Epilepsy

Jim Shannon Excerpts

Tuesday 29th January 2013 Commons Chamber

[Kate Hoey (Vauxhall) (Lab)]

I thank Mr Speaker for granting this Adjournment debate, which serves to give the relevant Minister—who I am pleased to see has just arrived in the Chamber; perhaps I rose to speak a little too quickly—an opportunity to update us on how some of the changes to the health service locally and nationally, such as in respect of commissioning, will help to improve the lives of those who suffer from epilepsy.

My hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe) secured a Westminster Hall debate on epilepsy in November 2011 and my hon. Friend the Member for Walsall South (Valerie Vaz) introduced an excellent ten-minute rule Bill on epilepsy in November 2010. I am pleased to see that the chair of the all-party group on epilepsy, the hon. Member for South Thanet (Laura Sandys), is present.

As is the case for all Members, hundreds of my constituents suffer from epilepsy, and I am grateful to many of them for their input into this debate. I am especially grateful to Ashleah Skinner, who has a great deal of knowledge of and interest in epilepsy and disability issues. No one understands the difficulties and challenges that face epileptics better than those who suffer from the illness.

For the record, I should point out that epilepsy is defined as a tendency to have recurrent seizures, sometimes called fits. The seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption of the normal messages passing between brain cells. Epilepsy is, of course, not one condition but a composite of about 40 different types of seizure and up to 50 different syndromes.

An epilepsy diagnosis can be a shattering blow to the individual concerned. All sorts of things that have been taken for granted are no longer automatic: they might lose their driving licence, for instance, or their employment, which might in turn lead to benefit dependency. Approximately 600,000 people have epilepsy, which is about one in 100 people, and every day about 87 people are diagnosed with it, which amounts to 32,000 each year.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this very important health issue to the Floor of the House. One other issue relating to epilepsy that my constituents raise with me is holiday insurance. Does she think we should be doing more about that, whether directly with the insurance companies, with the overall body or with individuals?

[Kate Hoey]

I thank the hon. Gentleman for his intervention, and I know of his continuing interest in this issue and the contributions he has made in the House. If we were to get into a discussion about insurance and travel, I could talk a great deal about the discrimination that some travel companies display, and obviously he has particular expertise in this issue. Such discrimination is all part of a lack of understanding and knowledge of epilepsy among the general public, which runs through this whole debate. That perhaps applies to travel companies as well.

About 1,150 people a year die from epilepsy, with three dying every day, and about 40% of all these deaths and 59% of the childhood deaths are potentially avoidable. However, the new research shows that the level of epilepsy mortality is rising. Achieving absence of seizure—freedom from seizure—is key to saving lives and saving money, as well over 100,000 people are living with avoidable seizures. Just last week, Epilepsy Action, one of the important charities within the Joint Epilepsy Council, which brings together all the campaign groups on epilepsy, published a new report “A Critical Time for Epilepsy in England”. Its launch was hosted in the House of Commons by the all-party group on epilepsy, which is chaired by the hon. Member for South Thanet. I recommend the report to anyone who wishes to find out more about what more needs to be done.

Between April and September 2012—the report is very up to date—Epilepsy Action carried out a survey of clinical commissioning groups, acute trusts, local authorities and people with epilepsy. I have read the report and it backs up a number of the trends that I have heard about and a number of the concerns that individual constituents have raised with me.

[Jim Shannon]

Will the hon. Lady give way?

[Kate Hoey]

I will. We have slightly more time tonight, although I know that perhaps not all Members here want to stay until 7 pm.

[Jim Shannon]

I thank the hon. Lady for her graciousness in giving way again. Some 20,000 people in Northern Ireland have epilepsy, which is one in every 90 people. Does she feel, as I do, that the immensity of the scale of epilepsy in the population is unknown? How can we raise that profile and make more people aware of what is happening?

[Kate Hoey]

I was pleased to see just how much discussion there had been in the House of Commons on this issue, and it is crucial that we, as individual MPs, raise it more with our local authorities, health acute trusts, hospitals and GPs, as understanding is so important in this matter.

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[Kate Hoey]

I thank my hon. Friend, and I referred to her ten-minute rule Bill. As the Minister has slightly longer than he thought for the winding-up speech, it would be helpful if he referred to progress on my hon. Friend’s Bill. I appreciate that he is a Health Minister, but I want to raise some issues that relate to employment, welfare and benefit rights. If he cannot answer my questions, I hope that he will ensure that the responsible Minister does so.

There is no doubt that most people with epilepsy want to work, but many of them require additional support. Government schemes, such as Access to Work, can be beneficial to people with epilepsy by getting them off benefits and into work, which should always be a top priority.

I was surprised to learn from a recent parliamentary written answer that the Access to Work scheme in England and Wales between May 2010 and 30 June 2012 helped just 1,360 individuals with epilepsy. In my constituency no one with epilepsy was helped by the Access to Work scheme. There seems to be a lack of awareness of the scheme and inadequate information being given to people. I hope the Minister will continue to address the problem. Many constituents claiming sickness benefits want to work, but have ended up on benefits because they did not have the proper support when they were in employment. The Access to Work scheme could have prevented them from leaving employment. It is in the Government’s interest to take the matter seriously.

[Jim Shannon]

The hon. Lady has been very kind in giving way. I know she is trying to get as much time on the subject as she can. There is another important issue: disability living allowance for those who have epileptic fits and may need extra help. Does she think that one of the Minister’s colleagues in the Department for Work and Pensions may be able to do more for those with epilepsy to ensure that they get all the benefits that they are entitled to, particularly DLA?

[Kate Hoey]

That is an area that I am coming to. It is extremely important. I appreciate that the Minister responding to the debate is a Health Minister, but I know he can multi-task on some occasions.

I was disappointed to learn from another parliamentary written answer that between June 2011 and July 2012 only 20 individuals in receipt of employment and support allowance—incapacity benefit—whose reported primary medical condition was epilepsy received what is called a job outcome as part of the Work programme. There are cases in which individuals with epilepsy are unable to work, but it falls upon the Government to provide unconditional support through welfare, such as employment and support allowance.

The NICE guidelines on epilepsy make it clear that epilepsy may sometimes result in significant disability, social exclusion and stigma, which many Members have mentioned, and that people with epilepsy would commonly encounter problems in employment. According to the work capability assessment handbook, the Atos working group panel on epilepsy was clear that if a person has epilepsy which occurs less than once a month, that is unlikely to impact significantly on their ability to work. I urge that consideration is given to the effects of the disorder on each individual, rather than making such a blanket ruling.

From another parliamentary question I discovered that in February 2012, 12,510 people in England with epilepsy as their primary medical condition claimed ESA, which equated to approximately 30 people in my constituency, and during the same period 32,090 people in England with epilepsy claimed either incapacity benefit or severe disability allowance, which equates to 70 people in my constituency. Finally, during the same period, 59,070 people in England with epilepsy claimed disability living allowance, which equates to approximately 100 in my constituency. There is concern that such figures are not always based on knowledge of the person and of epilepsy.

There are obviously cases where an individual who may drive as part of his job, for example, subsequently has a seizure. Under current Driver and Vehicle Licensing Agency regulations that person would be prohibited from driving for 10 years without medication. That sometimes means that he would lose his job and end up on benefit. The whole employment and support allowance system is insufficiently sympathetic in such scenarios and ends up worrying the individual with numerous mandatory schemes, sanctions and loss of benefits. It is one of the flaws in the system that needs to be dealt with to show that people are taken seriously and treated as individuals.

Terminal Illness (Access to Medicines)

Jim Shannon Excerpts

Wednesday 23rd January 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for The Cotswolds (Geoffrey Clifton-Brown) on bringing the matter to the House. I want to focus on the end-of-life issues that he dealt with in the second part of his speech. Obviously those concern us all, but I want to concentrate on them because of several interactions that I have had with constituents on the subject, and because there is a need for drugs. I am confident that the Minister will respond positively and I look forward to her comments.

I have spoken recently about ending the so-called GP death list—a term that I use very carefully; some people see end-of-life issues in that way and are concerned. I was shocked when I read an article that stated that thousands of patients have already been put on those so-called registers,

“which single them out to be allowed to die in comfort rather than be given life-saving treatment in hospital”.

That is one thing that has emerged from discussions that have taken place. The article states that nearly 3,000 doctors have promised to draw up a list of patients they believe are likely to pass away within a year. It is claimed:

“As part of an unpublicised campaign endorsed by ministers, GPs have been encouraged to make lists—officially known as End of Life Care Registers”—

which the hon. Gentleman mentioned towards the end of his speech—

“of people they believe are going to die soon and should be helped to do so in comfort.”

That is the terminology that is used. In my opinion if a patient refuses further treatment this is their decision, not the doctor’s. Treatments must be made available throughout the NHS to those who want and need them—those who need care.

