Mid Staffordshire NHS Foundation Trust

Jim Shannon Excerpts

Tuesday 26th March 2013 Commons Chamber

[Mr Hunt]

I agree with those sentiments strongly. In parallel to this process and these changes, I have asked the NHS Confederation to recommend how we can reduce the bureaucratic burden on hospital front-line staff by a third, precisely because I want to avoid the issues that my hon. Friend mentions. This is about freeing up time for people at the front line, and one way is to have an inspection system in which everyone has confidence. Once there is the confidence that problems will be identified, it becomes much easier, as has happened in the education system, to give more freedom to people on the front line.

[Jim Shannon (Strangford) (DUP)]

I thank the Secretary of State for his statement. The public inquiry has been thorough, with new standards put in place and lessons learned from the NHS in Staffordshire. Health in Northern Ireland is a devolved matter. Will he confirm that the report will be sent to the Northern Ireland Assembly Health Minister, Edwin Poots, so that improvements and guidelines can be improved for everyone in the United Kingdom of Great Britain and Northern Ireland?

[Mr Hunt]

I am happy to do so.

Fetal Anti-convulsant Syndrome

Jim Shannon Excerpts

Tuesday 26th March 2013 Westminster Hall

[Anas Sarwar (Glasgow Central) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Hollobone. I am delighted to have secured this important and topical debate after months of bad luck in the ballot. The House will adjourn for the Easter recess today, and I appreciate the effect of that on the number of participants. As hon. Members have other commitments in their constituencies, the turnout is lower than it would have been had the debate taken place at a more convenient time, so I am grateful to colleagues who have made it here.

Members who watched the recent BBC “Inside Out” programme will recognise the timeliness of this debate, because new expert medical research has highlighted the dangers of anti-convulsant medication to pregnant women and their unborn children. Before we get into the debate, I will provide a bit of background information on fetal anti-convulsant syndrome and the Independent Fetal Anti-Convulsant Trust.

Fetal anti-convulsant syndrome is a medical condition that arises among the children of mothers who suffer from epilepsy and take a type of drug known or used as an anti-convulsant medication to treat their condition during pregnancy. Not all children who are exposed to anti-convulsant drugs are affected. The level of risk is determined by known factors, such as the particular anti-convulsant medication used and the dose taken, as well as other susceptibility factors. Children suffering from fetal anti-convulsant syndrome suffer from a constellation of physical and neuro-developmental deficits, and so have to be diagnosed by a medical specialist.

The Independent Fetal Anti-Convulsant Trust was launched in November 2012 to gather information and provide support and assistance to those affected by the condition. It is run by a small, hard-working team of volunteers, a couple of whom are in the Gallery today. I would like to put on record my thanks to the entire team, and especially to Janet Williams, who has done a fantastic job in providing me and many other hon. Members with so much invaluable information. I would urge anyone who suffers from the condition, or who has a relative or friend with it, to contact the trust.

It is difficult to get an accurate picture of the number of people affected by the condition; in response to a parliamentary question to the Department of Health on the number of women receiving anti-epileptic drugs through the NHS, I was unfortunately told that the information was not available centrally. Things are made even more difficult by the fact that many children with the condition will not have been diagnosed with the syndrome because they do not have a major congenital malformation, such as a heart defect or spina bifida. Those children are less likely to be referred to a clinical geneticist.

Sodium valproate is the drug that reportedly carries the largest risk of causing fetal anti-convulsant syndrome. According to prescription records, there were more than 21,500 women taking sodium valproate in 2010 in England and Wales alone. A range of scientific studies conducted over the past couple of decades have demonstrated that some 10% of children exposed to sodium valproate will be born with a major congenital malformation. Their IQ is likely to be lower than it otherwise would have been, with 29% requiring additional educational support and 6% being diagnosed with significant social communication difficulties, such as autism.

More broadly, there have been numerous case reports in medical journals of children born with one or more major birth defects when the mother had been taking anti-convulsant drugs. Those children include not only those born with spina bifida and heart defects, but those born with cleft palates, limb malformations, neuro-developmental delays and learning difficulties. There are therefore likely to be tens of thousands of children affected by the condition.

[Jim Shannon (Strangford) (DUP)]

The hon. Gentleman is making his case very well. Fetal anti-convulsant syndrome is an unknown quantity that affects children. I am aware of a family in my constituency with children who suffer from it. The hon. Gentleman has not yet mentioned that children may also suffer from autism as a result of fetal anti-convulsant syndrome. Is he aware of that? Does he feel that more research is needed to find the necessary treatment, and that the Government should respond by encouraging, and making moneys available for, a treatment to be found for those young people and their parents?

[Anas Sarwar]

I did in fact mention autism, but the hon. Gentleman is absolutely right that we need direct support from the Government to help families affected by this condition.

The campaign has identified 500 families, but there are likely to be thousands of families across the country who do not know that their child suffers from this condition, and who do not have support from an organisation such as the trust. We therefore need Government action to support those families at this difficult time. The Organisation for Anti-Convulsant Syndromes—of which Janet Williams, who I mentioned earlier, was a founder—has been contacted by more than 500 families, with nearly 700 individuals affected by the condition.

The drug sodium valproate, which is manufactured under the name of Epilim by Sanofi, has been prescribed in the UK since the 1970s. Despite the drug’s efficacy in treating certain types of seizure, research has demonstrated that it carries a higher risk to the exposed foetus than other drugs. The first case reporting the effects of sodium valproate during pregnancy appeared in 1981, and it grew to be a hot topic within the medical profession in the 1980s, with numerous reports appearing in the medical journals. The report, however, was never investigated in the review of medicines from 1971 to 1990. The then Medicines Control Agency, which became the Medicines and Healthcare products Regulatory Agency in 2004, did not pursue the claims made by the medical research community. The MHRA “Current Problems in Pharmacovigilance” reports addressed the effects of sodium valproate in January 1983 and continued to do so intermittently. No action was taken, however, to convince Sanofi to recall the drug, improve it, or provide comprehensive warnings to patients and their doctors.

Medical Implants (EU and UK)

Jim Shannon Excerpts

Wednesday 6th March 2013 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I do not serve on the Committee and I do not have the knowledge of the hon. Members for Ellesmere Port and Neston (Andrew Miller) and for Southport (John Pugh) on this subject, but I want to bring a couple of matters to the House’s attention, including some that are of importance to my constituents.

My first point relates to recommendation 29 on transparency of evidence. It is very important to have that recommendation in the report for the sake of those who have had breast implants over the years. Some of my constituents unfortunately found themselves on the wrong side of the PIP scandal when the companies that had been involved in doing the operations then went bankrupt or disappeared from the market. There were also some cross-border issues in relation to the border between Northern Ireland and the Republic of Ireland. Ladies who had put aside substantial amounts of money for the operation, which in many cases they probably could not afford, found themselves at the cold end, if I may use that terminology, of what happened. I am very pleased to see in the report the transparency that the Committee has sought to achieve.

