National Health Service

Jim Shannon Excerpts

Monday 16th July 2012 Commons Chamber

[Stuart Andrew (Pudsey) (Con)]

I am extremely grateful for the opportunity to speak in this debate. The NHS is clearly important to all of us. I have seen it personally because I have had a number of operations and through my working life in the hospice movement, where I saw how the care that is provided is so important to the families we were looking after. Clearly, the dedication of the staff is great and I pay tribute to them.

Listening to the Opposition today, it is hard to take them seriously. We can see from their actions in Wales what they would do with the NHS if they were in power. They have cut the budget, resulting in an increase of 51% in the number of patients waiting to start treatment and an increase of 156% in the number of those waiting for more than 26 weeks. All the bad news from the Opposition is therefore difficult to swallow.

I will give a couple of examples from my area. I recently met some GPs and clinicians to talk about the work they are doing to redesign musculoskeletal services. They have brought in innovative ways of ensuring that the patient knows exactly what will happen to them. Clinicians across primary care, community services and secondary care are working together to ensure that the patient has a clear understanding of the care that they will receive. They use map displays, which show a clear pathway, offer educational content for GPs to ensure that patients get the highest standard of care, and ensure that information is available for the patient.

I am proud to say that on Friday, one of the surgeries in my constituency will open a new well-being centre, which will provide a place where health care, social care and the third sector can come together to provide better ways to improve health and well-being in the town.

[Jim Shannon (Strangford) (DUP)]

Does the hon. Gentleman share the concerns of many Members, as I believe he does, over the closure of surgical units for children in the middle counties of England? If so, what is he doing to prevent it in his constituency?

[Stuart Andrew]

The hon. Gentleman pre-empts the next part of my speech and I am grateful to him for that.

As this is a health debate, I am sure that my right hon. Friend the Secretary of State would expect me to talk about the safe and sustainable review of children’s heart units. Like other Members, I have received a number of e-mails from various organisations today. One of them said that some MPs should seek to reignite the debate and that I should think about the children because if I had children, I would move heaven and earth to ensure that the service was the very best. Frankly, throughout the campaign on children’s heart units, I have only ever thought about the children. Of course I want the very best service for them, as do the right hon. and hon. Members from all parts of the House who have worked on the campaign. I have always accepted that there is a need for change. That is why I want to discuss a few related points this evening. I know that I will have an opportunity to raise it in greater detail tomorrow, but it is important that I speak about it tonight.

Access and travel times are incredibly important to the families who use children’s heart services. Logical health planning surely dictates that services should be based according to where the population lies. The British Congenital Cardiac Association states:

“Where possible, the location of units providing paediatric cardiac surgery should reflect the distribution of the population to minimise disruption and strain on families.”

Adult Social Care

Jim Shannon Excerpts

Monday 16th July 2012 Commons Chamber

[Paul Burstow]

On the proposals for portability of assessment and guaranteed continuity of care, the LGA is certainly aware and has been engaged in the consultations that we undertook last year as part of our preparations for the White Paper. It did not, of course, negotiate line by line the text of the White Paper, but it has the opportunity, as does everyone else, to participate now in the scrutiny of the draft Bill that we introduced. I hope the LGA will do so. We wish to engage with the LGA on these issues.

Integration is an important part of these reforms. Too often, people feel bounced around the system. What we do for the first time in the White Paper is set out a number of important steps towards more integration of the two existing systems.

[Jim Shannon (Strangford) (DUP)]

The Minister has used the term “integration” several times. In Northern Ireland we have an integrated health and social care system, which is working extremely well. I am conscious that that is very different from the position on the mainland. Are there lessons from the integrated system in Northern Ireland that could be applied here? We have done it well in Northern Ireland. Perhaps the example could be used here.

[Paul Burstow]

From my own limited study of the system and from visits that I have made over the years, one of the conclusions that I would draw, which is at the heart of our reforms as well, relates to culture and collaborative behaviour across the various parts of the system. That has been essential to delivering genuinely integrated care in some parts of Northern Ireland. I believe it is essential to delivering genuinely integrated care in England as well.

I mentioned earlier that end-of-life care was an omission from the Labour Government’s last White Paper. It has not been omitted from ours. We are doubling the budget of the pilots that we have instituted to test the patient funding mechanisms and to make sure that we have the necessary data to understand the benefits of a free social care system at end of life. We want to make it clear that we see the merits of such a change, and it is why we want to make sure that we have the information on which we can base the final decision.

Our goal is to shift the focus of the system to prevention and early intervention, not to wait for the system to stutter into life when a crisis strikes. We want to make it easier for people to plan and prepare, both to avoid and reduce the need for care and to meet the need for care in the first place. Last week we laid out a reform agenda of universal information and advice, national eligibility, deferred payments, integration of health, housing and social care, better transition for children to adult services, and support for carers. Together those constitute the most comprehensive overhaul of adult social care in 60 years, and they are a contrast to the motion before us, which adds nothing, says nothing about how change will be paid for, and says all that it can to scare people about the current system.

Rather like 13 years of a Labour Government, today’s motion gets us nowhere. That is why we are investing an extra £300 million in the system to support change, and why I urge my right hon. and hon. Friends to vote against the motion.

Violence against Health Workers

Jim Shannon Excerpts

Tuesday 3rd July 2012 Commons Chamber

[Nic Dakin (Scunthorpe) (Lab)]

Our national health service employs more than 1.7 million people. Of those, just under half are clinically qualified, including 120,000 hospital doctors, 40,000 general practitioners, 400,000 nurses and 25,000 ambulance staff, as well as an army of other health care workers. Only the Wal-Mart supermarket chain, Indian Railways and the Chinese People’s Liberation Army directly employ more people.

On average, our health service deals with 1 million patients every 36 hours. That is about 500 people a minute or eight people a second. As those figures suggest, the size and volume of the NHS means that literally millions of interactions between patients and staff occur every single day. In the vast majority of cases, these interactions are positive and result in successful outcomes for patients and staff alike, which is why, simply put, the NHS is one of the best health care models on the planet. But sadly, things sometimes go wrong for patients and badly wrong for staff. The superb staff who provide such sterling service to the public can find themselves the victims of violence while working on our behalf to provide those very services. The purpose of this debate is to highlight this wrong and seek support from the Government for righting it.

The NHS management service’s latest statistics reveal more than 150 reported physical assaults on health care staff per day—and that is before verbal assault is taken into consideration. According to the latest 2010-11 NHS survey, 7% of NHS staff had been victims of assault in the previous 12 months. The Royal College of Nursing’s research reveals further troubling statistics, with almost 11% of those surveyed having been assaulted at work in the previous two years and more than 60% of all respondents having suffered verbal abuse at work. Indeed, one respondent commented that

“verbal abuse seems to just be accepted as part of our work”.

That is totally indefensible.

In Northern Lincolnshire and Goole hospital trust, which serves the Scunthorpe area, there were 13.1 assaults per 1,000 members of staff in 2009-10. Although that figure is below the national yearly average of 16.8 per 1,000, it is still far too high. One assault against any person simply trying to do their job in any profession, never mind people who routinely save lives every day, is completely unacceptable.