How many times have we heard of patients with no hope suddenly going into remission? An example concerning a child with cancer recently came to my attention. The doctor advised no more treatment, but the sister of the little boy was not ready to say goodbye, and for her sake the family asked for one more course of chemo to prolong the time left and prepare the other child for the expected death. The little boy responded to the chemo that was given in the hope of allowing a few more weeks of life; but that time has turned into six months. Who knows what the future holds? The point I am making is that there are probably many examples from across the United Kingdom where a wee bit of extra effort can be made and where it may not be necessary to prepare for the inevitability of death, if there is also a possibility of life through drug treatment. Imagine if that family had not been allowed to ask for, or the doctor had had the power simply to refuse, the last bout of chemotherapy. That is not an everyday occurrence, but it does happen and it should give us reason to pause and think before making drastic moves.

In 2008 the Labour Government announced a range of proposals aimed at improving the care available to patients with life-threatening conditions. They stated that a key part of the new proposals was a change to the way the National Institute for Health and Clinical Excellence decides which medicines are approved for diseases that affect only small numbers of people. The hon. Gentleman focused in his speech on some diseases that do not kill a great many people in the United Kingdom, and on which, therefore, drugs companies do not spend money; but perhaps they should. I want to discuss that issue. What has changed in the past five years? Is there a greater availability of drugs? I am not sure that that is the case, and would appreciate confirmation from the Minister of how many more medicines have been approved on the list. Many UK universities do great work investigating drugs and conducting research with pharmaceutical companies, and Queen’s university Belfast is one of them, at the forefront of the good work being done on new drugs for ailments including cancer, diabetes, and dementia and Alzheimer’s. Students come from all over the world to do research and to learn there. I commend the university, which has been able to source individual funding, and the many other UK universities doing similar work.

The campaign Empower: Access to Medicine, set up by a man suffering from motor neurone disease, recently caught my eye. The campaign calls for a review of the law and ethics on drug development, as it takes many years and billions of pounds to take a new drug to market from A to Z. The last drug licensed for motor neurone disease, which damages the nervous system, leaving muscles wasted and weak, was riluzole, which has been in use for 20 years. Can there have been no scientific advances since then? I do not believe that. Les Halpin has commented that

“to see primarily it’s the regulations that are slowing the whole process down, it just means we could be waiting an awful long time until a new drug is produced.”

I have a dear friend, whom I have known for many years, who has motor neurone disease. I have seen a healthy man go from being a fun person in the peak of health to someone wasting away in a chair. The drugs have given him a longer life, and perhaps a better quality of life latterly, but they cannot stop the onslaught of the disease. The finality of what will happen to him is clear.

[Mr Gregory Campbell (East Londonderry) (DUP)]

Does my hon. Friend agree that beyond the difficult and onerous issue of NICE approval of drugs that he and the hon. Member for The Cotswolds (Geoffrey Clifton-Brown) outlined, and which needs to be resolved, is the cost of drugs, post-approval? We need more work to be done on dragging down the cost, to make them more accessible.

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[Jim Shannon]

There are parts of the world where drugs can be made more cheaply, and they include India. The drugs in India are equal to those made in the USA, for example, but can be made more cheaply. Why do not we obtain those similar drugs, at a cheaper price, so that we can provide the relevant care, as my hon. Friend has suggested? We should take that on board.

[The Parliamentary Under-Secretary of State for Health (Anna Soubry)]

I hope that the hon. Gentleman will be interested to know that last week I went to India where I had that precise conversation with several organisations. We hope that a memorandum of understanding will emerge, involving the regulatory bodies with which I had meetings. The hon. Gentleman is right to point out that we can take advantage of the great work being done in India to produce medicines that are just as good as those made anywhere else, and often at a fraction of the price.

[Jim Shannon]

Those are the sort of responses we hope to hear, because they show that the Government are working. The Minister, as we knew she would, has come up with a practical, physical response, and is doing the things that we have been hoping will come out of the debate. I thank her for initiating the process she outlined, and for moving things forward.

I am pleased to support the hon. Member for The Cotswolds in his cause of drawing attention to motor neurone disease, cancer and other illnesses, so that a treatment path will not be simply a step along the road to the end of life, but may enhance the quality of life. Perhaps a successful treatment path can be developed. According to Empower: Access to Medicine,

“Speeding up the development and availability of drugs that treat life-threatening diseases would benefit everyone in society.”

I believe that too. Everyone present will know people whom new drugs could help. The current testing and development process is long, cumbersome and expensive. In fact, a recent report by the Office of Health Economics found that it takes five years, on average, after the launch of a new drug, to win NICE approval. That time scale can be more than doubled when the time taken for a new drug to go from the development stage through to phase 3 and beyond is added. As an example, no new drug has been approved for motor neurone disease since riluzole was approved 20 years ago. Are we happy to sit back and rely on that one drug, or should there be more research? We need more research; we need to fund it, and we need it to be made possible.

Currently, pharmaceutical companies do not have a financial incentive to invest in developing new drugs for rare or “orphan” diseases—I am being careful in my terminology—because of the small number of the population who are affected and the high and uncertain costs of the drug development process. The drug regulatory regime is therefore clearly having a significant impact on those with life-threatening and rare diseases.

Just yesterday, the shadow Secretary of State held a meeting on special commissioning. Five speakers introduced the issues. The gentleman who spoke on cystic fibrosis said that drugs are available only in certain parts of the United Kingdom. He is worried that we are setting an imbalance, which I have taken up with my colleague back home, Edwin Poots, the Minister of Health, Social Services and Public Safety, to ensure that cystic fibrosis drugs are available to sufferers when they need them not only in England, but in Northern Ireland, Scotland and Wales.

The panel hosted by the shadow Secretary of State outlined the need for drugs allocation. There was a guy representing HIV patients, and 100,000 people in the United Kingdom are receiving HIV drugs to prolong their life. The man who spoke yesterday has lived for 20 years with the drugs that are available, but are those drugs available across the whole United Kingdom?

[Geoffrey Clifton-Brown]

I am extremely grateful to the hon. Gentleman for making those extremely good points. The point he makes about cystic fibrosis crystallises the health service’s dilemma. A small drug company came to me the other day, and told me that it has developed an absolute cure for a certain type of cystic fibrosis if it is caught very early in life. The problem is that the drug will have to be administered for life, and the life cost of the drug for the very small number of people whom the drug will absolutely cure, and whose quality of life it will improve, is £180,000. That is why his remarks on the need to drive down the cost of developing drugs in this country are so important.

[Jim Shannon]

I thank the hon. Gentleman for his constructive intervention. I take his comments on board, and I believe the Minister has a willing ear, too.

[Geoffrey Clifton-Brown]

My hon. Friend the Minister reminds me sotto voce that I was corresponding with her, and I am extremely pleased to say that she has approved the drug I mentioned. So that small number of people will now have an absolute cure.

[Jim Shannon]

If this goes on much longer, I would want the Minister to reply to every Westminster Hall debate, because we have asked for two things and got them both, which is good news.

I will now illustrate the need for drugs for three categories of people. The first category is those with dementia. There has been debate in the House and in the papers over the past week on dementia treatment. In Northern Ireland, we do not have the highest diagnosis rate for dementia in the United Kingdom, but at 63% the diagnosis rate is high. The support services are perhaps not as equal to that as they should be, which we will take up with the Minister to see how we can improve.

The facts are that some 370,000 people have not yet been diagnosed for dementia treatment—first it is diagnosis, and then it is drugs—so there is a combination of how the health system works best. People are given drugs including Aricept, which reduces symptoms and slows progression. The drugs might not always cure the ailment or disease, but they certainly can improve life and make it a wee bit more amenable.

The second category is cancer, and there will not be a family in the whole country that has not been touched in some way by cancer. The Government have set up what they refer to as a “fast track” for cancer patients. There is some indication that the fast track is perhaps not working in the way that it should, but the Government have a £750 million cancer strategy, which plays a key role. As with dementia, the strategy is diagnosis, early intervention and prevention through all the surgeries and clinics across the United Kingdom.

The third category is breast cancer. A new breast cancer drug has had some coverage in the press over the past few weeks. The Minister has been tremendous in her response to our points, and perhaps she could give us some indication of how that drug will be made available to those with breast cancer. The drug has the potential to prolong life. The papers have said that, for some people, the drug can prolong life for 20 years. Such drugs must be available if that is the case. I am keen to hear how that will go.

It is long past time to take active steps to ensure that terminally ill patients or patients with life-threatening conditions are not simply given a form of end-of-life care—it has to be more than that—but are treated for their conditions. New drugs and medications should be actively sought, instead of accepting a diagnosis of illness as a death sentence.

The hon. Member for The Cotswolds mentioned hospice care. We are fortunate to have so many organisations, and if I name some, I will leave some out, so I am not going to name any. They all do tremendous work. The hospice care those organisations deliver to the person who is dying or recuperating and the help they give to families is tremendous. We owe them a lot.

I support the hon. Gentleman in this debate, and I am disappointed there are not more people here, because it is a debate that affects us all. Our constituents would be keen to ensure that we are involved in this debate.