Will the Minister confirm for the record that all the proposals in the recommendations will apply to Northern Ireland? I am ever mindful that health is a devolved matter in Northern Ireland, and I want to make sure that the recommendations, which are very well put, will apply there in the same way as on the mainland. I am ever mindful, too, that in many parts of the world people can buy almost any items online—not implants or hip replacements, but almost every drug for almost every condition, including cancer, heart conditions, epilepsy and depression. There is always someone out there who will try to take advantage of someone else’s unfortunate health issues.

My second point relates to help for small companies. Recommendation 12 is very important, and I quote it for the record:

“We are not fully convinced by assurances provided by the Government or Commission that this would not hinder small companies bringing products to market. The Commission and Government should explain how they intend to support small, innovative companies in the medical services sector if pre-market approval becomes prohibitively costly.”

Small companies in all parts of the United Kingdom hold the key to the employment opportunities that arise, as the Minister and, indeed, the Prime Minister have said. That is certainly true in my constituency. T. G. Eakin is a pharmaceutical business outside Comber that produces some of the most excellent medical products, including a high-quality skin protection product for use in stoma and wound care that it exports all over the world and for which it has received numerous awards. The company is renowned for its quality and expertise.

I want to underline the point that we should import such products only when it is not possible to produce them ourselves. We must fight for the United Kingdom of Great Britain and Northern Ireland. When we do import such products, it should be highly regulated. Perhaps the Minister could indicate how we can provide more opportunities for small businesses to manufacture these types of products in the United Kingdom. T. G. Eakin provides jobs for some 80 people in my constituency and is planning a factory expansion that will produce about 20 more jobs.

In conclusion, there is a high level of expertise in some companies in the United Kingdom. Recommendation 12 of the report plays up that point. Perhaps the Minister could respond to that recommendation. There are massive opportunities for the United Kingdom to do more in this area. Why do we import when we can produce quality products at home and produce jobs off the back of it? That is what we should do. We can lead the world with our expertise not only in the manufacturing of products such as those produced by T. G. Eakin, but in our universities. Queen’s university Belfast and other universities across the United Kingdom explore all the medical matters and ailments that affect society. That provides opportunities. Recommendation 12 could perhaps help us to make the most of those. I would like to know how we can do that across the United Kingdom. If we can do more, let us do it.

Home Care Workers

Jim Shannon Excerpts

Wednesday 6th March 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I, too, thank the right hon. Member for Oxford East (Mr Smith) and congratulate him on bringing this matter to the House for consideration. There will not be one person in the House or outside it who is unaware of the importance of home care workers and what they do. Unfortunately, we can all tell horror stories like those that the right hon. Gentleman told at the start of the debate, but we also have many good stories of care workers who do tremendous work. Where would we be without the good work that they do?

Thanks to medical innovation, people have a longer life expectancy now than they had in the past. As a result, people are trying to live at home just a wee bit longer before they go into a residential or nursing home. A great many people now retire to my constituency of Strangford, because it has the seaside and is also a lovely place to be, and we are very pleased that they are coming to live in our area. However, they are people of a certain generation, and the expectation of people in Northern Ireland is the same as that of people in the rest of the United Kingdom—that they will live that wee bit longer. I believe the Government have been encouraging families to help at home before turning to residential nursing care.

There must be robust regulation of care workers to ensure safety and value for money. In the news, we often hear horror stories of someone taking advantage of the elderly or vulnerable. Hearing such stories concerns and annoys me, but it is not the case in the vast majority of circumstances. There should be regulated training and assessment as well as funding and help, to ensure that we get things right, which is the gist of the debate today.

In the past I have spoken about the difficulties that welfare reform will bring for carers. I shall use the example of my brother, who had a motorbike accident approximately eight and a half years ago that left him with some brain injuries. My parents are well into their 80s—81 and 83, mum and dad—and their ability to cope with my brother and his particular circumstances lessens as every year passes, because the nature of life is that the older we get, the less physically able we are. We are very pleased and blessed to have my brother able to speak and converse with us; the difference is that our Keith will never be able to work again or, as he would love to, ride a motorbike again—that will never happen. He is able to keep his independence due to the carers who come to see him, and they are tremendous. There is perhaps not as much funding as there should be in the NHS for carers; Keith is reliant on his disability living allowance to pay for the help he needs. If that were to change, he would have to be placed in a facility with full-time carers, which would adversely affect his mental health and cost the Government a lot more to provide. That is my honest-to-goodness, personal opinion in the case of someone close to me.

Such situations are replicated across my constituency and in constituencies across the UK; there are many cases. It is essential that home care continues. If people cannot afford to pay for reputable carers, it is more likely that they will look for carers who are less expensive and perhaps less qualified. That is why the Government must regulate more now.

I make a plea for Crossroads Caring for Carers Northern Ireland, which primarily provides domiciliary respite care. It has offered that service for carers in Northern Ireland since 1984, and provides in excess of 200,000 hours of respite care to more than 1,200 families per year. It does tremendous work, as do many others. The service is unique, because it is aimed specifically at the carer. Crossroads is committed to providing a quality, flexible home-care service; its care attendants enable the carer to have a break, by carrying out whatever tasks the carer would normally do. Carers can take a break from caring, in the knowledge that those they care for are receiving quality care from Crossroads. In other words, every bit of quality care will be provided by Crossroads. A break from caring is invaluable in reducing the psychological and emotional stress that many carers face. Crossroads domiciliary respite care helps carers to continue to provide the support they give to a sick, disabled or elderly person.

The care provision is tailored to each caring situation; everyone is unique and the service adjusts to the unique circumstances. Individual care plans are agreed between Crossroads, the carer and the person with care needs. People decide for themselves what help and support they need, and Crossroads responds. Care attendants help with a range of personal care tasks, ranging from bathing and personal hygiene to complex care needs. Through their families, I regularly meet many constituents who have complex care needs. Crossroads adopts a flexible support approach, with care attendants helping with almost any task that is part of everyday living.

Funding for Crossroads is under stress, as I said, so less and less help can be given. That brings us to the thrust of the debate: people are left in situations where they must look to cheaper alternatives, which are not always better. It bears repeating that the Government must address care in the home needs. Too many people are living in dirty homes and not being fed enough. There is only so much that families can do. Although we are trying to save money, care in the community cannot bear the brunt of what the changes will bring. Crossroads Caring has lost the bulk of its funding due to cuts. That will mean more elderly people living in unfit conditions because too much is required of their carers. With respect, the Government do not seem to understand that if they put a little into respite help for carers now, it will mean that carers can continue to care rather than giving up and putting their loved ones into state-sponsored homes, which are more expensive and where issues with carers are more apparent. Saving a penny now will soon mean spending thousands later. I hope when the Minister responds, he will give some indication of the Government’s strategy.

Those advertising care at the moment can do so while providing little training or checks on their staff, as hon. Members have indicated, and that must end. There must be regulation, qualifications and a set standard to which all carers and service providers adhere. When the Government set that in place, we will hear fewer horror stories and more feel-good stories, of which there are thousands and thousands. They are not the stories that make the press; they are about the many carers who go above and beyond their calling to provide care.