Two weeks ago, I joined a local ambulance crew for five hours of their 12-hour shift, and I was hugely impressed by the professionalism of the paramedic team and the staff at Scunthorpe general’s accident and emergency department. Patients were treated with great skill, care and dignity, which is exactly as it should be, but I was shocked to learn that the fantastic paramedic I was with had gone to a house call about a year ago and was seriously assaulted by the man he had gone to help. He was chased around the house by the man, who violently and persistently assaulted him. The assault was so bad that it resulted in his being off work for six months.

I received today this e-mail from a staff nurse at Scunthorpe general hospital:

“I understand that you are taking part in an adjournment debate tonight on the above subject. I was assaulted by a patient in January this year. With colleagues I went to clean up a patient that…had attacked a nurse earlier in the day and no one felt able to approach him since. I was subjected to a violent attack which meant I was on sick leave for three months. I have had intensive physiotherapy and still attend physio regularly. I suffered a needlestick injury while trying to sedate the patient and will be tested for blood borne viruses in the next few weeks. During the time I was off work and, for some time since, I have been in constant pain, I had limited use of my right arm and restricted movement of my neck. I could not hold a pen to write or brush my teeth. Everyday tasks took hours and I became depressed and withdrawn. Even now I am unable to perform all my duties as a nurse. Yet, mine was not a serious injury. I have made considerable improvement but will always have some level of pain and restriction of movement.”

She goes on to thank us for raising this issue in Parliament.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this issue to the Chamber, and I wish to associate myself with his comments. In Northern Ireland, including in my constituency and in particular the Ulster hospital, there have been several attacks on accident and emergency personnel and ambulances. It is not specific to Scunthorpe but happens across the UK. Would better co-ordination between the hospital authorities, ambulance and emergency personnel and the police be a way of addressing some of these issues?

[Nic Dakin]

I thank the hon. Gentleman for his comments. He reminds us that, sadly, the problem affects people across the nations of the United Kingdom. I will come to the issue he raises later, but I want now to quote the final comments of the nurse who wrote to me:

“You can have no idea what it means to have this problem recognised and debated. I do not expect to be compensated in monetary terms for the pain I have suffered or the possibility that I may not be able to work to retirement age but I do want to see measures put in place to effectively protect staff who are expected to deal with difficult and violent patients.”

The costs of such assaults are multi-fold. There is the cost to the NHS of care for the victim, the cost to the NHS of the health worker’s absence from work and the possible loss of an employee if recovery is not complete. Added to that is the potentially devastating impact on the health worker’s own health and well-being, with further strain on family, friends and the wider community. I would like to pay tribute to all the fantastic people working in the NHS, including the people and organisations working hard to prevent such violence from taking place against health workers. Northern Lincolnshire and Goole Hospitals NHS Trust has launched an e-petition to heighten public awareness of the issue. The fact that the trust has recognised it in this way is to be applauded, but there is much more to be done. That is why the trust’s partnership approach, working with Unison and others to find ways of practically addressing the issue, is to be welcomed.

NHS Employers—part of the partnership for occupational safety and health in health care—is also actively involved in raising the issue of violence and aggression against staff, and is looking at how it can be managed, working hard to help create healthy and productive workplaces. Work is also under way—led by NHS Protect, with input from the Royal College of Nursing and others—to look at preventing and managing physical assaults on staff which result from a patient’s underlying medical condition, such as dementia. Many physical assaults result from a patient’s underlying clinical condition, but rather than ignoring this, steps can be taken to reduce the risks. Work to take these positive initiatives forward needs to be systematically supported and funded if it is to bring real change and reduce the risk to health workers from such patients.

All these initiatives are positive and to be welcomed. However, I want to highlight a number of concerns raised with me by the Royal College of Nursing, Unison and others. I am keen for the Minister—who I know is committed to ensuring that the Government do their best in this area—to say in his response what practical steps the Government are taking to address those concerns. The Government have funded work by the Design Council with a limited number of A and E units to reduce violence through design solutions. That is to be welcomed. How will the work be evaluated, and how will any improvements to the safety of staff and patients in such units be shared and implemented more widely? With the end of Secretary of State directions, which required NHS trusts to have measures in place to protect staff, how will it be possible to ensure that all provider services meet standards similar to those currently set under Secretary of State directions? They include access to a local security management specialist, training on conflict resolution, central reporting of physical assaults and a requirement to follow policies and guidance—for example, lone working guidance—published by NHS Protect.

Lone working nurses and health care workers absolutely need protection. They often form an invisible work force. Many health workers already work alone with limited, if any, back-up or support. The quite proper policy direction of providing more services in the community means that more health workers are likely to find themselves in potentially vulnerable situations as sole workers. How will Government ensure that there are systems in place to minimise risk and protect the work force?

Full consideration needs to be given to the possible impact of changes in health care delivery combined with efficiency savings on the likelihood of risk of violence against staff. In particular, a risk assessment of the impact of closing units, lengthening A and E waiting times and staff shortages needs to be undertaken and the effects mitigated. That needs to be recognised. In this climate of cost-cutting and austerity, how can we be certain that such measures will be put in place to reduce the risks to staff? Staff who report incidents need more support from their employers and the police. They need feedback after they have reported incidents, and they need to know what action is being taken to prevent any reoccurrence. Lack of feedback and support can lead to under-reporting of incidents and reduced morale.

I welcome the fact that pressure from Unison has resulted in a change to the code for Crown prosecutors to increase the number of prosecutions for assaults on public servants. The closer working relationship between NHS local security management specialists and trade union safety representatives has been a positive development. NHS Protect has also agreed protocols with the police and the Crown Prosecution Service. Under the memorandum of understanding with the Association of Chief Police Officers, the police are committed to progressing all cases of violence and abuse against NHS staff as a priority. The Crown Prosecution Service has also made a commitment to

“work with the police to ensure that these cases are treated with the seriousness that they deserve and encourage a robust charging policy”.

It is crucial that that should lead to a more consistent approach by police forces to following up the perpetrators of either physical or verbal abuse. RCN research suggests that police follow-ups are sometimes inconsistent around the country. Some forces follow up complaints robustly and work closely with local hospitals, but others appear reluctant to get involved in procedures, especially when the incident involves a patient with an underlying mental health condition. Such incidents in particular need more close examination, as a significant number of physical assaults on health workers are by patients with underlying mental health problems. How can the Government ensure that the memorandum of understanding between ACPO, the CPS and NHS Protect will be consistently and effectively implemented?

The reporting and investigation of assaults also need to be properly addressed. According to the RCN survey, although only about 11% had suffered physical abuse at work, 74% of the incidents they recalled were never reported to the police. Staff need to be confident that they will be supported by their employers and the police. They need to be given the confidence always to report assaults. There needs to be a culture of trust that, when reported, such assaults will be taken seriously and fully investigated, with proper support given to the victims. Proper feedback and support in the reporting process will help to keep up morale in the NHS work force and reassure staff that they should not expect to be put in danger while carrying out their duties on behalf of all of us.

In this age of austerity, budgets are being squeezed, and organisations that protect workers are being asked to do important jobs with a lot less funding. For example, the Health and Safety Executive, which plays an important role in keeping people safe at work, has had its work force reduced by a third in the last 10 years, with the number of inspections that it carries out falling from 75,000 to 23,000 a year. That could lead to the real danger of worker safety being jeopardised, which makes it even more important for NHS employers to take completely seriously the need to protect their work force and minimise the risk of attack from patients. Health and safety is not red tape; health and safety saves lives.