We have been fortunate this morning to have very positive responses from the Minister, and I look for more. What steps are this Government, and our Government in Northern Ireland, taking to ensure that another five years are not lost and that we can make a change to bring hope, instead of despair, to those who refuse to accept a one-size-fits-all diagnosis and who wish to have access to the best drugs available at a price we can afford and that delivers more treatment and care for everyone?

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[The Parliamentary Under-Secretary of State for Health (Anna Soubry)]

It is a pleasure, Mr Caton, to serve under your chairmanship. I congratulate my hon. Friend the Member for The Cotswolds (Geoffrey Clifton-Brown) on securing this debate on a subject of which he clearly has considerable knowledge. I thank other hon. Members who have spoken, and pay tribute to the work done by Empower: Access to Medicine, particularly that of Mr Les Halpin, who has been spoken about in glowing terms. I add my good wishes to him to those of my hon. Friends the Members for The Cotswolds and for Southport (John Pugh)—the latter is giving me a thumbs-up, as I remembered the correct name of his constituency. A great failing of mine is not to remember it. I hope that Mr Halpin is able to watch this debate, and I know that he and many others will want to read it.

If I may say so, the debate is a good example of Parliament at its absolute best. Yet again, there is a story in one of the papers criticising Members of Parliament for expenses properly incurred. If only the press, instead of printing another knocking story, would come along and listen to debates such as this when important issues are put into the public domain with care and considerable knowledge. As is often the case in such debates in Westminster Hall, there has been an outbreak of political unity. Political parties play no part in this issue, and Members properly ask the Government tough questions. I pay tribute again to my hon. Friend the Member for The Cotswolds because he is a pleasant thorn in the Government’s side, and properly so. He has raised and is championing an issue that a constituent brought to his attention, and is holding the Government to account.

I fear—well, I know—that I cannot answer all the questions that my hon. Friend and the hon. Member for Copeland (Mr Reed) have asked and, as is the usual rule, if I cannot do so, my excellent officials will provide written responses. The matter is not in my portfolio—I am not making excuses—so I am not particularly familiar with it, and I am grateful for the excellent briefing that has been provided by my officials. Perhaps I will be forgiven for reading out a large part of my speech, which I do not normally do because I like to look as though I understand everything I am speaking about, but the subject is important and technical.

I would like to take credit for the approval of Kalydeco, a drug for cystic fibrosis users, but it was the National Institute for Health and Clinical Excellence that gave approval for it to be prescribed. The only reason I know anything about it is because one of my constituents wrote to me. A cystic fibrosis campaigning group has quite properly been contacting Members of Parliament, urging them to make all the representations that they can about the benefits of the drug. A very small number of people will benefit, because it relates to those who have cystic fibrosis because of a particular genetic disorder, but it will undoubtedly revolutionise their lives. I was certainly pleased to see that it will now be available for prescription.

The development of new medicines is a long and expensive process, as we all agree. The Association of the British Pharmaceutical Industry estimates that only one in 5,000 researched new compounds receive regulatory authority approval, taking 10 to 12 years on average. That is the scale of the research and the difficulties, in many respects.

The life sciences industry is undergoing rapid change. The time and cost involved in developing new medicines is rising, and the old “big pharma” model of having thousands of highly paid researchers working on a pipeline of blockbuster drugs is declining. A new model of collaboration, about the outsourcing of research and early clinical trials on patients, has emerged. Many patients with serious or life-threatening illnesses, who understandably expect that they should be able to access the latest and most effective treatments, feel that regulatory procedures can hamper access.

Turning to life sciences strategy, this country has a strong history of drug discovery and development, and improving access to medicines has long been a Government priority. The “Strategy for UK Life Sciences” was launched in December 2011. Recognising the issues facing the life sciences, the 10-year strategy includes measures to support innovation and early-stage development. My right hon. Friend the Prime Minister published a progress report and refresh of the strategy only last month.

My hon. Friend talked about adaptive licensing, as did other hon. Members. I would like to set out the arrangements that we are putting in place for an adaptive licensing pilot programme, with the objective of advancing and maximising the potential of existing flexibilities in the drug licensing processes to improve public health and stimulate innovative drug development.

The Medicines and Healthcare products Regulatory Agency—I shall refer to it as the MHRA, as opposed to its otherwise very long name—has convened an expert group on innovation in the regulation of health care and agreed to a tripartite programme to take that work forward. It includes work at EU level on how the existing flexibilities in EU regulation can be used to bring forward innovative products; work at national level exploring options to help companies maximise the potential of existing drug licensing processes; and work at arm’s length from the MHRA and Government. The co-ordination of some other activities required for the pilot will be undertaken by the Centre for the Advancement of Sustainable Medical Innovation, including the exploration of suitable candidate products. However, pharmaceutical companies must come forward and nominate candidates for adaptive licensing.

Last year, we consulted on an early access scheme to make certain new and promising medicines available to patients in the UK before they are formally licensed. The MHRA is currently assessing the consultation responses. If introduced, the early access scheme would be designed for promising new medicines that will treat, diagnose or prevent life-threatening, chronic or seriously debilitating conditions without licensed treatment options. It would provide a scientific opinion from the MHRA on the benefits and risks of a new medicine about a year before the licensing process was completed. That additional information would assist both clinicians and patients in making treatment decisions in areas of unmet need, such as those described earlier by my hon. Friend. Both programmes are in a very early stage of development, as I think we all appreciate, and we will have more to say on that in the near future.

Turning to stratified medicines and genomics—I cannot pronounce it, but I am sure that Hansard will correct me if I get the word wrong—ongoing work on stratified medicines will improve our understanding of why groups of people with particular diseases respond differently to treatments. That point was very well made by my hon. Friend the Member for Southport. Our initiative to sequence 100,000 whole genomes from NHS patients will provide valuable information for researchers to gather new insights into health and disease and to develop new diagnostic tools and treatments.

Rare diseases are classified as conditions affecting no more than five in 10,000 people in the EU. Patients with rare conditions deserve the same quality, safety and efficacy in medicines as those with more common conditions. Since the pharmaceutical industry has little interest, under normal market conditions, in developing medicines intended for small numbers of patients, the EU offers a range of incentives to encourage the development of what are called “orphan” medicines in order to address the unmet clinical need.

Applications for the designation of orphan medicines are reviewed by the European Medicines Agency’s Committee for Orphan Medicinal Products—in its short form, the COMP. Via the MHRA, the UK takes an active role in the decision-making processes at the COMP, ensuring that applications for orphan drug designation are appropriately recognised and encouraging companies to develop their products further. Taking that one step further, I join the hon. Member for Strangford (Jim Shannon) in paying tribute to the research being undertaken at Queen’s university Belfast, and I know that many other universities throughout the whole United Kingdom are doing research into that sort of medicinal pharmaceutical advancement. They do not have some of the constraints of pharmaceutical companies, or perhaps the desire that some of those companies have to make a profit, so it is often universities that are best placed to do some of that invaluable research and development.

[Jim Shannon]

The work that is done at Queen’s university could not happen without partnership with the pharmaceutical groups, and clearly, they can use the partnerships to their advantage in creating new medicines. Partnerships are what life is very much about. A partnership is how we can work together to make it better, and that is a partnership that can work.

[Anna Soubry]

I am grateful for that intervention and I completely agree. It is great when we see business working with our universities on research. It can be highly productive and undoubtedly mutually beneficial, including to the rest of society, and that collaborative approach is much to be welcomed. It is fair to say that many universities, at first, had a bit of resistance to working with business, seeing it somehow as sullying themselves. However, over time they have recognised the absolute mutual benefit to both and, of course, that includes, should it be successful, a benefit to society.

Progressive Supranuclear Palsy

Jim Shannon Excerpts

Wednesday 23rd January 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this very important matter to Westminster Hall. Does she agree—I suspect that she does—that physio and aids should be made available at an early stage of diagnosis, so that those in the last few years of this debilitating disease have a quality of life and a relationship with their families at a time when they need it most?

[Andrea Leadsom]

The hon. Gentleman makes an extremely good point. He raises issues that I want to come on to in terms of calls to action for the Minister. Sadly, the speed of degeneration of PSP sufferers often means that the need for extra resources quite rapidly increases, so it is important that the right care pathway is put in place.

The association is developing a UK-wide research network to allow researchers to share their knowledge, experience and data from their studies into the condition and to increase the number of people with PSP that individual researchers can have contact with.

In 2011, the association commissioned a UK-wide needs mapping exercise for people with PSP and their carers. The results highlighted that the nature and rapidity of PSP means that the needs of those living with the condition are very specific. For example, the palliative care that would be deemed to be required in the late stages of many conditions or at the end of life may very well be required for someone with PSP for almost half of the time that they live with the condition. The rapid progression of the disease and often early onset of communication and cognitive problems have a huge impact. Advance decision making on end-of-life issues needs to take place much earlier with PSP than with many other conditions.