As an elected representative—as an MP and a former Assembly Member and councillor—I know of the good work that carers do. They come to me regularly, in their own time, to seek help for those for whom they care. I am always impressed by the fact that carers spend additional time on those for whom they care—above and beyond what is expected. We hear the negative stories, but the good ones always make us feel much better about the good work that carers do in our constituencies.

I am sure that, like me, colleagues feel there must be proper training and monitoring and that it must be put in place in a timely fashion. As each day passes, more people are being cared for at home. We have a duty to ensure first, the regulation of all carers; secondly, the safety of those being cared for; and, thirdly, and most important, peace of mind for the family of the person who needs care. I congratulate the right hon. Member for Oxford East on securing the debate. I look forward to a good answer from the Minister and to his support.

--- Later in debate ---

[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Turner, and to follow my hon. Friend the Member for Nottingham South (Lilian Greenwood) and all other hon. Members who have spoken.

I congratulate my right hon. Friend the Member for Oxford East (Mr Smith) on securing today’s debate. Home care workers often work in isolated environments, and the people who receive care are isolated. Too often, they do not have a voice, and one of our jobs as Members of Parliament is to provide a voice for the voiceless. My right hon. Friend has helped us to do that today.

The issue is extremely important. More than 800,000 people provide home care in the UK. Some 80% of them are women, and their median age is about 40. They provide vital, intimate and personal services to more than 1 million of the most vulnerable people in society. If any other policy area had that scale of figures, this debate would be on the Floor of the House, with many other hon. Members present. It is good to have hon. Members here in this debate, but the issue that requires addressing is a huge one.

The help that home care workers provide is crucial for older and disabled people, because it helps them do what they want, which is to stay living independently in their own homes. It is crucial for families, who often have to go out to work and cannot provide support and care for their elderly relatives. Also, they might not live nearby, as I know well myself. Home care help is crucial also for the public finances and taxpayers, because if we can keep more people living healthily and independently at home and not going into hospital, taxpayers will receive better value for money.

Like other hon. Members who have spoken today, I have been concerned about the issue for a long time. Last May, I held a domiciliary care summit in Parliament with the United Kingdom Homecare Association, with 50 providers coming along. I have work-shadowed home care workers in my constituency, including Amanda White. Going out on an early-morning shift with her was an eye-opening experience. I also speak to many older and disabled people and care workers in my constituency and across the country. Many of the points that I have heard have been repeated by right hon. and hon. Members today.

There are many examples of excellent, decent and respectful care. The home care workers to whom I have spoken, including Amanda, love their job. They feel that they are doing something important for vulnerable people, helping them to live the kinds of lives that they want. However, the overwhelming picture is of a vicious downward spiral, with ever-increasing demand and ever-decreasing budgets, poorly paid, motivated and trained staff, and poor-quality care. Just to summarise, I will go through five issues that many hon. Members have raised today.

The first issue is low pay. Many people do not get even the minimum wage at the end of the week, because they are not paid travel times. Unison’s survey, “Time to care”, which hon. Members have mentioned, found that half of those who responded said that they did not get paid travel time, rising to more than 80% in the private sector. King’s college London has found that between 150,000 and 220,000 people working in the social care sector get paid less than the minimum wage. I will ask the Minister some questions about that towards the end.

The second issue concerns shorter and shorter visits for people with higher and higher levels of need. It is important to remember that as budgets are squeezed, councils raise their eligibility criteria, so people who need care and support at home have greater needs but get shorter and shorter visits. According to the UK Homecare Association, three quarters of visits are for 30 minutes or less, and one in 10 visits are for only 15 minutes. As several hon. Members have said, that is completely inadequate to get someone up, washed, dressed and fed, particularly if they have dementia. Anyone who knows someone or has a family member with dementia will know that they often struggle in the morning, which is a really disorientating time.

[Jim Shannon]

One thing that carers provide to those on whom they call is a wee bit of a chat in the morning—someone to speak to—because many people have no one at all to speak to. When they come in, they light the fire and do all the things that the hon. Lady has mentioned, but communication between carers and those they visit is important. Does she think that that should be given more time?

[Liz Kendall]

Care and communication is vital for people with all sorts of frailties and conditions, but particularly for those with dementia, as carers try to keep their memories and brains going. Those people often feel lost in a fog, and having some kind of contact is vital to keeping them going, so it is important.

We have heard about the problems of call cramming, with carers being rushed, getting late to one client and leaving early for the next. Older people are worried when they are left waiting on their own, and staff are frustrated that they have to rush in and out.

The third issue that has been raised is zero-hours contracts. As hon. Members have said, such contracts are very bad for workers, because they find it difficult to budget and plan their lives. Zero-hours contracts make it hard to attract people to the sector. They are also terrible for the users—older and disabled people who do not get continuity of care. I cannot imagine someone coming round to get me out of my bed and take me to the shower. I would be naked and they would be washing me, but I would not know who they were, because they would often be different people each time. We would not put up with that for ourselves, and we should not expect it for older people either.

The fourth issue is the lack of training, which is a real problem in dementia care. It is only since having known people with dementia that I have fully understood why they are seen to get aggressive: they do not, but they are frustrated because they cannot remember things. Carers need detailed training for that.

The fifth issue is the vicious downward spiral or vicious circle that leads to poor care for users of services and real problems for staff. The last UK Homecare Association report states that vacancy rates are at 21%, so we are simply repeating the problems.

In my remaining time, I want to make three comments about why that is all happening and what we need to do. Clearly, demand has increased in recent years. However, as my hon. Friend the Member for Wirral South (Alison McGovern) said, when local councils’ budgets are being cut by a third, when adult social care is 40% of their budget on average and their biggest discretionary spend, and when the money that the Government say they have transferred from the NHS has not been ring-fenced, it is inevitable that care budgets are being cut. Figures from the Department for Communities and Local Government—the Government’s own figures—show that more than £1.3 billion has been cut from older people’s social care budgets since the coalition came to power.

There are a few deeper things going on. First, the caring profession is mostly delivered by women and is low-skilled. Such professions have always been neglected in the past, so that is a concern. Secondly, the problem is invisible: it concerns isolated staff and isolated, frail older people who do not have a voice. In talking about the care crisis, I always tell people that I have received five letters about the care crisis in my constituency and 99 about saving forests. I am passionate about forests, but getting only five letters on the care crisis shows that this is an issue of isolation and we should stand up about it.

NHS Commissioning Board

Jim Shannon Excerpts

Tuesday 5th March 2013 Commons Chamber

[Norman Lamb]

The regulations will help substantially in ensuring that CCGs maintain control over the judgments they make in the interests of patients. European competition law existed as much under the previous Government as it does under this one, and these regulations will help to protect CCGs against those powers.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for his statement. Will he assure us that competition will be at the core of what he is trying to achieve? Will the Government prioritise clinical outcomes, with targets to deliver and an increasing number of patients to be looked after?

[Norman Lamb]

I apologise, but I simply did not hear the question.

[Mr Speaker]

We wish it to be heard. The hon. Member for Strangford (Jim Shannon) must always be heard when he is on his feet. Let us hear it.

