(13 years, 5 months ago)
Commons ChamberUrgent Questions are proposed each morning by backbench MPs, and up to two may be selected each day by the Speaker. Chosen Urgent Questions are announced 30 minutes before Parliament sits each day.
Each Urgent Question requires a Government Minister to give a response on the debate topic.
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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.
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?
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.
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?
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.
(13 years, 5 months ago)
Commons ChamberMy 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.
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?
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.
(13 years, 5 months ago)
Commons ChamberThe 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.
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?
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.
(13 years, 5 months ago)
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.
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.
(13 years, 6 months ago)
Commons ChamberOnce 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.
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?
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.
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.
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.
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.
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.
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?
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.
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?
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.
(13 years, 6 months ago)
Commons ChamberI 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.
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?
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.
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?
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.
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.
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?
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.
(13 years, 7 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
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.
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.
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.
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.
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?
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.
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.
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.
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?
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.
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.
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.
(13 years, 7 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
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?
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.
(13 years, 7 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
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.
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?
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.
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?
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.
(13 years, 7 months ago)
Commons ChamberI 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.
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?