The ongoing needs of a sufferer are ever-changing, and so is their need to see a range of health and social care professionals who can provide the right care, support and equipment at the right time. It is not easy for the carers of people with PSP who face equally difficult challenges trying to navigate their way through the labyrinth of health and social care services and to keep up with the pace of the disease and the ever-changing needs of those for whom they are caring.

As a charity, the PSP Association is indebted to other organisations such as the Neurological Alliance and Carers UK for championing the needs of carers at every level. Although the work of such organisations is critical, it should not replace the needs of carers also being addressed by the statutory services.

In April this year, we will see the introduction of clinical commissioning groups, which will hold the purse strings for our local health services and will be responsible for commissioning the health and social care services for their local population. We are awaiting the imminent appointment of the national clinical director responsible for championing patient involvement and improvement to neurological services in England. Those reforms of our health and social care services are very much welcomed by the PSP Association, but with a caveat, which is that it is essential that people with PSP, their carers and other people living with similar neurological conditions have a voice locally.

The PSP Association has developed a care pathway guide for PSP that outlines the standards of care and support that sufferers will need from diagnosis onwards. It is intended to inform and educate health commissioners and social care professionals to ensure that people with PSP are made as comfortable as possible. Care must also be co-ordinated, as it is essential that it involves a multidisciplinary approach and a regular assessment of the patient’s ongoing needs. That is not only about commissioning services locally, but about saving the NHS funds used in unnecessary emergency admissions to hospitals.

A recent report by the National Audit Office found that the number of emergency neurological admissions to hospital had doubled since 2005. Between 2004-05 and 2009-10, the number of neurological emergency admissions increased by 32% compared with a 17% increase in general emergency admissions over the same period. As well as putting a significant strain on the NHS, that has a severe impact on the well-being of patients and their families. The PSP Association is proactive in helping to predict the care needs of patients in the future. That is vital in reducing emergency hospital admissions with increased awareness of PSP.

As MPs representing our constituents, we need to support neurological charities such as the PSP Association and ensure that people suffering from neurological conditions are fully understood and considered in the proposals for health and social care reform and in the commissioning of services locally and nationally. Access to timely, co-ordinated care and improved integration across health and social care services should be seen as a priority, to enable quality of life for people with PSP and those who care for them.

I should be grateful to my hon. Friend the Minister if he responded on four key points. First, how are people with PSP and other rare neurological conditions being considered in the proposals for health and social care reforms? Secondly, what support is available not only to the individual, but to the carer, especially as the needs of PSP sufferers are quite specific in terms of palliative care? Thirdly, what education and training is given to health and social care professionals, so that they are aware of the specific condition and can respond to the needs of sufferers and their carers? Finally, what can be done to ensure that more research into PSP is carried out, so that the diagnosis is quicker and more accurate?

I am grateful to the Minister for being here today. I look forward to his response and, I hope, the answers to some of those questions.

Dementia Services (Gloucestershire)

Jim Shannon Excerpts

Tuesday 22nd January 2013 Westminster Hall

[Richard Graham (Gloucester) (Con)]

In the dementia debate in the House a fortnight ago, sadly I was tail-end Charlie and time prevented me from contributing a Gloucestershire perspective, so I am very grateful for this opportunity to put that right. I am also very grateful to the Minister for coming to Westminster Hall this afternoon.

Dementia can be an emotional topic. In that earlier debate, many Members—mostly female Members—from all parties in the House talked about the very human side to the disease. It was a reminder that we are no more and no less than a reflection of those we serve; a mirror of the human sadness and strength that are part of the disease of dementia. Perhaps it is not given to men to be as open or as eloquent as women in discussing our experience of family suffering. However, I will embarrass my father briefly, for he looked after my mother at home through many years of dementia. And after my mother’s death, when I said that I could not have done what he had done, my father replied quietly, “You never know what you can do until you have to.” It falls to our generation to “have to” do something about dementia, before we too—one in four of us, including one in four of us in Westminster Hall today—are overtaken by this disease.

In Gloucestershire—an ageing shire—the need is even more pressing. So there are three areas that I would be grateful to hear my hon. Friend the Minister’s views about in this brief debate, and two on which I would like to share our practice in Gloucestershire. Then I will finish by issuing an invitation.

The first area is research. It is good that Government research expenditure has doubled, and that the Aricept brand of new drug can delay the speed at which the disease spreads. However, although that is valuable—not least for giving families a chance to plan—Aricept may not work for much more than a year. Furthermore, although the Government have recently invested £22 million in research into 21 new products, can my hon. Friend the Minister confirm that it may be years before we know if any of them are successful? Since the goal of a cure is such a precious one—way beyond even the estimated heavy financial cost of treating sufferers, which is about £19 billion a year—can he also say if any drug development is close to the stage where the NHS could really financially back its development? On this issue, surely everyone would love to see science and Government working together to back a winner.

[Jim Shannon (Strangford) (DUP)]

I will intervene, if for no other reason than to give the hon. Gentleman a chance to catch his breath.

In Northern Ireland, dementia diagnosis is at 63%, which is well above other parts of the UK. The support services are not as high; in other parts of the UK, support services are much higher than they are in Northern Ireland. Does the hon. Gentleman agree that it is time there should be a UK strategy that takes all the diagnosis and support services together, and that develops a strategy not only for Gloucestershire but for Northern Ireland and the rest of the UK?

--- Later in debate ---

[The Minister of State, Department of Health (Norman Lamb)]

It is a pleasure to serve under your chairmanship, Mr Robertson.

I congratulate my hon. Friend the Member for Gloucester (Richard Graham) on securing the debate and on speaking about his family’s experience—about his mother’s experience of having dementia, and about the role his father played caring for her and the strength that he gained when the moment arose to cope and get through it. My hon. Friend’s speech was moving, if somewhat breathless at the start—it was excellent to see him arriving in the Chamber just in time.

My hon. Friend is committed to ensuring that his constituents have access to high-quality care whenever and wherever they need it. He has demonstrated his commitment through his work as a member of the all-party group on dementia, which does really good work to raise awareness of the condition in Parliament and beyond.

We know that some 800,000 people in the UK have dementia, and that number is expected to double over the next 30 years. The consequences of that growth will be substantial, so we must recognise the scale of the challenge that we face. The Government are committed to meeting that significant challenge by providing high-quality care for people with dementia combined, crucially, with strong support for carers.

My hon. Friend talked about the role of carers, and we often have to stop and remember the impact on a loved one of someone getting dementia and then having that loss of recognition. We must understand how distressing it can be for someone to cope with that, and sometimes with changing and challenging behaviour, when they may have been married for a long time. We owe an enormous debt of gratitude to the army of carers who continue to give their care, love and support, sometimes under difficult circumstances. We will transform dementia services, achieve better awareness of the condition, and offer high-quality treatment at every stage and in every setting.

I will not go over much of the ground that I covered in last week’s debate because I know that my hon. Friend is well versed in many of the things we have achieved nationally. I should recognise the fact that some good work started under the previous Government, who produced one of the first dementia strategies in the world. The work that we are doing means that we are one of the leading countries on this but, as my hon. Friend said, we must recognise that there is much more to do.

My hon. Friend will be conscious of the dementia challenge that the Prime Minister announced last March, but an awful lot has happened since then. For example, we have set aside £54 million for the NHS to support dementia diagnosis in hospitals. We have asked local areas, through the NHS mandate, to set ambitious targets for improved dementia diagnosis over the next two years. Each area must understand its position on undiagnosed cases and set about dealing with the gap.

We have set aside a further £50 million to make health and care environments more dementia-friendly. We have launched a national advertising campaign to raise awareness, to reduce the stigma attached to dementia and to encourage people to contact their GP if they experience symptoms of dementia. Such contact often involves having that first, difficult conversation with a loved one about the need to see their GP to explore whether there might be dementia.

[Jim Shannon]

Does the Minister feel that lessons could be learned from the other regions of the United Kingdom, such as Northern Ireland, where a clear dementia care plan and strategy are in place? If the lessons learned there are beneficial for Gloucestershire and other parts of the United Kingdom, why should we not exchange information?

[Norman Lamb]

I think that the hon. Gentleman said in his earlier intervention that the diagnosis rate is quite good in Northern Ireland. I applaud the work that is done there, but the support services might not be as good as in some parts of England, Wales and Scotland. We are learning about these things together, and there must be close collaboration between England, Northern Ireland, Wales and Scotland. Scotland has done good work to achieve high diagnosis rates. It has also introduced the concept of dementia advisers, which my hon. Friend the Member for Gloucester talked about in relation to his county. We need to be willing to learn from anywhere and, critically, not to reinvent the wheel, so I am absolutely up for collaboration with colleagues in Northern Ireland. Just a week ago, the Secretary of State announced a year of dementia awareness to improve understanding of the condition and diagnosis rates nationally.

Let me deal with research. My hon. Friend the Member for Gloucester said that the Government are doubling the amount we spend on research, although it must be said that that is coming from quite a low base, compared with other conditions. One of the difficulties is that we cannot just make a massive increase to the amount that we spend, because building the research community’s capacity to do the work has to happen hand in hand with any increase.