[Jim Shannon]

Perhaps I should give a lesson in Northern Ireland-speak. Will the Minister assure us that competition will be at the core of what he is trying to achieve and that the Government will prioritise clinical outcomes, with targets to deliver and an increasing number of patients to be looked after?

[Norman Lamb]

Competition should only ever be used to enhance the interests of the patient and to improve patient care; it is not an end in itself, and that must always be the case. These regulations will ensure that that is the case and that other vital factors such as co-operation and integration must be taken into account by CCGs in making their judgments.

Health Professionals: Regulation

Jim Shannon Excerpts

Monday 4th March 2013 Commons Chamber

[Stephen Barclay]

My hon. Friend is right. A lot of the people at the Care Quality Commission doing the clinical assessments are not clinically trained, and, even when they have a clinical qualification, it often does not relate to what they are looking at—for example, we might have doctors looking at baby units. Her point applies to coding as well: as seen in media reports last week, the people reinterpreting the coding are often not clinically trained.

Whistleblowers have a unique vantage point on what is happening with patient safety, but for too long we have hypocritically lauded their contribution publicly while silencing or gagging them in practice. The Commission for Health Improvement found problems at Mid Staffordshire back in 2002, a peer review of critically ill children by the strategic health authority criticised Mid Staffordshire in 2003 and 2006, and whistleblowers at Mid Staffordshire raised concerns as far back as 2005, yet the warning signs were not acted on. Many members of staff simply chose to close ranks. There appeared to be a bullying culture which discouraged people from coming forward, and those who did were threatened. One nurse at Mid Staffordshire summed up the position by saying:

“The fear factor kept me from speaking out”.

This is not an isolated case. It is almost beyond parody, but the Care Quality Commission, the body to which whistleblowers might turn, itself used gagging clauses. It disgracefully smeared Kay Sheldon, a member of its board. When she had the courage to speak out, it was suggested that she had mental health problems. That is the culture. As my hon. Friend the Member for Bristol North West (Charlotte Leslie) pointed out during Prime Minister’s Question Time last Wednesday, three reports commissioned to mark the 60th anniversary of the NHS in 2008 which identified problems appear to have been buried. One of those reports, to Ara Darzi, referred to a “shame and blame” culture, and said that fear was pervading the NHS and at least certain elements of the Department of Health. Why were those reports buried?

Figures I obtained after a two-year battle in Whitehall showed that £15 million of taxpayers’ money had been spent over three years to gag whistleblowers. Why are we spending £5 million a year to silence those who are brave enough to speak out? We hide behind the guidance which says that the Public Interest Disclosure Act 1998 protects them, but, as we have seen in the Gary Walker case, trust lawyers threaten and intimidate whistleblowers although they know about that protection. I welcome the Secretary of State’s recent letter, but I must point out that gagging clauses have no place in the NHS today.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this important matter to the House’s attention. Does he agree that, at a time when mortality levels in the NHS are the highest they have been for years, the restoration of public confidence in the service is imperative? What steps does he think the Government should take to ensure that it is restored, and people no longer feel that it is dangerous to go to hospitals in our constituencies?

[Stephen Barclay]

The answer is to tell the truth. Constituents come to my surgery—I am sure that that the hon. Gentleman has the same experience—and talk about going to visit a husband of many years and finding him naked from the waist down, or taking soup in to feed patients. They know the issues. Let us be candid. There are many wonderful things about our NHS, but let us not hide the failures and concerns. Let us not have a culture of cover-ups that silences the whistleblowers.

An official NHS circular from 1998 states:

“It is not contrary to the Department of Health’s policy for confidentiality clauses to be contained in severance agreements.”

Will the Minister ensure that that is scrapped? The letter from the Secretary of State does not force trusts to take such action, and I think it is high time that we made the position on gagging clauses clear and beyond doubt.

Regulatory failure across hospitals nationally shows the need for greater data transparency, so that we can see the true patient outcomes and protect staff who speak out. That will secure a higher-quality and safer NHS for patients across the board. We need to move the health service out of its cover-up culture and into the light, and to ensure that individuals are held to account. The Prime Minister has said that sunlight is the best disinfectant, and that applies on our hospital wards. It is best for us to have well-informed patients and staff who are able to voice their concerns. It is clear from what happened at Mid Staffordshire, at the 14 hospitals that are under investigation, and at the 25 that were drawn to the attention of the Secretary of State that concerns about those hospitals—along with the many other concerns that are being expressed around the country—have not been acted on so far. I hope the Minister will be able to reassure us that he will now speed up such action.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 26th February 2013 Commons Chamber

[Anna Soubry]

The hon. Gentleman makes a very good point. Our advice is clear and the chief medical officer continues to give this advice: women who are pregnant or trying to become pregnant should not drink alcohol. If they feel that they must drink it, they should drink one or two units once or twice a week, at the very most. Our advice is clear, but he makes a good point, and I am happy to discuss it with him further.

[Jim Shannon (Strangford) (DUP)]

Recent NHS figures show that £2.7 billion was spent on alcohol-related illnesses. Will the Minister consider a campaign across the whole of the United Kingdom, including the Northern Ireland Assembly and Northern Ireland as a region, to combat the issue of drinking during pregnancy?

[Anna Soubry]

That is a very good point. The overconsumption of alcohol, whether by a pregnant woman or not, greatly concerns the Government, and that is one reason we want to introduce a minimum unit price of 45p. It was a good point well made, and I am always happy to meet the hon. Gentleman to discuss the matter further.

Ankylosing Spondylitis

Jim Shannon Excerpts

Monday 25th February 2013 Commons Chamber

[Huw Irranca-Davies (Ogmore) (Lab)]

Let me begin this debate by posing what may seem a little like a pub quiz question. What do all the following people have in common: Mick Mars, the guitarist for rock band Mötley Crüe; Vladimir Kramnik, the Russian world chess champion; Mike Atherton, the English cricket player; Jens Stoltenberg, the Prime Minister of Norway—and, not forgetting, me? We all have a condition called ankylosing spondylitis—athletes, chess champions and rock gods and Members of Parliament: we can all get it, along with around 200,000 other people from all walks of life across the UK.

Ankylosing spondylitis is not a condition we hear a lot about, yet the 200,000 people with this condition are roughly twice the number who have Parkinson’s disease or multiple sclerosis. Perhaps it is the very name ankylosing spondylitis, which does not lend itself to easy headlines or easy campaigning, although it may also be due to the historical lack of awareness, including among GPs and clinicians, of the condition. AS is often overlooked and misdiagnosed, but it is a type of arthritis that can start when people are young—often between 15 and 35 years of age. It is a type of chronic, long-term arthritis that affects parts of the spine, including bones, muscles and ligaments. The condition can be severe, with around one in 10 people at risk of long-term disability. It is often misdiagnosed or diagnosed late—typically 10 years late—and that was certainly the case with me.