Worryingly, the cuts in NHS and local authority budgets and in the Health and Safety Executive are in danger of combining with the confusion caused by the NHS reforms to cause local security management specialists to become increasingly reliant on safety representatives to help them to identify those work areas in which NHS staff will be most at risk. Many local security management specialists used to work with primary care trusts. With the abolition of PCTs, there is a possible danger of confusion and uncertainty about their role in the workplaces that they cover. How will the Government ensure that the risk inherent in the changes does not lead to more health care workers finding themselves in situations in which their personal safety is put at risk?

Every single person should be able to go to work without the fear of physical harm. I strongly back Unison’s calls for a zero-tolerance approach to safeguarding NHS staff. Everyone needs to work together with a clear and persistent focus to make sure that all staff can carry out their work free from the fear and the threat of physical or verbal assault. When individuals are found guilty of attacks on health care workers, that should inform the sentencing and be treated with the utmost seriousness.

As Julian Corlett, Unison branch secretary for Scunthorpe general hospital, wrote to me:

“Violence directed at health workers is never acceptable and is not part of the contract of employment. We must dispel the myth that violence in the NHS is inevitable, or unpredictable and therefore uncontrollable. It therefore remains our key objective to see a significant and sustained reduction in the number of violent incidents directed at NHS staffs across the country, with more prosecutions and severe sanctions for those perpetrating such violence. There has to be the presumption that those committing these offences are more likely to face prosecution than not if we are to see sustained reductions in the figures anytime soon.”

Julian speaks from experience with great passion and clarity; his words will echo round this Chamber and in the world outside it. We should be vigilant and proactive in ensuring the safety of those who work within the NHS. In the words of the children’s laureate, Michael Rosen, on the 60th anniversary of the NHS, we must do all we can to protect the

“hands that touch us first...and the hands that touch us last”.

Community Hospitals (North-East)

Jim Shannon Excerpts

Wednesday 20th June 2012 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

Will the hon. Gentleman explain why some Members, when they are outside the House, support petitions to retain hospitals and community services, but in the House vote to stop them?

[Mr Deputy Speaker]

Order. I allowed the intervention, but I am not sure what the connection is between the north-east and Northern Ireland.

Cancer Treatments

Jim Shannon Excerpts

Tuesday 19th June 2012 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Southport (John Pugh) on bringing this matter to Westminster Hall.

There is not one of us who has not personally been affected, or who does not have family members affected, by what is referred to as the dreaded big “C”. Last year, my sister, who lives in England, had kidney cancer. The medical services here were good in addressing that and she is on the way to recovery. My father had cancer on three occasions and, due to the skill of the surgeons, his faith and the prayers of God’s people, he got over those cancers and is still here coming up to 83 years old—or young, perhaps, which is another way of looking at it. Our health care system is good at what it does. I want to make that clear.

We have the best palliative care in the whole of Europe. That matter has been debated previously in the House. However, that does not always mean that we have the best cancer treatment in every category and sector. We must look at that.

The hon. Member for Southport spoke about pancreatic cancer. Recently, I met representatives from Pancreatic Cancer UK, who gave me some shocking figures, which are available to all hon. Members. Survival rates for pancreatic cancer have not improved for more than 40 years, making it the most deadly of all cancers diagnosed in the UK, with fewer than 3% of patients surviving beyond five years. Some 8,000 people are diagnosed with pancreatic cancer every year and it is responsible for 5% of deaths from cancer, yet it receives only 1% of research funding. There was a debate on pancreatic cancer in Westminster Hall a month or two ago. It is often regarded as a death sentence—if people get it, their chances are minimal. Perhaps the Minister can tell us what has been done to address that matter in particular.

[John Pugh]

I am glad the hon. Gentleman mentioned that, because two close friends of mine died rapidly of pancreatic cancer. One point made by the people in Liverpool to whom I spoke was that, given the almost invariably fatal outcome from this cancer, it would not be a bad idea if some of the rules regarding drugs approval were relaxed a little bit, so that people could find out what worked, because in this case there is very little to lose.

[Jim Shannon]

I thank the hon. Gentleman for that valuable contribution and agree wholeheartedly. If it comes to the stage where people’s life expectancy is minimal or reduced, I believe that they would be quite happy to take advantage of new drugs, if those were available.

All hon. Members know that finances are finite in the health budget. That being so, we are grateful for the many charities that do such magnificent work, including Cancer Research UK, Macmillan Cancer Support and Marie Curie Cancer Care. However, we must get a handle on our treatment process and outcomes, which can only come through the correct use of funding. I hope that the Minister will tell us how that will happen.

In the NHS document, “Improving outcomes: a strategy for cancer”, published in January 2011, it is clear what the Minister regarded as the way forward:

“In order to achieve these principles we must also ensure that every possible penny of money the NHS has is spent improving the quality of care and outcomes that patients experience. The Government protected the NHS in the Spending Review settlement, with cash funding growth of £10.6 billion (over 10%) by 2014/15. Compared to many other government departments, that puts us in an incredibly privileged position but this is the toughest settlement the NHS has faced in a long time.

At the same time, we need to respond to the longer term pressures the NHS faces; of an ageing population and the new demands created by new treatments and technologies. That means that, as set out in the Spending Review and the 2011/12 Operating Framework, over the next four years the NHS will need to achieve up to £20 billion of efficiency savings. These savings will be reinvested back in continuing to give patients the care that they need.”

Will the Minister say whether we are on target to make those savings? If so, when will that money go back into the system?

The document contains many examples of cost-efficient care, such as people having certain treatments as day procedures and then care at home, which makes a lot of people feel more secure as well as being cost effective. We understand the reasons and the thinking behind that: it is essential that the patient is at the heart of any decision made and any strategy must incorporate this.

I am not an argumentative person—far from it, I try to get on with most people in this world—but the hon. Member for Southport commented on the advertising campaign “Have you had a cough for three weeks or more?” We do not know how successful it was. The campaign has a role to play, and those who have had a cough for more than three weeks might well have a problem. We do not know how many people went to see their doctor and, as a result, have been made aware of problems. That is perhaps a different opinion from that expressed by the hon. Gentleman.

[John Pugh]

I said that all those things need to be reviewed in the light of evidence, that there were good campaigns and bad campaigns, and that evidence decided which category they fell into.

--- Later in debate ---

[Jim Shannon]

The facts will be the number of those who take up the campaign and see their doctors, perhaps ending up with the diagnosis of a problem.

I have read different consultation responses and have seen how different cancer organisations respond. All have been positive that, to improve patient experience outcomes, it will be important for patient experience to be measured and bettered throughout the entire patient pathway. Bowel Cancer UK points out that it is important that patient conditions are not ignored by an overarching patient experience indicator. For example, the overall patient experience reported by patients at a particular provider is likely to be less relevant than the specific experience reported by patients with the same condition. Thus, bowel cancer patients should be consulted about their treatment and given the necessary support and tools to make informed decisions about their care.

I will quickly outline seven suggestions that might lead to improvements in patient experience and care. Steps need to be taken to ensure continuity of care throughout the patient pathway. Key workers and clinical nurse specialists should play a central co-ordination role to achieve that—their involvement is critical. The meaningful data on service performance should be provided, to allow commissioners to make informed choices on the services that they commission and to inform patients about the services that they might wish to access.

Sometimes it is about knowledge and patients’ understanding of how the system can work to their advantage. Tailored patient information should be provided to guide patients through their care, in the form of information prescriptions; that should also include support to self-care, because that is sometimes the best way to deal with their problems and medical condition.