There were several things I was unable to cover in detail during the recent debate granted by Backbench Business Committee because we ran out of time—my hon. Friend was a victim of that. One of them was research, on which we have genuine cause for optimism. A lot of the media narrative has been about high-profile failures of research, but there is positive and encouraging news out there.

Before I give some examples of that, however, I should mention one thing. My hon. Friend talked about the importance of the scientific community and the Government collaborating closely to meet the challenge we face. Last autumn, I spoke at a conference that brought scientists from not just the UK, but around the world, together with the Government and interest groups, such as charities that campaign on this issue. Such a useful gathering is a way of bringing the best brains to bear on this subject, so that collaborative work must continue.

On 21 December, the Government made £22 million available to 21 pioneering research projects to boost dementia diagnosis rates and to trial groundbreaking treatments. The funding was designed to cover all areas of scientific activity that are relevant to dementia across the fields of care, cause and cure, including prevention. For example, we can do a lot to prevent the condition of vascular dementia from ever starting, so if prevention is possible, we must be much smarter. We have also provided £36 million for a new National Institute for Health Research dementia research collaboration to work on better treatments and care for, and understanding of, the condition, as well as £9.6 million to expand the UK Biobank. Last year there were potentially interesting developments in treating early-stage dementia, particularly in Alzheimer’s disease.

As drug companies continue to invest in research, there is now a real prospect of a treatment within the next decade—that seems to be the time frame we are dealing with—that could have an impact on helping to slow or prevent the disorder, if it is caught early enough. For instance, there have been key recent developments from Eli Lilly, which is conducting an additional phase 3 study of a new drug for patients with mild Alzheimer’s disease. I have also heard about promising plans to expand the testing of a drug for patients with pre-dementia.

My hon. Friend rightly emphasised the importance of sharing best practice, of avoiding reinventing the wheel and of encouraging innovation, which is vital for improving dementia care. I am delighted that Gloucestershire benefited from the additional funding of £10 million from NHS South West. It is by learning from the innovative projects that he describes that we will find out what works and how we can improve services.

My hon. Friend asked me to highlight examples of best practice of people taking the lead on dementia. One involves the fire and rescue service, which has made a pledge to take action to increase the safety of people with dementia. That is a critical area, because someone living with dementia can be at risk, and the fire and rescue service can do a lot to help them to remain safe. The service has made a commitment to raising awareness among staff. Already 28 services have signed up, and I applaud them for that work. In addition, Tesco has made a commitment to increase dementia awareness and understanding among its staff and worked with the Alzheimer’s Society to produce a DVD to achieve that. The moment when a customer gets confused about change or forgets their PIN is the one when a caring and understanding approach from the checkout operator who is coping with them is particularly important. It is encouraging that companies such as Tesco are prepared to do such work.

When my hon. Friend mentioned the demographics in his constituency, that rang true for me, because my constituency, similarly, is rural with an elderly population. I am pleased that the diagnosis rate in Gloucester has risen from 40% to more than 45% in the past year but, as in many places, there is still massive room for improvement to match the best performing areas, such as Islington, where the diagnosis rate is 75%. There is an enormous gap between the best and the worst, and a long way to go. We have developed an analytical tool to support the NHS to achieve an increase in local diagnosis rates, and we are working with the Royal College of Psychiatrists to assure and improve the quality of memory services when the actual diagnosis takes place.

I join my hon. Friend in paying tribute to some of the excellent work in his area, which is in many ways mirrored by that of the Norfolk and Suffolk Dementia Alliance, which is led by an inspiring guy called Willie Cruickshank. He demonstrates the difference that can be made by bringing all parts of the system together. In his area, there is now a comprehensive, multidisciplinary memory assessment service that provides support to primary care and outreach to communities. We must ensure that we bring down waiting times, which are far too long in some areas.

Community dementia nurses and advisers are working closely with GPs throughout the country. Last week, I met a group called Uniting Carers, which is part of Dementia UK, which talked about the fantastic work of Admiral nurses in many parts of the country.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 15th January 2013 Commons Chamber

[Mr Hunt]

I congratulate the right hon. Gentleman on his campaigning work for people with diabetes, and I am aware that there are 24,000 premature deaths every year because we are not as good as we need to be at tackling the disease. It is shocking that only half those with diabetes are getting the full set of nine checks that everyone with diabetes should be getting every year, and when we publish the cardiovascular disease outcomes strategy—which I hope will be in spring—I hope we will address some of his concerns about how we can do a better job for diabetes sufferers.

[Jim Shannon (Strangford) (DUP)]

Deep vein thrombosis is the leading direct cause of maternal deaths across the United Kingdom. Will the Minister consider interaction with the regional assemblies, including the Northern Ireland Assembly, to agree a UK strategy to address that issue?

[Mr Hunt]

I am happy to look into the issue of DVT and it should be included in our CVD outcomes strategy. Just as we will look at diabetes, I will ensure that we also consider how we might be able to help on DVT.

Diabetes

Jim Shannon Excerpts

Wednesday 9th January 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

First, I thank the hon. Member for Torbay (Mr Sanders) for bringing this issue to the House. Secondly, I declare an interest, as I am a type 2 diabetic and have been for four years. It has given me a knowledge of, and an interest in, the issue, although not a total knowledge—far from it. It has also made me more aware when constituents come to me with issues relating to diabetes and has given me an interest in those issues.

The disease has completely changed my life, as it would, because it is type 2. Diabetes is a major issue in every constituency. As someone who enjoyed the sweet trolley more than anyone else—to use Northern Ireland terminology, when there was a bun-worry going on, I was at the front of the queue—the sweet stuff was something that I indulged in regularly. Along with my stress levels, that has meant that I am a diabetic today.

The statistics have been mentioned, but they bear repeating, due to the seriousness of the UK’s problem, which is etched in everyone’s minds. The UK has the fifth highest rate in the world of children with type 1 diabetes. In Northern Ireland, we have 1,040 children with type 1 diabetes, some of whom are born with the condition. I want to give a Northern Ireland perspective, but I will bring in the UK strategy, because diabetes affects the whole UK, and that is why it is important. Some 24.5 children in every 100,000 aged 14 and under are diagnosed with the condition every year in the UK. We had a reception where we met some of those young people, and if we needed a focus, the focus was there that day for those of us who attended. I think that most of the people in the Chamber were there.

The UK’s rate is about twice as high as that in Spain, where it is 13 children in every 100,000, and in France, where it is 12.2 children in every 100,000. The league table covers only the 88 countries where the incidence of type 1 diabetes is recorded. There are 1,040 children under the age of 17 with type 1 diabetes in Northern Ireland, and almost one in four of them experienced diabetic ketoacidosis before a diagnosis was made.

Diabetic ketoacidosis can develop quickly. It occurs when a severe lack of insulin upsets the body’s normal chemical balance and causes it to produce poisonous chemicals known as ketones. If undetected, the ketones can result in serious illness, coma and even death. The diabetes itself is not the killer; it is the offshoots from it, the effects on the heart, circulation, blood pressure and sight, and the possibility of strokes and amputations.

The number of people living with type 1 and type 2 diabetes has increased by 33% in Northern Ireland. In my Strangford constituency, the number has gone up by 30%, with 800 people—I am one of them, by the way—becoming diabetic in the past seven years. That compares to 25% in England, 20% in Wales and 18% in Scotland. In our small part of the United Kingdom, the total number of adults—aged 17 and over and registered with GPs—with diabetes is 75,837, and a further 1,040 young people under the age of 17 have type 1. There has been a significant rise in that number also, with the prevalence in Northern Ireland now at more than 4%. An estimated 10,000 people in Northern Ireland have diabetes and do not know that they do. They have a ticking time bomb in their bodies; they wonder why they are not well, and the cause is diabetes.

[Mr Gregory Campbell (East Londonderry) (DUP)]

My hon. Friend is talking about the different prevalence of diabetes throughout the UK. Does he agree that best practice regarding early detection and the promotion of an active lifestyle could be a target for all the devolved regions across the UK and here in England? The Minister would do well to respond in relation to Ministers in the devolved regions taking on such best practice to combat diabetes.

[Jim Shannon]

Yes, I agree. When people make interventions, I always wonder whether they have read my script—preventive medication is the very next issue on it.

In my doctors surgery in Kircubbin and, indeed, across Northern Ireland preventive measures are in place. There are diabetic surgeries, and the matter is taken seriously. The UK strategy that we have had for the whole of the United Kingdom of Great Britain and Northern Ireland and that will come to a conclusion this calendar year has made significant progress towards reducing the potential numbers, but diabetes has increased over the same period. There are some 100 diabetics in my doctors surgery in Kircubbin.