Let me begin by setting out drily and coldly the standard description, and I would like to thank the National Ankylosing Spondylitis Society for its help with that. It says:

“AS usually starts in the late teens and early twenties and can cause lifelong pain and stiffness. There is no cure for AS. It’s a form of inflammatory arthritis mainly affecting the spine and hips, which may fuse over time. Ankylosing means fusing together and spondylitis means inflammation. It can also cause inflammation in other areas of the body, including the heart, the bowel and the eyes. Unless treated and managed effectively, AS will lead to great pain and can render people immobile and unable to work”—

and so on. It is worth using the words NASS has collated to illustrate what this means practically. People with the condition have described the type of task that can cause difficulty. One person says, for example:

“Opening and closing the boot of my car is a nightmare for me and makes it so much harder for me to get out and about with my 2 year old and my 5 year old.”

Another draws attention to the problems of simply

“sitting on the grass having a picnic.”

Another says that

“washing my hair and putting on tights”

is a problem. Others refer to

“pouring water out of the kettle”

or

“reaching high shelves or cupboards”,

and so on. NASS notes that

“people with AS deal with constant pain and stiffness, along with high levels of fatigue. In the early years it is an ‘invisible’ illness with bodies showing no outward signs of the pain and suffering, making it difficult for others to understand what they are experiencing.”

It is worth turning to some of the words that people with AS use to describe themselves. One person says that they feel

“isolated, lonely, fed up with pain, envious of”

what they say are “normal people”. Another says:

“I have low self esteem, feel isolated, depressed and in constant pain. I am fed up of swallowing all the tablets and sticking a needle in my leg…I hate the shape of my back and the position of my head. But people always say I have a smile on my face and look so well.”

Another says:

“I feel overly tired most days. Outside of work my participation in activities has been reducing. I don't spend as much time as I used to socialising with friends and family. I used to be very active and go out in the evenings but now I have early nights instead.”

Every single person with AS will have a different experience, but here is mine. I, like many others, was diagnosed very late in life. In my late teens, I played first division and county badminton, and competed in national competitions. My tennis was not too bad either, and I was a pretty keen leg-break bowler for my school, though my rugby had long gone. But during and after matches I would experience real stiffness and soreness in the neck and the spine. I found it increasingly hard to look up towards the shuttlecock as it descended. However, I thought that this was just routine, as I was extremely fit and active. As the years went by, the stiffness became more routine and more painful, and progressively the flexibility in my spine and my neck grew less and less. At the time, I was working in sports centres, I was coaching sport, and I was still actively playing many sports myself. I thought that it was just part of a sporting life: you end up creaking a little bit.

By my late twenties, the stiffness and the pain were periodically debilitating, and affecting my sport and my general health. I had been to see GPs over the years since my teens. I had been given strong painkillers, sometimes steroids. I had been to see masseurs and chiropractors who had stretched and crunched me, worked out the knots in my neck, and applied various odious potions to me. I had resorted to homeopathic medicines, including a vile concoction involving exotic mushrooms from Russia, complete with a handbook on how to use it, and various mail order medicines. Some of these were harmless but utterly useless. Others were probably directly detrimental to my health and even antagonised the condition.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this very important matter to the House. This debate will raise awareness, but does he agree that there is also a need for awareness in the benefits system, because I know people in my constituency who have difficulties in getting disability living allowance for this condition?

[Huw Irranca-Davies]

That is a very important point. People often refer to it as a bad back, growing pains, and as an assortment of other things, but that is a classic case of misdiagnosis. If somebody has AS, it does not go away. It is long term and debilitating and unless diagnosed, it will get worse and worse. The hon. Gentleman is absolutely correct.

At that stage of the development of the condition in me, no one had diagnosed it, so I was trying anything and everything. Then, as luck had it, in desperation I had an appointment with a different doctor because my usual one was away. He suggested that I visit a rheumatologist, and that is where I first heard of the condition called ankylosing spondylitis. There started the beginning of a more coherent diagnosis and a programme of treatment involving appropriate physio- therapy and, when needed, oral steroids or, when the problem was severe, steroid injections directly into joints. By this stage, in addition to the fluctuating but regular stiffness and pain, every few months I would have a major flare-up when my joints, especially ankles, knees and hips, would swell like billy-o and scream with pain. Yet—this is a common refrain from AS sufferers—I would just carry on. Sufferers get our heads down and carry on. We build a tolerance to pain and a dogged determination. It is far from heroic; it is just pragmatic. We have bills to pay, places to go and people to see. We just do not give up very easily.

My situation came to a head here in Parliament. The story I am about to tell will be disbelieved by many, because it reveals—wait for it—the compassion of the Whips Office. Back in 2003, I had been struggling along and getting by, but this was the mother of all flare-ups. I have the acute form of AS, which I sometimes feel makes me fortunate, although I guess that others who have it may disagree. Rather than enduring constant pain and discomfort, I could go for months without problems, then—bang!—when it hits, it hits big.

The early-warning aches, throbs and fatigue started about a month before the crunch. After hobbling slowly for a couple of weeks, I resorted to using a stick, then two sticks, and then switched to crutches a few days later. Progressively, I also looked like I felt—like I had been through 10 rounds with Mike Tyson after a week without sleep. Finally, for one particular vote it took me nearly 15 minutes to walk from one end of the voting Lobby to the other, which is the length of this Chamber. I was in so much pain. At that point, a friendly Government Whip whispered to me, “Huw, get yourself home.” Although that reveals the compassion of the Whips, the following sentence was telling: “Get yourself better, ’cos we need you back in two weeks for a crunch vote.” Still, I take compassion wherever it comes from and whatever the motive.

That episode finally got me on to the treatment that has transformed the quality of my life over the past decade and—touch wood—has meant that I have not had a major flare-up in all that time. I was fortunate to be referred, finally, to an AS specialist and was put on to an innovative and then experimental treatment called anti-TNF—anti-tumour necrosis factor—which is an immunosuppressant that has helped control the condition. It is not without the risk of side effects and I would prefer not to be on medication for the rest of my life, but my quality of life has been transformed. Anti-TNFs, which are now moving on to new generations that can target specific types of AS, will not be right for everyone, but I say to the Minister that, where appropriate, they really must be made available, and investment in research must also be maintained.

People such as me have much to thank Arthritis Research UK for its research in London in the 1990s, which led to successful trials of anti-TNF therapy.

Suicide Prevention

Jim Shannon Excerpts

Wednesday 6th February 2013 Commons Chamber

[Dr McCrea]

Once again, I am deeply appreciative of the hon. Gentleman’s intervention and I wholeheartedly agree with him. We will endeavour to take up that point as the debate continues.

Tomlinson found that about 150 suicides were recorded annually between 2000 and 2004, but by 2006 that figure rose to 291. He argued that the end of the conflict in Northern Ireland might have brought its own problems. Figures released by the Office for National Statistics show that in 2011 there were 6,045 suicides among people aged 15 and over in the United Kingdom—an increase of 437 compared with 2010. The UK suicide rate increased significantly between 2010 and 2011, from 11.1 to 11.8 deaths per 100,000 of the population. That trend was further reflected in Wales, which recorded 341 suicides—its highest rate since 2004. Scotland also saw an increase, from 781 deaths by suicide in 2010 to 889 in 2011.