Symptom management should be offered to ensure that patients have the knowledge and tools to look after themselves when they can, but also so that they know when they need specialist support. In other words, when they need to call on the specialist support, they should have the chance to do that.

Patients should be given access to treatments in the most appropriate location for them, whether surgery, radiotherapy or chemotherapy—again, knowing the full choice.

Patients should be offered signposting and support to help them return to work, as well as ongoing support to manage continuing symptoms and the side effects of treatment. We might not always see such things directly, but they are important: trauma, the effect on the patient and their families, the financial implications and knowing about rights to benefits to get through that period, such as an application for disability living allowance.

Palliative care pathways should be considered alongside active treatment and not simply at the end of life. For many of us, palliative care is end-of-life care, but it has another role as well.

Lastly, the end-of-life care strategy should be rapidly implemented. Those seven suggestions are a method for the health system to address the care needed for those who have cancer.

I shall make a quick plug for those who do the experimentation and whose task is to find new drugs, which the hon. Member for Southport mentioned in relation to pancreatic cancer care. Queen’s university Belfast is at the forefront of experimentation in the investigation of new drugs—renowned the world over—and I commend the people there for what they do, and what many others do, because we cannot do without that experimentation to find the new drugs. Nearly every other month a new drug is announced—okay, there might yet be three or four years of experimentation and investigation, but the work of the researchers is tremendous and I commend them for it.

All the responses have been noted and the document that the Minister released is precise, yet more than a year later some feel that we have not moved forward as much as we should have done. Are we achieving better patient-focused care and outcomes? I am not so sure about whether that has been achieved, but the Minister will indicate where we are. That is why I am particularly thankful for the opportunity to debate the issue here in Westminster Hall. We do not need pretty words in a document—if I may use that terminology, and not facetiously—we need action. The Minister must turn all the words into action, and that is why I support the hon. Member for Southport and thank him for bringing the matter before the Chamber today.

Mental Health

Jim Shannon Excerpts

Thursday 14th June 2012 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I am privileged to be in the Chamber to hear some of the speeches that have been made, including those by the hon. Members for Broxbourne (Mr Walker) and for North Durham (Mr Jones). It is a great privilege to hear what they said. I congratulate the hon. Member for Loughborough (Nicky Morgan) on raising the matter in the Chamber. She said that everyone has mental health issues; I suppose it is a matter of how they deal with that and control it. We all have a breaking point. I hope that I never reach that breaking point, and that others do not do so either.

As an elected representative, in my interaction with constituents in my office, I see very clearly how people deal with depression. As the hon. Member for Strangford, I wish to express views on behalf of my constituents, ever mindful of the fact that health in Northern Ireland is a devolved matter. However, the debate is on mental health generally, so the issues in Northern Ireland are every bit as relevant as those in Broxbourne, North Durham, Loughborough and anywhere else in the United Kingdom. Every day I deal with those issues, whether through employment and support allowance appeals or disability living allowance appeals, or by interacting with people and the way in which they deal with their benefits.

An issue that has been highlighted in the Chamber is the difficulties that can arise. That was an issue before the economic downturn, but it is a bigger issue today, because people find it harder to deal with the economic and financial realities that face them, which compounds their problems. In all honesty, over the past year or 18 months, I have seen greater need in people who suffer from depression, as they have had to deal with issues with which they have never had to deal before. We have debated many great issues in the Chamber in the two years in which I have been an MP, but this issue is certainly one of the most important.

I want to deal with two issues. I want to talk about mental health from the perspective of Northern Ireland, and I also want to touch on an issue the hon. Member for Loughborough mentioned when she talked about the armed forces. There are problems for our soldiers and service personnel returning from the battlefield, whether Afghanistan or Iraq, because their memories of those conflicts do not finish when they get off the plane or boat after returning home; they are still with them many years after the conflict. I feel strongly about that for those who returned from both Iraq and Afghanistan.

Good mental health should be a priority for us all, as every Member who has spoken so far has indicated. In Northern Ireland we have also made it a priority. However, Northern Ireland—I say this with respect—has been underfunded for many years, owing to direct Government reasons and others. The figures show that mental health is a greater issue in Northern Ireland than it is in other parts of the United Kingdom. People would say that that is perhaps because of the 30 years of the troubles, which I think is probably true. When someone is under pressure or stress and worried about whether they will live or die, they turn to drink, drugs or other things, and that affects their lifestyle. Ultimately, a great many people in Northern Ireland suffer from depression and mental health issues because of our country’s past. I am glad to say that we have moved on. We now have a partnership Government and we are working together to ensure that there is a future for everyone, and that in the future there is a lessened threat of terrorism.

The British Medical Association in Northern Ireland has done significant research on mental health there. When the hon. Member for Loughborough introduced the debate she mentioned a number of the points that are also in the BMA’s report, so I could not help but wonder whether she had perhaps seen the same report. It contained a number of points that she referred to and commented on. I think that the reason those points are so similar to what she said is that the same issues are just as relevant in Northern Ireland as they are in Loughborough and the rest of the United Kingdom.

I would like to touch on how we can improve the situation. I know that the Minister will have a detailed and helpful response to the debate. To start with, it is a taboo subject. I think that the Government and policy makers must strive to ensure that the stigma, which Members have talked about, and the clear discrimination and fear that surround mental health are eliminated or addressed by focusing on promotion, education, prevention and early intervention. Those are the four headlines the BMA puts forward in its suggestions. There is clearly a work force planning problem that, in some occasions, occurs simply because of reductions in staffing levels. There are a number of things we need to do, and perhaps the Minister, when he responds, can tell us how the issue of mental health will work within the staffing restrictions and assure us that that concern will be taken on board.

The Northern Ireland Executive’s programme for government made a commitment to work for a healthier people and identified mental health as a priority. It also set out targets to try to address the issues. The person who suffers from mental health problems is only part of the problem. When a constituent with mental health problems comes to my office, as they do to the offices of other Members, there is not just one person sitting in a chair in front of me, because they are usually accompanied by someone else; there is a family circle, children, mums and dads and everyone involved. While one person might suffer from mental health problems, half a dozen people could be affected by the ripples.

I am also concerned about teenagers who suffer from depression. Between 10% and 20% of our teenagers will suffer from depression at some point in that short period of their life. I believe that there has to be recognition of mental illnesses, notably depression, and it means that we need to look beyond good mental health and at preventing mental health problems and ensuring early intervention. Many personal issues affect mental health, including drink, drugs, working conditions, homelessness, poverty, unemployment and risk-taking behaviour, whether smoking or unsafe sex, and those issues affect many of the people who come to my office with these problems.

Let us address these problems first by strengthening individuals, by addressing emotional resilience and by promoting self-esteem, life skills, coping skills and communication skills. We also have to strengthen communities. Those are the issues I feel are important. That means addressing the issue of social inclusion, improving neighbourhood environments, which make a difference. In relation to teenagers, we also have to try to address the anti-bullying strategies in schools. Those are important because bullying is one of the things that lead to young people having these depression issues.

We also have to reduce the structural barriers to mental health, which means access to education and meaningful employment. I know that that everyone will agree with that, but at the end of the day we need to have a strategy in place to address mental health issues, and that is what we are seeking to do through this debate. We all agree that there is absolutely no doubt that we all support the issue and the vulnerable people affected, people who we meet every day and who need real help.