[Rehman Chishti]

The hon. Gentleman talks about the United Kingdom strategy. Does he accept that certain people from different ethnic backgrounds are more likely to get diabetes? For example, according to the Wellcome Trust, 50% of people from south Asian and Afro-Caribbean backgrounds would have diabetes by the age of 80. Any UK strategy would therefore have to take ethnic composition into account, because such people are affected differently.

[Jim Shannon]

That is an excellent point, and I am sure that the Minister will address it in her response. There are groups in the whole of the United Kingdom in which diabetes is more prevalent, and we need to look at those target areas.

There are 3.7 million people in the UK diagnosed with type 2 diabetes. I was diagnosed four years ago. With me, it was down to bad eating habits, stress and the fact that there were no set hours to my job. I ate whatever was quickest, and that was Chinese, usually with two bottles of coke, five nights a week. That was why I was 17 stone. I am now down to 14 and a half stone because I no longer do that. The issue is eating and living styles—eating what is quickest rather than what is best.

Edwin Poots, the Minister at the Department of Health, Social Services and Public Safety in Northern Ireland, is very aware of the ticking time bomb that is diabetes. I am aware of the key initiatives in operation in Northern Ireland, and I know that the Minister here today has had discussions with the Minister in Northern Ireland. They are doing a great job, including setting aside funding to employ additional diabetic staff—specialists, nurses, dieticians and podiatrists. That is providing all the help that a diabetic needs, but it is still not enough.

We need a concerted effort across the United Kingdom, through the media, and even perhaps through the TV soaps. I am not a soap watcher. I could not tell anyone what happens in “Emmerdale” or “Coronation Street”, but my wife could. She knows everyone in them—what they are doing this week and what will happen to them next week. Could we not perhaps use the soaps to make people more aware of the issue? I understand that plenty of issues are brought up in them regularly, so perhaps we should try this one.

It is great that our children are taught about diabetes in school. It is surprising what a five or 10-year-old knows about food that their mum and dad do not. Who is educating the mums and dads at home who are making the dinner and buying the shopping? The hon. Member for Blaenau Gwent (Nick Smith) made a point about how the food coming into the house is controlled by the parents. Diabetes UK Northern Ireland is taking part in an organisation-wide campaign entitled “Putting Feet First” to raise awareness of amputations among people living with diabetes and to work to prevent unnecessary amputations.

The Minister might want to comment on the new medications that are available. In the press this week, there was talk about a new diabetic medication in tablet form that could replace—not totally but partially—type 1 injections. The figure used was a cost of £35 per month. It would be good if we could get some feedback about whether the new medications will be available across the United Kingdom and whether everyone will be able to take advantage of them.

In Northern Ireland last year, 199 diabetes-related amputations took place, and the “Putting Feet First” campaign highlights that an estimated 80% of lower- limb amputations are preventable. There must be a UK strategy to reduce diabetes-related amputations by 50% over the next five years. What can we put in place in this Chamber to highlight and support the campaign? How can we use our influence to see the number of cases of type 2 diabetes dropping, instead of this steady rise?

The links between type 2 diabetes and obesity are firmly established, and it is clear that, without appropriate intervention, obesity can develop into diabetes over a relatively short time. For instance, the risk of developing type 2 diabetes is about 20 times more likely in obese, compared to lean, people. A newspaper recently stated that academic sources have estimated that the predicted rise in obesity rates over the next 20 years will result in more than 1 million extra cases of type 2 diabetes, and that is really worrying. Can that go unchallenged, when it is within our power, as parliamentarians, to do something about it, at least by putting a strategy in place or by beefing up the ones that we already have? When the current UK-wide strategy ends, it will perhaps be time to do something more.

I live the life, as do many others, of testing my blood every day, of feeling unwell when my blood sugar is out of control and of worrying that the next visit to the doctor will bring worse news, which can be the case if we do not discipline ourselves and ensure that we do things right. That is not the life that I want to have, or the life that I want my family, friends or constituents to have. The way to take on the issue is to continue with the UK-wide strategy, with dedicated funding and with all the regions working together, which will save money in the long run and, more importantly, improve the quality of lives across the United Kingdom.

I urge the Minister to take the initiative. I believe that she will and that her response will be very positive, because she understands the issues. I urge her to work with the devolved bodies, in coming together to disarm the ticking time bomb of diabetes—the cost of which some people indicate will be £10 billion—before it explodes. Type 2 diabetes is preventable, and we must do all that we can to prevent it. Education, with attention paid by everyone in this Parliament and the regional assemblies, is the way to do that.

[John Pugh]

rose—

--- Later in debate ---

[Anna Soubry]

I am concerned about it. It is unacceptable. I have already held a meeting with my officials and they are making further inquiries. I discussed with Mr Dawson what was happening locally in CCGs, which is where this will make a difference, when we see the power of our doctors and other health professionals to commission services, and the power and influence that patients and sufferers of diabetes will have. I am told that NHS Diabetes has now identified a diabetic lead in every CCG. There is an opportunity, through the reforms, to ensure that we now deliver locally as we should. All hon. Members who have contributed to this debate have identified a failure in respect of good outcomes and good practice throughout the NHS, right through to local level. That needs to be, and is being, addressed as a matter of urgency.

I have been alerted to problems with glucose meters and pumps—various new advances in technology. Some of this excites me. However, I am still concerned if there is not the availability that there should be, right across the NHS, notably for all sufferers of diabetes 1.

[Jim Shannon]

It is not just about the provision of the insulin pumps; it is also about training. There are two facets to that.

[Anna Soubry]

Indeed. I was going to end this part of my speech by saying that my constituent, Mr Dawson, paid tribute to what he described as his brilliant diabetic nurse at the Queen’s medical centre in Nottingham. He highlighted, as the hon. Gentleman has done, that it is all well and good having wonderful, great technology, but if people have access to it they need, critically, the support to be able to use it themselves. We must ensure that they have the highest-quality support, not just from their GPs, but from diabetic nurses and others who are trained and specialise in this condition.

Diabetes is common and is increasing, as hon. Members have mentioned. It is estimated that, by 2025, 4 million people will have diabetes.

Antibiotics (Intensive Farms)

Jim Shannon Excerpts

Wednesday 9th January 2013 Westminster Hall

[Zac Goldsmith]

I thank the right hon. Gentleman for his intervention. I suspect that that is part of the problem, but as I will come to later, I think it is also the case that the agribusiness sector in this country has had a disproportionate impact on policy. That is a point that I hope to impress during the debate.

As I was saying, there has been a near clean sweep of Ministers at both Departments, so this debate provides an opportunity to clarify Government policy. The Government are right to insist on better infection control in hospitals and changes in the way that antibiotics are prescribed by doctors. However, other than the brief answer that I quoted from the former Secretary of State, there has been virtually nothing from the Government that could in any way encourage vets and farmers to be similarly prudent. Not surprisingly, therefore, there has been little progress; on the contrary, analysis by the Soil Association of the Government’s statistics indicates that the overall use of antibiotics per animal on UK farms increased by 18% between 2000 and 2010, while the farm use of third and fourth-generation cephalosporins—drugs described by the Health Protection Agency as hospital workhorses—increased by over 500%.

Furthermore, recently published data from the Veterinary Medicines Directorate show that sales of fluoroquinolone antibiotics for use in veterinary medicine over the past two years have been 70% higher than they were in 2000. It is worth noting that when fluoroquinolones were first licensed for use in poultry in the UK in 1993, there was no registered antibiotic-resistant campylobacter in people who had not been treated with the antibiotics, but by 2007, almost half—46%—the campylobacter food poisoning cases caused by the most common strain were resistant. It is worth noting also that in 2008, the European Food Safety Authority said:

“A major source of human exposure to fluoroquinolone resistance via food appears to be poultry”.

Clearly, antimicrobials should be used to treat sick animals, and I do not think anyone would argue against that.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing the debate. Does he feel that the use by the farming sectors—whether pig, poultry or beef—of antibiotics is unnecessary, because there is a blanket use, rather than reacting to disease? Does he feel that that has a direct impact on us as human beings? Many people come to me and say that the antibiotics are not working, and they are getting three doses from the doctor. Is that feeding off what is happening?

[Zac Goldsmith]

Again, I absolutely agree with the hon. Gentleman’s point, and I thank him for making it. I will come to that in more detail shortly.

There is no argument against treating sick animals with antimicrobials but, surely, not the most modern and medically important ones, especially when other antibiotics, which are not as critically important in human medicine, are available. I recognise that this topic does not lend itself easily to tabloid news, but there is a real, worrying chance that that could change. By overusing antibiotics, we risk ruining for future generations one of the great discoveries of our species. In short, we risk entering the post-antibiotics age.

My hon. Friend the Minister will know that some antibiotics have already been lost to resistance: for example, penicillin for staphylococcal wound infections, ampicillin for infections of the urinary tract and ciprofloxacin for treating gonorrhoea. Many more are under threat, and new antibiotics are increasingly hard to find and license. We are now using our reserve antibiotics, and worryingly, seeing the spread of resistance to them as well. For example, rises in resistance, such as those seen for E. coli, force doctors to use carbapenems, which were previously the reserve antibiotics for use when other treatments had completely failed. However, we are now using carbapenems much more and seeing the spread of resistance to them as well.