[Jim Shannon (Strangford) (DUP)]

I thank my hon. Friend for setting the scene so clearly for everyone in the Chamber. The suicide rates over the last few years, which he has outlined, cover the period of the economic downturn. Does he feel that, at this time especially and for that very reason—the economy and the downturn in jobs—there should be a greater focus on suicide across the whole of the United Kingdom?

[Dr McCrea]

I thank my colleague for his intervention.

Although I have given a lot of statistics—I will come to some of the causes in a moment—they can be very cold things. I want to draw the House’s attention, very earnestly and gently, to the fact that behind every statistic is a personal tragedy—a personal tragedy that a person reached the point where they felt that there was no other way to go; a personal tragedy because no one can fully understand the loneliness or desperation that a person feels trapped by whenever they reach the point at which they think that the only way out is suicide.

There is no one reason why people take their own lives. It is often a result of problems building up to the point where that person can see no way out to cope with what they are experiencing. Factors that have been linked with suicide include unemployment; economic decline; personal debt; painful and disabling illness; heavy use of, or dependency on, alcohol or other drugs; children and adults dealing with the impact of family breakdown; the loss or break-up of a close relationship; depression; social isolation; bullying; and poor educational attainment. Those experiences have been shown to make people more susceptible to suicide. It may be that a seemingly minor event becomes the trigger for them attempting to take their own lives—on many occasions not to die, but simply to get relief from their unbearable pain. Low self-esteem, being close to tears and not being able to cope with small, everyday events are all signs that someone is struggling to cope with overwhelming feelings. Yet it is often difficult to tell whether someone is suicidal or depressed, as people in crises react in different ways. Uncharacteristic behaviour can often be a sign that something is very wrong.

One of the main problems that I want to address in this debate is: where do people turn to for support and help? Let me first acknowledge the work done by our front-line health and social care professionals, and the effort that has gone into the development and delivery of suicide prevention strategies, which aim to identify regional risk factors, establish key objectives via a cross-section of organisations, and seek ultimately to reduce rates of suicide and self-harm throughout the United Kingdom. For example, in Northern Ireland, I appreciate our ministerial co-ordination group in the Northern Ireland Assembly. It was established in 2006 to ensure that suicide prevention is a priority across relevant Departments and to enhance cross-departmental co-operation on the issue. I was delighted by the changes made by Minister Poots, so that instead of the group meeting on a needs basis, it meets regularly to provide the sustained effort and leadership needed to reduce the high rate of suicide in Northern Ireland. I commend him for taking a long-term, upstream intervention approach to the problem.

However, in addition to Government-led initiatives in England, Wales, Scotland and Northern Ireland, credit must be given to the agencies and voluntary organisations working at the heart of our communities to provide a vital lifeline when one is needed most. I acknowledge the excellent work done by many Church organisations, which give spiritual counselling to many who feel that life is so burdensome that it is not worth the struggle. These organisations—whether Government agencies, voluntary agencies or Church agencies—have a vital role to play in complementing local mental and public health services. This work at the coal face is truly inspirational. I pay tribute to the men and women who dedicate so much of their lives to helping others.

I said earlier that people needed to know about the availability of those who are willing to help. I say that because about three weeks ago a conference was held in my constituency in Antrim after two suicides had taken place—it was not called by politicians, but by the community, because of a desire in the community to do something. I was delighted and honoured to be part of that occasion, but what I found out that day was that although a multitude of organisations deal with the problem, many in the community do not know about them. Many do not know where help can be got at the moment it is needed.

Over the past year I have had the pleasure of working closely with my right hon. Friend the Member for Belfast North (Mr Dodds) with PIPS—the Public Initiative for Prevention of Suicide and Self-Harm—a not-for-profit organisation in Belfast North that has been delivering suicide prevention and awareness training since 2008. Through my association with PIPS, I have come to understand how it believes that, through training local people to be more aware of the risk of suicide and of the sources of help available, our communities will be safer and more people will be saved from taking their own lives. Surely this must be all about prevention, because, unfortunately, there is no cure when suicide takes place.

--- Later in debate ---

[Mrs Moon]

I apologise to the House. I have lost a contact lens, and I have to wear spectacles. I cannot read my papers when I am wearing them, and I cannot see all hon. Members in the Chamber when I take them off. If I am not wearing them, hon. Members must alert me if they wish to intervene.

The hon. Gentleman is absolutely right. Families tear themselves apart over the question of why. They try to analyse behaviour, particularly in the weeks leading up to the death, to seek an understanding of it. Only if there is a suicide autopsy can one begin to look at the reasons behind a death. That is a complicated procedure that cannot be carried out for every death, but it can give some understanding of the wider reasons behind such deaths. I totally agree that the distress for families as to why the suicide has happened is horrific.

That is why the research to which we have access is important. Haw, Hawton, Gunnell and Platt found that the economic recession had a clear impact on suicide. However, the increase in the suicide rate may be offset by adequate welfare benefits; their finding was very clear on that. Other measures likely to reduce the impact of recession included targeted intervention for the unemployed and membership of social organisations. They found that responsible media reporting was also important. Research at the university of Liverpool found that more than 1,000 people took their own lives during the 2008-10 economic recession in the United Kingdom.

There are ways in which we can begin to look at some of the problems that are staring us in the face and that may be causing some of the increase that is becoming apparent. Suicides began to rise in the UK in 2008, following 20 years of decline. Figures rose almost 8% among men and 9% among women in 2008, compared with 2007. The figures reflect the increased effect of the recession. I want to reiterate that research has found that there are risks associated with failure to provide adequate welfare benefits. There are currently high levels of distress and hopelessness caused by the changes in benefit that are about to come into force.

[Jim Shannon]

I am sure the hon. Lady is aware that the Prince’s Trust recently released figures which show that one in four of those who are in work are almost always or very often depressed. Among those who are unemployed the rate rises as high as 50%. Does she feel there should be a focus on young people, who are suffering more than most? Her colleague—I cannot remember his constituency—had an Adjournment debate in the Chamber on that very topic and he highlighted the issue as well.

[Mrs Moon]

The figures show that the increased number of deaths are among an older group of men, largely those who have not experienced unemployment before, who find unemployment very difficult to deal with and who despair about being able to maintain their family lifestyle, pay their bills and see a future where they can again be economically successful. We must be careful that those who are unemployed and who need to survive on benefits for however short a period are not made to feel failures, a burden on the state or pariahs in our society.

I know that Ministers will probably argue that the Government are doing wonderful things in relation to benefits but the Office for National Statistic figures highlight a very worrying trend. I hope there will be discussions between the Department for Work and Pensions and the Department of Health to highlight the importance of Jobcentre Plus staff in particular being aware of claimants coming in who may well be suffering from depression and exhibiting signs of hopelessness and despair, and being able to take suitable preventive action.

Although the numbers are small compared with cancer, heart disease and dementia, suicide is a reflection of the overall health of a country and a community, and the ripple effects on the health of those impacted by it are very great. Other Members have spoken about the impact on families, but communities, schools and workplaces are also affected. There is an impact on people who have known the individual and people who identify themselves with that individual, which is where the risk is most dangerous.