Suicide in the community is a great worry for us all as elected representatives. Every one of us will have dealt with families, with people whom we know personally or with people from families that we know personally who have lost loved ones—who took their own lives because they felt that there was no way forward. They were coming off the back of terrible depression or terrible pressure, and did not know where they could go next.

[Mr Kevan Jones]

We have been talking about the voluntary sector, and in my constituency there is a very good organisation, which also came about as a result of a personal tragedy for the individual—a woman called Shirley Smith, who runs If U Care Share. Her 19-year-old son died, and it is about young people and talking about those issues. She goes into schools, youth groups and football clubs to do so. Does the hon. Gentleman think we should have a national strategy on that to ensure that it is part of the curriculum as well?

[Jim Shannon]

Yes, I do. When a constituent of mine died in a car accident on a Sunday night, I went to her house on the Monday night, and her father just wanted to speak and to talk about his daughter. That is the issue. On many occasions, it is just a matter of having someone to talk to, someone who can lend a sympathetic ear when it is needed most, so I wholeheartedly agree with the hon. Gentleman on that matter.

Back in 2005, the then Secretary of State for Northern Ireland, who had some responsibility for health, the right hon. Member for St Helens South and Whiston (Mr Woodward), set up a task force to develop a suicide prevention strategy for Northern Ireland. It is paying some dividends in relation to a decrease in the number of suicides, but the number is still at a very high level.

Other Members have touched on dementia and Alzheimer’s, and after wearing my hat as a councillor for 26 years and as an Assembly Member for 12 years, before being privileged to enter this House, I must note that the number of people with Alzheimer’s and dementia is greater today than ever before. I do not know the reasons why, but they are real, the statistics prove it and we have an issue there as well.

On employment support allowance appeals, the hon. Gentleman made an interesting point about those who have mental health issues, because when they go to an ESA appeal the issue is clearly not a physical one, because physically they can walk about, move their hands, brush their hair—if they have any, unlike me—or put a hat on their head. They are asked whether they can do those things, but those are not the questions that a person with mental illness needs to answer. They need to answer the questions, “Are you moody?”, “Do you fall out with people?”, “Are you aggressive?”, “How do you cope with difficult situations?”, “Do you start a task that you cannot finish?” Those are the questions for a person who is depressed, and I agree with the hon. Gentleman, because the appeals panel—the chair and those who deal with such tribunals—need to understand those issues better, so that an appeal can be presented in a way that people understand.

It has been stated that everyone has mental health issues. No one is immune, and although stress is greater among the poor and the unemployed it applies throughout society. Good mental health is crucial to the overall well-being of an individual, of societies and of countries.

In Northern Ireland there are about 150 suicides each year: 41% are single males, and 22% are males between 25 and 34-years old. Some 50% of suicides in the UK involve psychiatric patients, and one reason is a loss of contact; in that context I want to talk about soldiers, about a loss of contact by the health service and about treatment non-compliance, whereby people do not take the medication that doctors give them.

Figures for the United Kingdom as a whole indicate that depression accounts for about 60% of the country’s main health problems, alcoholism about 10%, Alzheimer’s about 8% and severe stress about 6%. That leads me on to that second issue, which is to do with our soldiers.

The week before last I had the opportunity to go to Cyprus with the armed forces parliamentary scheme. Some MPs in the Chamber will be members of that great scheme, some will be aware of it and some will have been members in the past. We have an opportunity to meet soldiers and to hear about strategic issues so that we can present them to the House in an informed and knowledgeable way.

When we were in Cyprus two weeks ago, we noted its importance from an Army and a strategic point of view, but we had not realised that it is halfway to Camp Bastion in Afghanistan. There is a new scheme in Cyprus whereby soldiers returning home from Afghanistan come through a so-called decompression centre in Akrotiri; last year 30,000 did so. They call it decompression because it helps them to unwind after what they have experienced in Afghanistan over the previous few months. The sun is usually shining, which makes a big difference. They have a chance to shower, to have their kit completely dry-cleaned, and to have a good meal. They have access to mobile phones, and they are able to speak to their doctor, padre or commanding officer. They have a chance to get back into normal life—to step down and get themselves ready to go back home to their family. The work done for our soldiers in the Akrotiri centre, which cost £4.5 million to build, gets them ready for life back home.

Those soldiers have seen in Afghanistan the most horrific things that we cannot begin to visualise. They have seen friends and colleagues killed or injured, some with life-changing injuries. We know of those people because we have met some of them, and we are humbled when we do so. The bullets and the bombs are intermingled with the stress, the trauma, the bad memories and the nightmares—those are all part of the things they have to face long after they leave the Army. While the Army, the Royal Navy and the Royal Air Force look after their personnel, the forces associations do likewise. We recognised from our time in Akrotiri, as we have in our constituencies, that once soldiers are out of the Army they are often distanced from those associations too. The Royal British Legion might not always be at hand for them. They might have no friends or their marriage might have split up. They might turn to drink and drugs, but that will give only temporary relief and they are still on their own. I am mindful that defence is not the Minister’s portfolio, but I hope that when he replies he will consider the welfare of our soldiers who have returned from Afghanistan, who are not in the forces any more because they have left or retired, and are now apart from the ritual and discipline that they were once very much part of.

Every one of us will be aware of constituents who have lost control because of the memories and nightmares of what they have seen. Whenever the memories flood back and the flashbacks reappear, they relive what they have come through, and then they face their demons alone. We need to face up to this issue confronting those who have served, and are serving, in the Army, the Navy and the Air Force. The health service needs to address it UK-wide, in England, Wales, Scotland and Northern Ireland. The plight of our soldiers should be a priority for this Government, as I know that it will be. I commend the motion to the House and hope that Members will support it.

Pancreatic Cancer

Jim Shannon Excerpts

Wednesday 23rd May 2012 Westminster Hall

[Eric Ollerenshaw (Lancaster and Fleetwood) (Con)]

Thank you, Mr Scott, for calling me to speak; it is a pleasure to serve under your chairmanship. I am pleased to have secured this debate, as it is on a subject of huge importance to thousands of families across the UK. It is also a subject that is close to my heart.

This debate was originally scheduled for the last week of the previous parliamentary Session. However, the cause of Prorogation it was cancelled, so I am particularly lucky to have been drawn again so quickly. Whether that was because of pure luck or the Speaker’s Panel taking pity on me, I do not know, but I am grateful none the less.

As it happens, the timing for this rescheduled debate could not have been better, because last week we established the all-party group on pancreatic cancer. It is chaired by Lord Patel, the Cross-Bench peer, who has huge experience of the medical profession, and it has a most fantastic treasurer in the hon. Member for Scunthorpe (Nic Dakin), who is here in Westminster Hall today. The all-party group aims to work with Pancreatic Cancer UK, Cancer Research UK and others to increase awareness of pancreatic cancer, and to help campaign for better care and treatments, which will lead to improved outcomes.

The simple fact is that we need better care and treatment. The number of people diagnosed with pancreatic cancer is rising. In 2008, around 8,100 cases were diagnosed—about 22 cases a day. Compared with other types of cancer, those numbers are quite low. However, there is a very poor prognosis in pancreatic cancer cases, with only 3% of patients surviving for five years or more. In my own particular case, my partner survived for only seven weeks after being diagnosed.

