told that the old site would once again be available might have been good news, but it meant that the new surgery that the community had been waiting for would be delayed. We now hear that the old site will be made available as a temporary site for three to five years, and we do not believe that that is temporary—it is getting close to being permanent once again.

There are no issues with the availability of land because the local authority will make the land available, and no issues of planning consent because that has already been granted. It seemed that bureaucracy and red tape within the system was going to cause a significant and unacceptable delay, and the light at the end of the tunnel that was promised to my constituents was fading fast. At that point I contacted the Minister, who I am delighted is in his place, and I alerted him to the situation. I am grateful to him for meeting me so swiftly after we made contact.

A couple of weeks ago on 22 February, I and Jake Stevenson from the Brownsover patients action group met the Minister, together with representatives from NHS England and the Department of Health, to outline our concerns. One outcome of that meeting has been that NHS England has become a lot more communicative. It was kind enough to email me on 1 March to update me and advise me that it has awarded a contract to a company to assist it with the business case for the medical centre. That is not a contract for building or delivering the surgery, just to assist with the business case. It is disappointing that in the past 12 months we have got absolutely nowhere. We are no further forward than we were this time last year, and clearly the promises that were made will not be realised.

One key reason why I have brought this matter to the attention of the House is the long history of disappointments that my constituents in Brownsover have gone through over the years. We are now looking for firm assurances that whatever date we are given for the delivery of the new service, it will finally be delivered.



I am very grateful to the Minister for the attention he has given to this matter so far, for the understanding he displayed to members of the patients action group when he met them, and for his sympathy. It is clear that the Minister gets it. He understands why the delivery of the surgery is so important. I was very impressed by his willingness to bring parties together, to talk around the table and to bring about a solution to the challenges in getting this very important provision delivered at the earliest opportunity. I very much hope that in his response to my remarks he will be able to provide the assurances my constituents in Brownsover are looking for.

End of Life Care

Jim Shannon Excerpts
Wednesday 2nd March 2016

(8 years, 10 months ago)

Commons Chamber
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Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
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Thank you, Mr Deputy Speaker, for giving me the chance to speak on this issue. According to the End of Life Care Coalition, in the 12 months since the “Choice” review was published, almost 50,000 people experienced poor care during the last three months of their lives.

Some right hon. and hon. Members have clearly said that they are speaking from a family point of view, and I heard some of their speeches in the Chamber. Twelve months ago today my father passed away. My dad always wanted to die at home, but that was not possible. He had fallen out of bed and broken his femur. It was quite impossible for my mum to give him the care that he had to have, so he passed away in hospital. I have some experience of end-of-life care in hospitals, and I must say that I commend those involved: first, my mother, who was very loyally and religiously attentive to him, but also the nurses, who particularly helped and were very attentive and caring.

The 2015 report from the Parliamentary and Health Service Ombudsman, “Dying without dignity”, demonstrated the consequences of people dying without access to high-quality care and support. It highlighted cases where people had died in distressing circumstances, which had a lasting impact on their friends and families. That is what we are focusing on today. Unfortunately, research by the London School of Economics suggests that such situations are not as rare as they should be. The people who tend to miss out on palliative care are those with conditions other than cancer, those over the age of 85, single people and people from black and minority ethnic communities. Quite clearly, those are issues.

Research conducted by Ipsos MORI and Marie Curie—many of us met those from Marie Curie in Parliament yesterday—have found that seven out of 10 carers thought that people with a terminal illness were not getting all the care and support that they need. I commend the Marie Curie nurses for the hard and very attentive work that they do. Again, I have experienced that personally because a good friend of mine, Irene Brown, passed away just last week. Marie Curie helped her and her family greatly near the end of her life.

We have had ongoing worries and troubles about care homes in my constituency, with the threat of closures compounding the misery for people who need help the most and who already have to deal with an over-pressed and strained health service. I have to say, with respect, that the fact that such issues are not at the top of the priority list only serves to strengthen the disillusionment with the Government.

Alison Thewliss Portrait Alison Thewliss (Glasgow Central) (SNP)
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Does the hon. Gentleman share my concern, which was highlighted by some of the Marie Curie nurses I met, that while they very much want to do an excellent job in looking after they people they serve, they cannot do so all week but only on a couple of days, with less experienced staff coming in to fill in the gaps?

Jim Shannon Portrait Jim Shannon
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I obviously agree with the hon. Lady. I understand exactly what she says, as I think does everyone in the House. The Marie Curie nurses are special nurses and they do a grand job.

The issue of state-assisted suicide has been mentioned. We have had a debate in the House and a clear decision has been made, by an outstanding majority, that there is no need for it, and we will keep that going. We do not need to discuss the matter, because it has already been decided.

I want to refer quickly to the significant improvements to end-of-life care in Northern Ireland with the ambitious “Transforming your care” plan. Although there is still a long way to go, I ask the Minister sitting on the Front Bench, who is always very responsive, to look at what all the devolved regions have been doing, not least Northern Ireland, to ensure that the best strategy known and available nationwide is being implemented so that the figures I led with are reduced as much as possible and as fast as possible. We all know people or have known people going through this period of their life and, young or old, it is a reality that all of us will face some day. The UK Government and the devolved Governments need to do better on this issue to give ordinary, everyday, hard-working people the treatment they deserve at such a distressing time.

I will conclude on this point because I am conscious that other Members wish to speak. If the Government have been taking action on this issue, they need to make that clear and publicise it, despite the obvious delay. In other words, are the Government giving end-of-life care the focus and money it needs, and are they working with charities and hospices to ensure that it is delivered? It is true that there should be no timescale for coming up with the best solution, but it is equally true that there has been insufficient explanation as to why the timescale has been delayed. I know that the Minister will respond to that. That delay is compounding the misery for people who are affected by this issue and their families. When it comes to end-of-life care, let us ensure that we deliver for our constituents.