--- Later in debate ---

[Mrs Moon]

I thank the hon. Gentleman for his intervention. I was not aware of that development in Northern Ireland, and I would like to spend some time examining it. The root trauma for many families who have experienced such a death is sometimes renewed, along with the publicity, up to a year later, which makes it very difficult for them to cope and which sets them back in the progress that they have made in grieving. Many have found it extremely difficult, so I will look at the information he provides, for which I thank him.

The all-party group has looked at the cross-Government strategy to prevent suicide in England. I will come back to that later, because it is a most important issue. We have also looked at suicide and bereavement. We talked to a number of families who have been bereaved by suicide and every one of them mentioned the importance of a Department of Health document called, “Help is at Hand”. Sadly, many Members do not know about this fantastic resource; it is not appropriately distributed and many families never get access to it. We have to find a way of getting that booklet out to people. The Welsh Assembly is looking to translate it and produce a Welsh language edition for Wales. We are also considering whether coroners and the police force would be appropriate groups to distribute that information.

We have also looked at the impact of police investigations. As Members will be aware, when a sudden death is reported, the police investigate initially under the murder manual. Families are therefore further traumatised by the feeling that they are under suspicion for the death. Once it is decided that it is a suicide, the police sometimes walk away and the family are left with no help or support and no sense of where they are supposed to go.

A suicide death is a lonely death because people stay away; they do not know what to say or how to approach the family. Often, the support that families desperately need is not there. That isolation and lack of information add to the risk of further suicides. It is important that people have ongoing support from within their community and from statutory services to see them through the grieving process.

We have also looked at the use of sport to reach out to young men. This point refers back to the question asked by the hon. Member for Beckenham (Bob Stewart) about the deaths of young men. It is important to give young men role models who have had difficulties in their life and who have contemplated suicide, despite success. Sports personalities have been particularly effective. We spoke with Ernie Benbow from State of Mind Rugby and Greg Burgess, the Choose Life co-ordinator for north Lancashire. They demonstrated how successful the use of sportsmen had been.

[Jim Shannon]

rose—

[Mrs Moon]

I am sure that I can see a hand gesturing at me. I will give way.

[Jim Shannon]

The hon. Lady’s eyesight is better than she thinks. Does she agree that TV soaps can play a key role in highlighting the issue of suicide and prevent viewers from committing suicide?

[Mrs Moon]

I thank the hon. Gentleman. There is a risk in how suicide scenes are written in soaps. There have been incidents in which a death by suicide in a soap opera has led to copycats and social contagion. The writing must be extremely careful. I know that many soap opera writers take their responsibility extremely seriously because they are aware of that risk.

There has been much talk about recipe websites. This week is internet safety week. It is extremely important that every Member of this House goes into schools in their area and talks to young people about staying safe on the internet. I went to Bryntirion junior school in my constituency last week and I asked a group of youngsters how many of them had ever received offensive material on the internet and how many of them had felt frightened, bullied or scared by what they saw. Every hand in the class went up. That is a world that we all escaped, but it is our duty to build awareness and protection in that world.

The work of the Samaritans is second to none. I want to highlight the work that it has done with British Transport police and Network Rail on the prevention of suicide on the railways. They have identified areas that have particular problems and trained their staff to be highly vigilant. They now provide support to people who enter their railway stations if they feel that there is a risk. That is a fantastic move forward.

I want to consider briefly the impact that the health and social care changes will have on the new suicide prevention plan for England. The all-party group carried out an inquiry into that. We issued a call for evidence that went out to all local authorities and directors of public health, via primary care trusts, local authorities and PCT clusters. That was followed by four evidence sessions in which we took evidence from representatives of the devolved nations, six areas of England and the voluntary sector.

The report concluded that the future of local suicide prevention plans in England depends on leadership and local champions, the identification of suicide prevention as a priority, availability of resources, and the long-term survival of suicide prevention groups already in place. The future of local suicide prevention plans in England is fragile and often relies on committed and dedicated individuals. That such plans are not a statutory requirement of the new national suicide prevention strategy is a major barrier to their survival, and that is particularly true when entering a time of restricted spending within local authorities. If something is not a statutory responsibility, often it will be bypassed or shelved.

There is no guarantee that health and wellbeing boards will address suicide prevention, or that existing plans will survive or be replaced. What will happen in areas where there is no suicide prevention plan and no history of taking an interest in the issue? In areas with no local champion, suicide prevention might be overlooked completely. We are talking about a suicide prevention postcode lottery, which is, in part, reflected in figures that show increases in suicide, differentiated across the United Kingdom.

There is no formal mechanism in the suicide prevention plan for England for suicide prevention groups to report directly to health and wellbeing boards. Without such a link, suicide prevention might not reach the agencies, and groups will be working in isolation, undermining their value and jeopardising their future. Engagement with the police, GPs and coroners is vital, yet in many areas such engagement is poor, patchy and inconsistent. Self-harm prevention and specialist bereavement services remain poor in many areas of the country.

Evidence from Northern Ireland demonstrates the importance of involving community organisations and the voluntary sector in suicide prevention. The existence of suicide prevention implementation groups in every locality was critical to Northern Ireland’s success and ensures that suicide prevention is not left to chance. The leadership at Government level highlighted by the hon. Member for South Antrim is also critical. Northern Ireland is making a difference.

In Wales, sadly, ministerial statements allocating responsibility for suicide planning were not published, and mandates were passed to local authorities but not implemented. That highlights the importance of national leadership, which comes up time and again in ensuring consistent implementation and showing what can result where no suicide prevention plan is in place. My local authority in Bridgend, however, is an exemplar of best practice and best planning. It learned a salutary lesson of the importance of such planning, which it now does excellently.

Evidence from Scotland highlighted the strength of a co-ordinated national approach to implementation—the Choose Life strategy—with the appointment of a co-ordinator in every local authority together with national funding and national leadership. The Minister of State, Department of Health, kindly gave an address at the launch of the report by the all-party group on suicide and self-harm prevention, and has agreed to respond to that on behalf of the Government.

Health and wellbeing boards need direction because otherwise we will end up with a hotchpotch of disorganised and unconnected policies, many of which have no evidence base. The National Institute for Health and Clinical Excellence is commissioning guidance for commissioners of self-harm services, and perhaps the Department of Health could look at doing the same for suicide prevention.

Workers in the field of suicide prevention are dedicated and committed, but isolated. Our inquiries showed the need to share best practice nationally, and in the near future we hope to hold a conference in the House of Commons to facilitate networking so best practice can be shared and so that we do not constantly expect people to reinvent the wheel. We will go back and look later at the effect of the suicide prevention plan for England and the impact of the reorganisation in England.

I mentioned briefly the importance of not linking suicide just to mental health services. The Appleby report of 1999 suggested that 75% of those who commit suicide are not known to services. That is important. We must not always look for a mental health link. If we do so, we will neglect to provide services that address a large number of people who take their own lives.

The debate is important. Suicide reflects on society as a whole. It can affect any hon. Member and any family. As the hon. Member for South Antrim has said, it can affect people whether they are rich, poor, successful, young or old. The sad tragedy that unites them all is that they are lives wasted, and lives we should set out to save.