Despite advances in technology and improvements in survival rates for other forms of cancer, that figure of 3% has remained unchanged for 40 years, which is quite incredible. There are also wide regional variations in UK survival rates, the so-called and much cited problem of “the postcode lottery”. On a national level, that survival rate—only 3% of pancreatic cancer patients in the UK survive for five years or more—is the worst in the developed world. To put it into context, it is half the survival rate of the US, Australia or Canada. Those countries’ survival rates are obviously still low, but they are much better than the British survival rate.

There have also been reports from people with pancreatic cancer that the care provided in the UK has fallen below expectations. The 2010 NHS national cancer patient experience survey found that pancreatic cancer patients fared significantly worse than patients diagnosed with other cancers. That needs to change. Some things will be easier to rectify than others. For instance, improving the patient experience seems an obvious and relatively easy thing. However, we can and should work on improving awareness, diagnosis, treatment, care and—ultimately and most importantly—the survival rate across the board.

One can look at the impact of the advertising to increase awareness of bowel cancer, which is a difficult cancer to deal with. We are looking to achieve a similar impact in terms of increasing awareness of pancreatic cancer. Increasing awareness is vital, because too often pancreatic cancer is diagnosed at far too late a stage. Although symptoms may have manifested themselves for several months, many people do not visit their doctor until it is too late and the disease is quite advanced. In fact, 50% of pancreatic cancer patients are diagnosed only as a result of an emergency hospital admission and more than 80% of pancreatic cancer patients are diagnosed only once the tumour is inoperable. Those are startling, sobering and depressing statistics.

Let me refer again to my personal situation, in which the pancreatic cancer was diagnosed only after a series of what were just stomach aches, and tests were carried out only after those stomach aches and after a number of visits to the GP.

For the record, the symptoms of pancreatic cancer can be quite vague and varied. They can include weight loss and pain in the stomach, which both appeared in my particular experience of the disease, as well as back pain and jaundice. But if someone does not have any knowledge of the disease—neither I nor my partner had any such knowledge at the time—how would they realise that, because one is feeling tired every day there is something particularly wrong, until the stomach aches develop? Even then, in my personal experience the stomach aches were not significant in terms of pain. We had no awareness that that feeling of tiredness was anything to do with cancer.

We need to ensure that doctors are making the right diagnosis. Nearly 30% of pancreatic cancer patients will have visited their GP five times or more before being properly diagnosed; that was true in my situation. So we need to make sure that GPs are provided with the proper tools and training to recognise the symptoms of pancreatic cancer. Moreover, we need to ensure that GPs are able to refer their patients swiftly to hospitals for further tests when they suspect a case of pancreatic cancer.

As part of that process, Pancreatic Cancer UK is holding an early diagnosis workshop next month. Hopefully, that workshop will help to come up with more concrete actions that could be taken. I understand that the Minister’s colleague, the hon. Member for Sutton and Cheam (Paul Burstow), has agreed to support that workshop, which is an encouraging sign.

Put simply, late diagnosis means that the few treatments available might not be an option, so it is absolutely imperative that we improve awareness and diagnosis.

Let me turn to treatments. The uncomfortable fact is that few options for curative treatments exist. One of the reasons why survival rates for pancreatic cancer are so low, compared with those for other types of cancer, is that pancreatic tumours are relatively highly resistant to chemotherapy. Having said that, I note that Cancer Research UK has said that it believes there is some kind of breakthrough in terms of a new class of drugs, details of which it announced in April; that new class of drugs looks quite promising in terms of being able to improve treatment.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing this debate on a very important issue; every one of us will have constituents who will be affected by it. Does he share my concern—and, I suspect, the concern of many people—that pancreatic cancer is the fifth most deadly cancer in the whole of the UK and yet only about 1% of cancer research is on pancreatic cancer? Also, does he feel that it is now time for the Minister to work with all the regional bodies across the UK—the Scottish Parliament, the Welsh Assembly and the Northern Ireland Assembly—to introduce a UK-wide strategy to reduce deaths from pancreatic cancer?

[Eric Ollerenshaw]

The hon. Gentleman can obviously read minds, because that point about research is in my next paragraph. His other suggestion about a UK-wide strategy is a really interesting and positive one, because pancreatic cancer obviously does not respect any boundaries, or any devolved Government or national Government. So he makes an interesting point, which the all-party group can perhaps consider.

Effective cures for pancreatic cancer remain stubbornly elusive, but we need to try to find ways to prolong patients’ lives and to ease their pain and suffering, while always remembering that, with cancer, it is not only the patient who is affected but the people around them, including their family. Cancer affects not just one person; its effect spreads to other people. I had not entered the cancer world before my own personal experience—I call it a separate world, because it is like entering a separate universe that has never been experienced before. Patients’ loved ones also experience suffering.

NHS (Foreign Nationals)

Jim Shannon Excerpts

Tuesday 22nd May 2012 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Kingswood (Chris Skidmore) on securing this debate. He tried hard to keep a balance—it is important for us to do so—as did the hon. Member for Ealing, Southall (Mr Sharma) during his interventions. However, whenever I read the background information, I cannot but feel shocked. On 3 May, an article in The Daily Telegraph on the foreign national debt stated that official figures suggest that

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

and that freedom of information requests showed that

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

The article went on to note the doctors’ trade magazine Pulse’s claim:

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

Those are worrying figures. The article continued:

“The FoI requests showed St George’s Healthcare Trust in South London had the largest outstanding debts, totalling £2 million from £3.55 million invoiced to foreign nationals for health treatment from April 2009.”

Everyone present is proud of our NHS and of the high esteem in which it is held, not only in this country, but throughout the world. I do not want to be a scaremonger. I want to keep my comments balanced. It is not in my nature to stir up angst or discontent. As the hon. Member for Kingswood has mentioned, we do not want xenophobia or discrimination, but the figures are unsettling and there are concerns that our health system is being taken advantage of by some people, which is to the detriment of British people who are waiting to be seen and receive treatment.

Anyone who knows me either inside or outside this Chamber will know that I often put my hand in my pocket to help those in Africa, India and other parts of the world. The same is true of other Members and of our great nation, because we are a nation of givers. Our charity contributions in a time of economic restraint are still above the norm—we are holding our own. In Northern Ireland in particular, our charity giving per head of population is second to none. I am all for international development and believe that we as a nation have a role to play in helping others who need it. The UK makes a significant contribution to third world aid, and we continue to do so—our commitment is to give—while other countries are cutting back. We as a nation are making a significant contribution and will continue to do so. I and other Members support the Government entirely on that issue.

I am also a constituency man and know that people are becoming discouraged. I am conscious that I am speaking as a Northern Ireland MP and that health is a devolved matter. Cancer patients talk to me about new treatments that cannot be paid for on the NHS because of lack of funding. I have asked questions on the Floor of the House about whether new treatment will be made available for those constituents of mine who clearly need it. In the past few days, we have heard on the news about the postcode lottery—that terminology is often used—whereby the treatment depends on the funds available where someone lives and the demands on the system. That is not necessarily a criticism—it is a fact of life. My constituents deserve to have the best treatment in the world and I will work as hard as I can to ensure that that happens.

The fact that £40 million is owed by some foreign nationals needs to be addressed. The Minister and the Home Office have indicated that they intend to introduce a £1,000 threshold to

“capture 94 per cent of outstanding charges owed to the NHS.”

I hope that that will be the case.