University of Cambridge researchers revealed the first cases in UK livestock of a new strain of the multi-resistant superbug MRSA. It is called ST398, and it has become endemic in European and north American pig populations and has spread to poultry and cattle. It is significant because, unlike most strains of staphylococcus aureus found in farm animals, it is readily able to transfer to humans. If not checked, that is likely to lead to rising community-acquired MRSA, just at the time that hospital-acquired MRSA is falling, due to sterling efforts by health professionals.

Liverpool Care Pathway

Jim Shannon Excerpts

Tuesday 8th January 2013 Westminster Hall

[Sir Tony Baldry (Banbury) (Con)]

When I first entered the House of Commons some 30 years ago, I became the founder secretary of the all-party hospice support group, and Jack Ashley was the founder chairman. I am glad to say that that group has now become the all-party parliamentary group on hospice and palliative care. During those 30 years, an enormous amount of work has been done on enhancing palliative care in hospitals. We are fortunate in this country in having an outstanding hospice movement. Part of the purpose of the Liverpool care pathway was to ensure that the good practice of palliative care, which had been developed in hospices, could be spread to other health care settings, such as hospitals and care homes. Extending it to people’s own homes was also important because if people are asked where they would like to die, most say at home. The reality for each one of us is that we will die.

The Liverpool care pathway requires staff to ensure that all decisions to continue or to stop treatment are taken in the best interests of each patient, and emphasises that patients should be involved in decisions about their care and that carers and families should always be included in the decision-making process. An evaluation in 2011 showed that in 94% of cases, there had been such involvement. The idea of documenting conversations, which the hon. Member for West Lancashire (Rosie Cooper) mentioned, is sensible. In our own professional lives, and, indeed, as Members of Parliament, we all know that people, especially family members, do not always take on board news that may be distressing. Often it is quite a shock to be told that a loved one is near to death. Very often, the instinctive reaction is to want to ensure that life can be preserved for as long as possible, but we also have a duty of care to ensure that in people’s last days and hours they die well and painlessly and with as much dignity as possible.

I was very struck by two contributions in the Library briefing. One was a brave article by a specialist registrar who herself is a terminally ill cancer patient. Of the Liverpool care pathway, she said:

“It prompts us to have open discussions with relatives, and, if possible, patients, to stop unnecessary medication, to discontinue futile medical interventions, and to shift our focus of care to symptom-control, comfort and dignity… Most patients on the LCP, in my experience, are too poorly to eat or drink, but where a patient is alert enough to swallow we certainly continue to offer them food and fluids in my hospital. They are not ‘starved to death’. The problem with intravenous fluids is that cannulae need to be inserted to administer them. This is painful, often very difficult and sometimes near impossible in patients who have been in hospital for a number of weeks.”

[Jim Shannon (Strangford) (DUP)]

Although the hon. Gentleman makes a pertinent point, surely the issue must also be about those people who are not convinced about the system and who are suspicious and worried about what they have been told. There are people who have been denied fluids, and also drink and food. Does the hon. Gentleman think that there should be some protection in the system for such families so that they can feel assured that there is care? The point I am trying to make is that this should be about care and not killing, but many of us suspect that there is more emphasis on the killing than on the care.

[Sir Tony Baldry]

Very few of us can have the confidence of Cardinal Basil Hume who, in his book “The Mystery of the Cross”, observed:

“Death is a formidable foe until we learn to make it a friend. Death is to be feared if we do not learn to welcome it. Death is the ultimate absurdity if we do not see it as fulfilment. Death haunts us when viewed as a journey into nothingness rather than a pilgrimage to a place where true happiness is found . . . Death is not the end of the road, but a gateway to a better place.”

Few of us, irrespective of our faith, have that clear courage and confidence, but we all recognise that we will die. There is nothing about 21st century medicine that is going to keep the hon. Gentleman or myself, or any of us, alive for ever. Death, and the process of death, can be extremely painful, and it is our collective duty and responsibility to try to ensure that people die as painlessly as possible and with as much dignity as possible.

I can assure the hon. Gentleman that people do not go into the medical profession to kill. My father became a doctor and my mother a nurse to ensure that they could give people the best quality of care. Although the press have published a number of stories about relatives who have expressed concern about how the local care pathway has been used, there is no systemic evidence to suggest that the policy is being abused. A consensus statement was published last year by several non-governmental organisations and charities, all of which are much respected in this House, supporting the Liverpool care pathway. They include Age UK, the Alzheimer’s Society, the British Heart Foundation, Help the Hospices, Macmillan Cancer Support, Marie Curie Cancer Care, the Royal College of General Practitioners, the Royal College of Nursing, the Multiple Sclerosis Society and the Royal College of Physicians.

[Jim Shannon]

rose—

[Sir Tony Baldry]

No, I will not give way because others want to speak. This is an important issue, but we must ensure that we put it in perspective. If we are not careful, all the work that has been done over the past 30 years by a whole number of organisations, including those that I have just mentioned, to enhance and improve palliative care could be undone. Sadly, people die every day; that is the reality. It is not a failure of the NHS that people die. It is only a failure of the NHS if people do not die well. We need to ensure that all improvements, whether they be to records or to communication with patients and their families, are undertaken, but nothing should deter us from trying to ensure that everyone in this country gets the best possible end of life and the best possible palliative care.

--- Later in debate ---

[Jim Shannon]

I congratulate the hon. Lady on the passionate way in which she has dealt with this issue. Does she agree that it is important that those who work in the Liverpool pathway are highly skilled? If such care is left in the hands of those who are less skilled, there is a possibility that what could be termed voluntary euthanasia will take place. Does she agree that only highly skilled people should be involved in the Liverpool care pathway?

[Fiona Bruce]

I do, and this is where training is so important. Without the proper application of the Liverpool care pathway, death can be hastened, and that is not the intent of the pathway. Occasionally, even with correct application, it can be the unintended consequence—for example, through the use of narcotics to alleviate severe discomfort and facilitate a more peaceful passing.

I wholeheartedly welcome the Minister’s decision to hold an independent public inquiry into the LCP. I have met him, and I thank him for his open-minded, calm and reasoned approach and for the fact that he has had ears to hear concerns about the LCP. Without wishing to prejudge the terms of the inquiry, may I make the following suggestions for it to consider?

First, a number of pressures might subvert the proper implementation of the LCP, and I am grateful to Professor David Albert Jones of Oxford, who is an authority on this topic, for highlighting them. He says they are:

“the subjective character of judgments about how soon someone is going to die…the fact that the LCP may be initiated by people who are not senior clinicians familiar with the individual patient’s case and have not consulted with palliative care physicians… the influence of managerial pressures to reduce bed occupancy …reluctance to face the difficulties of continuing care of certain difficult patients…the euthanasiast outlook of some clinicians…the possibility of doctors or nurses regarding the LCP as a set of ‘tick boxes’…rather than assessing the needs of the patient…Other NHS organizational/staffing procedures or constraints”.

He adds:

“Research shows that care of the dying is poorest in the hospital setting”

in contrast to care in hospices, which I believe we all admire.

I also urge that the inquiry consider the following measures: that no patient should be placed on the LCP unless they are imminently, irreversibly and inevitably dying, which I understand to mean perhaps within 36 hours; no one should be placed on the LCP without its being discussed with a designated relative or carer; every patient placed on the LCP must be continuously monitored and reviewed by a multi-disciplinary team; documentation must be simplified and standardised, so that those implementing the LCP can easily follow the guidelines; training and supervision should be mandatory, as well as standardised and improved; non-clinical priorities in the use of the pathway must be eradicated and every patient must be treated solely according to their needs; payment for such care must be reconsidered; and the communication to relatives should be substantially improved.

I believe that, if it is well used, the LCP can improve standards of end-of-life care, especially in hospitals. It should promote better palliative care and support the kind of good death that we would all wish for ourselves and our loved ones. I sincerely hope that the independent inquiry will be a major step in facilitating that.

NHS Funding

Jim Shannon Excerpts

Wednesday 12th December 2012 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

Thank you, Mr Deputy Speaker. I have no doubt that I will finish in time.

We are well aware of the pressures in every area to implement Government cuts and how difficult it is to do that. Whether we are in government or in opposition, we all have a job to do in sorting out that problem. In my opinion, there is no worse place to carry out cuts than the NHS. Sick people need treatments that are often expensive and doctors are working out treatment plans and thinking about how they can keep to their budget and provide top-class care. There are pressures on the doctors in the system and they are ever mindful of the budget that they have to work to.

Everyone inside and outside the Chamber is aware of the issues and of the value of the NHS. The debate is about how we can do things better. The Opposition tabled the motion and their concerns have been well rehearsed today.