--- Later in debate ---

[Jim Shannon (Strangford) (DUP)]

I congratulate my hon. Friend the Member for South Antrim (Dr McCrea) on bringing this matter to the House. I also congratulate my hon. Friends and everyone else who has spoken. It is a pleasure to have the opportunity to sum up.

Today is an example of this House working at its best. All Members and all parties have come together and issued a joint call from the Floor of the House for better services. The contributions that Members have made have shown that the House is an immense fount of knowledge. In the short time I have, I intend to highlight the main issues that have been raised.

My hon. Friend the Member for South Antrim introduced the subject very well. He referred to the bereavement caused by suicide. That is an interesting point, because people have to come to terms with what has happened and how it affects them. I had not thought about that until my hon. Friend made the point and I realise that he was right. Other Members have talked about how suicide affects a person’s entire family and their friends. The hon. Member for Bridgend (Mrs Moon) spoke about anniversaries in particular. I will return to that point in a moment. Those issues have been raised over and over again.

My hon. Friend spoke about the vulnerability of people on coming out of prison. He spoke about the drug and alcohol culture among young men. That is not only an urban problem, but a rural problem. My hon. Friend’s constituency covers both types of area.

Members have said that this must not be a taboo subject and that it is time that we faced up to it. Hopefully we have faced up to it in this debate. The contributions have been immense. We have all met people who hide their depression and anxiety. Members have raised the fact that the suicide rate is higher in Northern Ireland than in other parts of the United Kingdom.

Prevention was a key theme in what my hon. Friend the Member for South Antrim said. He referred to the impact that computers and websites can have on children. He challenged us to address these issues. That set the scene clearly for me.

The Minister referred to the steps that are being taken to reduce suicide in England. He referred to the figures for the past year. His commitment to working with regional Assemblies is good news because it means that all parts of the United Kingdom, which are represented here today, are working together.

Some 75% of those who take their lives are not known to Government agencies. I did not know that before this debate started. We can look for the signs in people, such as whether they have depression. Like all hon. Members, I have met people over the years who unfortunately fall into that category.

The hon. Member for Bridgend gave a detailed, decisive and, I would say, masterful contribution to the debate and I thank her for that. She displayed great knowledge about the rates of suicide among 30 to 40-year-olds and among females.

The question that everybody asks themselves—I have asked myself this question when friends of mine have died—is, “What could I have done to prevent it?” You search your heart, you search your soul and you almost put yourself into the grave worrying about what more you could have done. Every Member who has spoken has mentioned that. Behind that question there is perhaps a bit of guilt as well.

The right hon. Member for Bermondsey and Old Southwark (Simon Hughes) spoke about the vital importance of support groups and Papyrus in particular. I am conscious that I am summing up and not making a contribution, but I just want to say that the LINK group in Newtownards does a magnificent job to help people who are considering suicide and those who have depression.

The hon. Member for North Down (Lady Hermon) spoke about suicide prevention and the moneys available in Northern Ireland, which gives that leadership, as well as the moneys that are set aside. The hon. Member for Beckenham (Bob Stewart) spoke on behalf of soldiers who leave the service and feel vulnerable, and as Members of Parliament we have all heard such cases.

In an intervention, the hon. Member for Foyle (Mark Durkan) mentioned the sensitivity surrounding the coroner’s report, and there is a lesson there for other parts of the United Kingdom after what has happened in Northern Ireland. The hon. Member for Bridgend spoke about the use of sport for young people and the importance of correct wording in dramas and soaps, and that valid point was also made by the hon. Member for Foyle in a passionate and real way. A “suicide champion” was referred to, and the need to extend that across the United Kingdom, and the comments and points of view expressed contain lessons for all regions in the United Kingdom.

[Mark Durkan]

I am entirely comfortable with everything the hon. Gentleman is saying about how we need better to co-ordinate and mesh this work across the UK and use all means to do that. Of course, the problem is wider in these islands. Recently, Shane McEntee, a Government Minister in the south of Ireland, took his own life, and there are serious problems that need to be addressed even at school level. Does the hon. Gentleman recognise that this issue should perhaps be prioritised at the level of the British-Irish Council? Perhaps a debate such as this could take place at the British-Irish Parliamentary Assembly so that we gather all the experiences and good practice that has come out of the bad experiences in all parts of these islands?

[Jim Shannon]

I agree, and I think all Members of this House feel the same. I commend the hon. Member for Pudsey (Stuart Andrew), who referred to bullying at school and the importance of family when he was working in a hospice. He mentioned the difference between death and death from suicide—both very tragic and real issues—and spoke about the red socialist and the blue Tory working together. That is good and the way it should be in this House, doing the best we can.

My right hon. Friend and colleague the Member for Belfast North (Mr Dodds) gave a detailed account of what happens in north Belfast which, along with west Belfast, unfortunately has a reputation for the highest suicide rates in Northern Ireland. He referred to the hard work done by many people in the PIPS group—the Public Initiative for Prevention of Suicide and Self-Harm—FASA, churches and many other groups that do tremendous work. Queen’s university has made a study of north Belfast, and if my right hon. Friend ever needs facts or evidence of what is wrong and how to address it, those are issues we must consider.

I have in my notes, “Coping with peace after years of violence”, and unfortunately in north Belfast, and perhaps west Belfast, that is one of the issues, and my right hon. Friend clearly addressed that point. He and other Members referred to copycat suicides, and the hon. Member for Bridgend mentioned anniversaries. The work done by the Samaritans in A and E was mentioned, and, as my right hon. Friend said, there are lessons to be learned for us all.

The shadow Minister, the hon. Member for Hackney North and Stoke Newington (Ms Abbott), said that although any death is tragic, suicide is the worst as it poses many questions for the family left behind, and she spoke about the issue very clearly and honestly. She referred to the good work done by Labour when it was in power. I know that to be the case and I look forward to more such work.

My hon. Friend the Member for Upper Bann (David Simpson) referred to the increased number of suicides in Northern Ireland—300—and mentioned Yellow Ribbon and the 400 people helped by that organisation in one year. Four hundred people sought help, and volunteers and groups were there to help.

I thank the hon. Member for Foyle for his passionate, powerful and revealing speech that moved us all, and he put forward a number of ideas. The Maiden City has a suicide awareness day; perhaps it could be a model for the rest of the United Kingdom. He also referred to a self-harm register. Although not many people mentioned that issue in Northern Ireland, the British Medical Association referred to the fact that a third of those who self harm commit suicide, so that issue is important. He mentioned the relationship between Northern Ireland and the Republic of Ireland.

Last but not least, I remember when the hon. Member for North Durham (Mr Jones) spoke about mental health in the Chamber some time ago—I have never forgotten that speech. He spoke again today with passion and belief, and with the inner knowledge that comes from his experience. He has been able to describe that for all hon. Members in the Chamber.

We should be clear that we need the voluntary services and the Government to work together. I thank everyone for their valuable and sensitive contributions in the Chamber today. The debate has been excellent.

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.

--- Later in debate ---

[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.