I hear that people now believe that we have a lax system. Again, we need to keep a balance. We cannot provide a world health service—it just cannot be done; the moneys are not there. We need to draw the line, and I believe that we should draw it in this place and that it should be a straight, firm line. Will the Minister indicate whether there will be a review or a reassessment of the six-month visa that allows GP registration and access to NHS care? That needs to be clarified, so that we can see where we are going.

There is a clear difference, as the hon. Member for Ealing, Southall has mentioned, between those who are taken ill on holiday and those who come here directly to take advantage of our health system. Again, it is about balance.

I have been encouraged to hear the Government’s proposals, but as a Northern Ireland MP I am concerned about whether they will make their way over to Northern Ireland. I will chat with my colleagues at home to ensure that we implement like-for-like proposals. Health is a devolved matter in Northern Ireland and the Health Minister is a member of my party. I will certainly have some discussions with him. The hon. Member for Kingswood has touched on this issue, but will the Minister explain what interaction there will be with the regional Assemblies—the Scottish Parliament, the Welsh Assembly and the Northern Ireland Assembly—so that we have a UK-wide policy? It is important that all of the devolved Administrations have a similar policy to that on the mainland in England.

There are so many people in need of our health system at home that if we were to take in every sick person who was able to travel to the UK, it would not take a week until we imploded because of the demands on our system. We have to be realistic about what is expected of us and how we can help others. It about getting the balance right. The NHS is our national health service and one into which we have paid over many years through our tax system.

I had the privilege—some would say that it was not a privilege—of serving on the Health and Social Care Bill Committee, on which both Government and Opposition Members discussed the figures and tried to devise a reorganisation that would save money and still provide a good service. As well as delivering what is best for our citizens in the United Kingdom, it is important that we are able to help those who need it and who come here not with any specific intention to take advantage of the NHS, but who find themselves in need of it due to ill health. Any of us can be taken ill on holiday, so we take out insurance, which covers us for so much. It does not cover for circumstances in which ill health might result in a longer stay than anticipated, but it does help part of the way.

Some have taken advantage of the system. The Government are right to tighten the system and to ensure that there is a good NHS for the whole of the United Kingdom. The hon. Member for Kingswood referred to the term “health tourism”, which others have used and which sends out signals. Whether that term is correct or not, some people are doing it. We need to make sure that we have a system that can help those when they need it. We are a caring nation—we do not want to turn people away—but our system needs to ensure that that is done correctly. As I have said, this is all about balance. It is about ensuring that we, as a caring nation, can offer help to those who need it. No one who needs help should be turned away—that is clearly where I am coming from—but at the same time we need to tighten the criteria, close loopholes and at least ensure that the £40 million drain on NHS care is restricted or comes to an end.

--- Later in debate ---

[Anne Milton]

It will bring the focus closer to home. I would expect the shadow Minister to welcome this change, because GPs will now be much more acutely aware that registration with them should not automatically entitle people to NHS acute trust care. We are undertaking a review that I will mention in my concluding remarks. It is early days in respect of the UK Border Agency and the change in the immigration rules, so we do not have sufficient information adequately to evaluate how effective they are, but I think that we will see a significant impact. The shadow Minister asked specifically about the Olympics.

[Jim Shannon]

The Minister said that £14 million in debts was written off by the Government. Do the Government contact the countries that people have come from to try to recover some of those debts, or is it too costly administratively to do that? Is it cheaper to write off debts than to chase them up?

[Anne Milton]

That is true of all debts. Trusts are not always aware of the rules and the obligations placed on them. Sometimes, they do not have the infrastructure in place to chase such debts and sometimes the costs of chasing debts are greater than the debts themselves, so they write them off. Either way, it is clearly not fair on the taxpayer. West Middlesex is an exemplar. We in the NHS are not good at sharing best practice, but practice at West Middlesex should be spread more widely.

Back in 2005, when the Labour Government were in power, as part of the UK’s successful bid for the 2012 Olympics they committed to provide games family members with free medical care. The games family is a tightly defined group of people—athletes and their support teams, officials, accredited media and IOC members—who are directly involved in taking part in or supporting the games. We have introduced a specific exemption for those people in respect of hospital treatment that might otherwise be chargeable, which will last for only nine weeks around the time of the Games and will be limited to treatment, the need for which arises here, so pre-planned or routine ongoing treatment that can wait will not be free. Normal charging rules will apply to all other visitors, including those coming to see the games.

The NHS has been briefed to be particularly vigilant in screening visitors who seek treatment and in applying the charging rules, given the large influx of visitors to the country. Let me reassure the residents of Hackney—the shadow Minister rightly said that Homerton is one of the designated hospitals—that treatment will be given on the basis of need. Local people should not suffer at all as a result of these rules which, as the shadow Minister will be aware, were an important part of the previous Government’s bid.

My hon. Friend has mentioned some of the details of our review. It is important that there should be qualifying criteria, a full range of other criteria exempting services or visitors from charges, and criteria for charging for services outside hospital, as we move towards more care being delivered outside hospitals. We need to be mindful of costs that could be incurred, thereby ensuring that we have more efficient and effective processes throughout the NHS, including the ability to screen eligibility. Let me reassure the hon. Member for Strangford (Jim Shannon) that it is important that we work closely with the devolved Administrations, and have close discussions with them, to ensure that there are not unforeseen and unintended consequences.

Once again I thank my hon. Friend the Member for Kingswood for introducing the debate, and I thank hon. Members for the balanced, moderate nature of the discussion. It is important that we set an example—all parties desire to do so—and demonstrate to the public that such difficult issues, which can involve distinct communities, can be discussed and considered in a fair and balanced way and are matters of cross-party concern, with all political parties working together. It is not becoming for any politician to score party political points on an issue of such fundamental importance to the taxpayers of this country.

Rare Disease Strategy

Jim Shannon Excerpts

Monday 30th April 2012 Commons Chamber

[Mr Edward Timpson (Crewe and Nantwich) (Con)]

As ever, I am grateful, and indeed delighted, to have the opportunity to address the House in this timely and much-needed debate. Just eight days ago, along with 37,000 other hardy souls, I stood, full of trepidation and excitement, at the start line for the 2012 London marathon. I was running with my wife, Julia, and am pleased to report that we finished the course together in just under four hours. Far more importantly, our run raised over £6,000 for the national charity CLIMB.

That is all very interesting, you might say, Mr Deputy Speaker, but what has this rare accomplishment for a Member of Parliament got to do with a rare disease strategy for the UK? To explain, CLIMB stands for “children living with inherited metabolic diseases” and is a charity based in Crewe in my constituency. It is one of an important network of rare disease charities that strive to raise awareness of rare diseases, not least through Rare Disease day, which takes place on the last day of February each year. Under the stewardship of Steve Hannigan, CLIMB provides vital advice and support to many children and families affected by one of the around 730 known metabolic diseases. One of those children is my nephew Leo.

Leo was born in 2001 with an inherited metabolic disease known as MCADD. Approximately one in 10,000 babies born in the UK has MCADD, which means that they are missing an enzyme that helps break down the fats that provide energy for the body, particularly after long periods without food. This inability to break down fat leads to the build-up of medium-chain fats that can produce toxic substances and lead to severe symptoms, including seizures and possibly coma and death. As Leo was born before the introduction of routine baby screening for MCADD in 2008, neither medical professionals nor his parents knew that he had the disease.