In my constituency—many hon. Members have given similar examples—a young lady had been unwell for 10 years with ulcerative colitis. She was responsive to her treatment of infliximab, and yet the doctor had to take her off it because it was too expensive and other more serious cases needed the treatment. However, once she was off the treatment she worsened, had to go on the sick and received numerous warnings from her workplace about losing her job. Where would the money truly be saved in such a scenario—stay on the treatment, stay in work, or go off the treatment, go off work?

My mother had a saying—I am sure that many hon. Members will be able to relate to this—“Your health is your wealth.” It clearly is and those of us who are in good health are fortunate.

The right hon. Member for Cynon Valley (Ann Clwyd) is no longer in her place, but she made an excellent, compassionate speech. I think that she probably told the story of this debate in the examples she gave. I told her before she left the Chamber how important it was to have those comments on the record.

It must be remembered that in its review of independent NHS trust three-year plans up until 2014-15, Monitor, the NHS’s economic regulator, warned that cuts were unlikely to be matched by any let-up in the number of patients requiring care. There is an emphasis on preventive medicine and how best to use it. I am sure that the Minister will address how we can ensure that people who are getting older do not succumb to the many diseases and other problems. Sometimes, there is nothing gracious about growing old—it is a fact of life.

The Minister will talk about efficiency savings—they can achieve much—but when I consider the great job that the Northern Ireland Minister of Health, who happens to be a colleague of mine, has done on efficiency savings, I wonder whether the further cuts to Northern Ireland’s block grant will be applied to health again over the next few years. How much more can we save through efficiency? There is a limit—a ceiling—to what efficiency savings can do without affecting health. John Appleby, the chief economist of the King’s Fund think-tank, has said that the outlook for hospitals in 2013-14 and 2014-15 is particularly severe, with anticipated cuts of about 1% when the Government’s inflation forecast is 2.5%. That is a clear difference.

Some hospitals plan to partially offset the radical drop in NHS income by expanding their private patient work, aided, as their financial plans say, by moves to restrict NHS funding for certain surgical procedures. This is expected to fuel an increase in patients funding surgery privately. That greatly undermines what the NHS is about—its very thrust—namely care, no matter the condition, provided by national insurance contributions. As has been said, if we introduce a two-tier care system to operations, how long will it take until we find ourselves providing a system similar to America’s private health care system? How ironic it is that the Americans are attempting at this time to a design a system that is in line with our own NHS. Perhaps we can take some lessons from that.

I also want to comment on the problems that arise when we cut NHS funding. The number of MRSA cases in hospitals has increased. That is not through any particular fault of the staff—I am clear about that—but it is a problem that occurs whenever cost-cutting becomes the No. 1 priority for hospitals. We have to be careful.

We have already implemented cost-saving measures, such as carrying out certain treatments as day procedures followed by care at home, which, as well as being cost-effective, makes a lot of people feel more secure. However, it is essential that the patient is at the heart of any decision made and any strategy must incorporate that. There is a fine balance between cutting costs and cutting care. My fear is that the latest cuts, which will filter through to Northern Ireland through the block grant as a matter of course, will tip the balance for many people.

Many people in my office tell me that they were brought up to respect authority and that if a doctor tells them something, they accept their word. I come across other people who challenge their doctors and push them for the experimental treatment that they know is available, although at a cost, or for a referral to the mainland for innovative treatment. It saddens me that the results differ between those two types of people. In my opinion, it puts our health care professionals in the difficult position of choosing who deserves and who does not deserve the nth degree of care.

Recently in this Chamber I questioned the Secretary of State about the shocking use by doctors of so-called death lists—I am very careful about using that terminology—for elderly people, whereby they withhold certain treatments from those who they believe will die anyway. It is a dangerous precedent to set for the NHS when that can and does happen. If one puts oneself in the doctor’s shoes and realises that the Government are putting a great emphasis on cost, one can see that they are almost forcing that choice. That makes it a little more understandable, but no more acceptable.

As an MP, I have come across many constituents who have come to the mainland to have hospital operations and examinations. We are thankful that we are able to do that, but it involves a cost.

I am not the kind of person who believes that money grows on trees. I wish that it did. I have some trees in my garden, but I cannot find any money on them. We could spend, spend, spend, but I know that we must reduce the deficit. In my opinion, there are other ways of doing so, such as adopting the proposals put forward in the debate in May on the NHS and foreign nationals. To give a brief reminder of that debate, an article in The Daily Telegraph stated that official figures suggest that

“more than £40 million is owed to NHS hospitals by foreign patients who were not eligible for free care”.

It stated that a freedom of information request showed that

“the average unpaid debt for the provision of care to foreign nationals was £230,000 in the 35 trusts which responded.”

The article went on to note that the doctors’ trade magazine Pulse claimed:

“If this figure was the same across all 168 English acute trusts, the total debt would be almost £40 million”.

Perhaps in his response the Minister could give some detail about whether that money has been collected, and if not, when it will be.

In that debate, it was suggested that there should be a £1,000 threshold. Has that been implemented yet? Have those who owe the money been chased down? Has the six-month registration period for a GP been altered? In my opinion, by acting on such matters urgently, we can save money without cutting care. Does the Secretary of State agree that such angles must be pursued if we are to stop cutting services and still save money?

Time has got the better of me, so I will end by urging the Government to look at people and not simply at numbers. If everybody does their job more effectively, we can ensure that all people have top-class care, no matter where they live, without having to pay for it. The NHS is truly a jewel in the crown of this country. Many owe their lives to it and many depend upon it. Let us retain it and build upon it to ensure that in the years to come, it will still be the jewel in the crown that all in this nation cherish, love and depend upon.

Hospital Food (Animal Welfare Standards)

Jim Shannon Excerpts

Wednesday 12th December 2012 Westminster Hall

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

I am grateful for the opportunity to discuss this important issue, and I thank you, Mr Turner, for allowing me to open the debate, in which I will call for the introduction of mandatory animal welfare standards for hospital food in England. It is a pleasure to do so under your chairmanship. As many hon. Members know, I am passionate about animal welfare, and I am both a proud member of the Select Committee on Environment, Food and Rural Affairs and the chair of the associate parliamentary group for animal welfare.

It may come as a surprise to many that the food served to patients in NHS hospitals in England need not meet mandatory animal welfare standards. Currently, Government buying standards are mandatory only for central Government buying departments, the Ministry of Defence and prisons. Schools and hospitals, which are excluded from the buying standards, account for 70% of public sector spending on food, meaning that prisoners currently have a guaranteed minimum standard but patients do not.

The welfare standard provided for animals reared for food is undoubtedly important, especially for animals reared for food bought by the taxpayer and served in public institutions such as hospitals. The animal welfare quality of food bought by hospitals in England varies widely, yet patients throughout the country deserve to eat food produced to the same high standards. We need a consistent approach to tackle the situation.

Animal welfare standards for hospital meat, dairy and eggs are subject to a postcode lottery. The programme for Government stated that the coalition Government would promote high standards of farm animal welfare, and it is important that public bodies set an appropriate example by ensuring that their purchasing policies are in line with that objective. Unfortunately, research published by the Campaign for Better Hospital Food and the Royal Society for the Prevention of Cruelty to Animals reveals big regional differences in animal welfare standards for hospital food in England.

The research discovered a number of shocking findings: 71% of eggs bought by hospitals in England are laid by caged hens, and only 39% of eggs bought by hospitals in the south of England are cage-free. Only one in four eggs in the north of England, and only one in every six in the midlands and east of England, are cage-free. We can see how much it varies in the postcode lottery. The report also revealed that 86% of chicken and 80% of pork bought by hospitals is not certified to meet RSPCA welfare standards. The figures paint a sad and regrettable picture of the welfare standards for animals reared to provide food for our hospitals. Chicken, pork and eggs that have not been produced to RSPCA welfare standards are likely to come from animals that have not had a good quality of life. Government attempts to set animal welfare standards using voluntary measures have failed, which is why I am calling for a statutory solution.

Concerns about the quality of hospital food, including its animal welfare standard, are not new. A report by Sustain, the alliance for better food and farming, estimates that in the last 20 years, the Government have spent more than £54 million of taxpayers’ money on issuing guidance to hospitals encouraging them to improve the quality of the food that they serve, including the animal welfare standard of its production, yet the research by the RSPCA and the Campaign for Better Hospital Food shows that the guidance has had a disappointingly weak effect.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing the issue to the House. Although it is important to improve animal welfare standards not only in England and Wales but in Northern Ireland and Scotland, he will be aware of the oft-stated comments about hospital food by patients and people who visit hospitals. Does he feel that improving animal welfare standards will also improve the quality of hospital food? That must be a good step.

[Neil Parish]

The reason why I talk about England is that the food served in hospitals is a devolved matter. However, it is still important for Northern Ireland. I am keen to get good animal welfare standards, and I believe that that will help with the quality of meat and eggs served to patients. The two are linked. I believe that most production in the UK and Northern Ireland meets high standards, and I want to ensure as far as is practical that that is the sort of food served in hospitals not only in Northern Ireland but across England as well.