For Leo, all was well until he was 10 months old, when he contracted pneumonia that was coupled with three days of severe hypoglycaemic episodes. Because the knowledge of rare diseases among medical staff was and, indeed, remains limited, and because he had not been screened for MCADD, no one picked up on this underlying rare condition and the need to treat him accordingly. More by luck than by informed professional judgment, thankfully Leo survived.

When Leo suffered a further hypo episode at 14 months, triggered by nothing more than a routine cold, the doctor on duty, who had some knowledge of MCADD, realised that his low blood sugar was unexplained, and subsequent relevant tests revealed a diagnosis of the metabolic disease.

Leo is now 11 and living a full and active life, but, with the mortality rate of children under the age of one who have undiagnosed MCADD being approximately 25%, the routine screening that CLIMB long campaigned for, and which is soon to be introduced throughout all four nations of the UK, is a vital tool in saving lives.

In the past year alone, more than 80 newborn babies have been diagnosed with MCADD—80 babies whose disease would otherwise have remained undetected and who would have been at significant risk. That is why I wanted this debate: to be able to speak up for all those, like Leo, with a rare disease, to put a proposition to the Minister and to question him about, how we can improve the services, information, treatment and support that those with rare diseases receive in order to ensure that we maximise their quality of life.

We are not talking about a handful of isolated cases. With close to 7,000 distinct rare diseases having been discovered, and with five new diseases described every week in medical literature, rare diseases are collectively far from rare. In the UK it is estimated that 3.5 million people, or one in 17, will be affected by a rare disease at some point in their life, with 30% of patients dying before their fifth birthday.

So what is a rare disease? The European commission on public health defines rare diseases, sometimes known as “orphan diseases”, as

“life-threatening or chronically debilitating diseases which are of such low prevalence”—

affecting fewer than one in 2,000 people—

“that special combined efforts are needed to address them.”

About 80% are genetic in origin, but many are auto-immune, such as Crohn’s disease, and others are infectious in nature.

Motor neurone disease, cystic fibrosis, muscular dystrophy and Huntington’s disease may be some of the more widely known rare diseases, whereas acquired non-histamine induced angiodema and Adair-Dighton syndrome are just two of the many thousands of others that I have come across in my own research.

[Jim Shannon (Strangford) (DUP)]

One rare disease that I am aware of is Prader-Willi syndrome, which affects the muscular build-up, eating habits and sleep patterns of some 2,000 people in the United Kingdom and 50 people in Northern Ireland. Does the hon. Gentleman feel that, if there is to be a strategy for the United Kingdom, it must involve all those regions where health matters are devolved to the Administration? Does he feel also that along with such a strategy and, given all the different areas that there are, we need to have something for respite care, because parents, and the way in which they play their part, are vital?

[Mr Timpson]

I am grateful to the hon. Gentleman for raising a particular issue in his constituency in Northern Ireland. He is absolutely right that we need to ensure that the strategy we develop for rare diseases supports not just those who suffer from the disease, but the families who every day, for every hour, have to cope with it and support them. We need to ensure that that is a central part of the strategy.

Such diseases—especially those, including the one to which the hon. Member for Strangford (Jim Shannon) refers, that are particularly rare—are no less important, however, and therein lies the problem. Most rare diseases are under the medical and public radar—too exceptional to attract the attention, recognition and resources required and, above all, the coherent plan needed to tackle the fragmented, inefficient and often inequitable services on offer.

That is why I welcome the Government’s current consultation on the development of a UK strategy for rare diseases and why this debate is so apt. For too long, rare diseases have been placed in the “too difficult to do” pile, but with the onset of changes to health care commissioning and the refocus on putting patients at the heart of the NHS, there is a real opportunity to do things more effectively and much smarter. That means that the consultation must be ambitious, provide strong leadership, and be unambiguous about how the core vision that it reveals can be successfully implemented practically and realistically on the ground across all four home nations.

I have taken the time to read the consultation document, and although it makes many of the right noises, there is a nagging doubt as to whether it meets all the challenges faced by those with rare diseases. I am told by those working in the field of rare diseases that Lord Howe, the Minister who, together with his colleagues in the devolved nations, is responsible for the document, genuinely appears to understand the importance of getting this right. I trust, therefore, that he and they will listen carefully to the submissions they receive, including mine this evening and those of other hon. Members.

So what needs improving? It is clear from my many conversations and my correspondence with clinicians, patient groups and charities working on and living with rare diseases that the ad-hoc nature in which services have developed has led to the principal problems of delays in diagnosis; misdiagnosis; lack of information, communication and awareness; limited research; scarce and unequal access to orphan medicines; poor commissioning and care co-ordination; and a failure to monitor outcomes.

That is not to say that it is all bad news. There is, as ever, some fantastic best practice already taking place. The TREAT-NMD—Translational Research in Europe: Assessment and Treatment of Neuromuscular Diseases—network for neuromuscular diseases, the European Huntington’s Disease Network’s REGISTRY, and the Tay Sachs walk-in clinic at Guy’s hospital are all good examples of innovative, effective and efficient service delivery on which any strategy should seek to build.

Selective Dorsal Rhizotomy

Jim Shannon Excerpts

Wednesday 18th April 2012 Commons Chamber

[Chris Heaton-Harris]

I happily commend their work. I have met Dana and her mother—a very powerful lady who has fought hard for her daughter’s rights and saved a lot of money so that she could have the procedure.

To return to the diary:

“Just these last couple of days she has started to learn to run. Prior to SDR her running technique was no faster than my normal walking pace and she had a swing to her hips that made it look like she would trip at any moment. I now need to walk very fast and sometimes even jog to keep up with her run and she has less swinging of the hips. She is still a long way off the speed and ability of her friends when it comes to running but she is definitely getting better at it.”

The next point is very important:

“Holly has also grown in confidence. She speaks out at school, joins in with activities more and is a nightmare at the park. She climbs up climbing frames that even her 7 year old sister would be wary over. It really is hard to believe that without the operation she would not be able to do these things.”

[Jim Shannon (Strangford) (DUP)]

I am very pleased about the successful outcomes for the hon. Gentleman’s constituent and for the constituent of the right hon. Member for Carshalton and Wallington (Tom Brake). Billy Douglas is three years old and lives in the village of Ballygowan in my constituency. Unfortunately, he has not yet had the operation but is trying to get it. Does the hon. Gentleman agree that it is not just a question of the operation, but the physiotherapy as well? It is a nine-month process and it is very important. Does he think that the NHS ought to make provision not only for the operation but for the physiotherapy? Families are asked to provide £50,000 for the operation and the physiotherapy, but that is beyond the budget of many people. Even with fundraising events it is almost impossible to reach that amount unless the Government or the NHS are prepared to help. Does he agree that we need compassion and financial help for many families across the whole United Kingdom?

[Chris Heaton-Harris]

I absolutely concur. Indeed the final paragraph I wanted to read from “Holly’s Diary” states:

“Finally—we are continuing with Holly’s strict physio programme. She has 1 hour a week from the NHS and we pay privately for a further 2 hours a week from different therapists.”

As we have just heard, for the best results from SDR the operation must be followed by intensive physiotherapy. As an aside, one thing that all the parents who have raised the money for their child’s operation have in common is the basic lack of interest in the patient from the NHS when they return home from abroad, especially when they try to get regular physiotherapy to ensure that their children benefit from the operation to the maximum extent possible. Essentially, the more physio a patient receives in the first years after the operation, the greater the level of ongoing success and the level of manoeuvrability in the patient. Can the Minister help to remedy the situation?