Vaccine Damage Payments Act

Jim Shannon Excerpts

Tuesday 24th March 2015 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Member for Dumfries and Galloway (Mr Brown) for setting the scene. He spoke passionately and told us why we need to do better. He said, “Is there a better way to do this?” and I wrote down, “I think there is.” This debate will perhaps give us a chance to have an idea of how we can do better. He and the hon. Member for Worsley and Eccles South (Barbara Keeley) illustrated where the system falls down and how we can improve it. I would like to do something along those lines as well.

It is of utmost importance for us to reflect upon this issue once more, as the quality of innocent individuals’ lives are at stake. We vaccinate to prevent illness, to protect the most vulnerable in our societies and to protect those we care about, whether they are our family, children or constituents. It is very unfortunate when good intentions do not result in their intended outcome, which is to protect and not harm. Unfortunately, harm is what can occur. The contributions so far have shown that harm has taken place. We need to learn how best to deal with that and how Government could respond in a more generous manner.

Although such tragedies are thankfully rare, it is a reality for the few who are affected and we must take responsibility for dealing with the outcomes of vaccination damage. We must take account of individuals who have become severely disabled when they may otherwise have led a healthy life without the burdens of their condition, because of a vaccination that was believed to be medically safe. We must think of their well-being. We must also take account of those who, through their work, found it necessary to have vaccinations, resulting in effects that they had not foreseen.

It is a difficult thought to come to terms with. Affected individuals could not have imagined that these vaccinations would lead to their living with debilitating conditions. We must do our best to aid those families and individuals to deal with the burden as best they can in the circumstances and with the everyday realities that they have to face. We must investigate why, out of 1,483 claims made between 1 January 2000 and 31 December 2010 to the vaccine damage payments unit, only 26 have resulted in an award. Why is that? Something must be wrong with the system. Either it is too complex, or the delays are too long, or the questions that are asked are difficult to answer. The system needs to be looked at.

We need to reform the Vaccine Damage Payments Act. It is too outdated to deal with the financial and practical realities of living with the adverse effects of a vaccination, and too outdated to recognise that there is a spectrum of difficulties that those affected face, not only those above the 60% threshold. That is also an issue. The hon. Member for Dumfries and Galloway talked about the 60% threshold, which almost debars people. I always feel that we as parliamentarians are here to help those who need help. We must do it in a good way and make it simple and easy for them to find help. Today’s debate gives us a chance to try to chart a way forward that is easier for individuals to deal with.

The Vaccine Damage Payments Act provides an opportunity to apply for a one-off £120,000 lump sum to meet the burdens of coping with a disability. Whether this is to assist the person who has become disabled as a result of a vaccination, or the family who cares for the person, there are costs to be met. These are costs that individuals and their families would not have foreseen, caused by the adverse reaction to a vaccination that requires them to be met. To be eligible for such a scheme, the individual must be over two years old and must apply within six years of vaccination, or up until their 21st birthday, whichever is the later. This means that if the adverse reaction results in death, but the victim is less than two years old, nothing can be awarded to the parents. That discrepancy must be addressed. Furthermore, it leaves carers to pay independently for the care that is needed until the claimant is eligible at the age of two. The rules simply do not deal with the emotional realities of such situations.

We cannot always mark a family’s problems solely on physical issues. There is the emotional trauma that the family and their relations go through as well. What is even more striking is that not all those affected by vaccination damage are recognised in the current legislation as requiring financial assistance. The requirement that a person has to be 60% disabled to be eligible for a single amount of £120,000 is a very hard and fast rule, and cuts out others who are vulnerable and need compensation to deal with the difficulties that disability brings. To be 60% disabled, or above, has a profound impact on a person’s life, reinforcing that we must change how we deal with payments to those affected. It seems too absolute to have a 60% cut-off when we come to a situation in which a victim may fall below this figure, yet be affected in their life. They can be greatly affected, but, because of the eligibility criteria, not entitled to any assistance.

A range of degrees of disablement can affect an individual’s life and irreparably alter it. For that reason, reform needs to look at assisting all those who have been affected in different ways through vaccination damage, and as a result deviate from the standard fixed sum given on a sliding scale. I hope that the Minister’s response will give an idea of how those suffering as a result of the vaccine can be given better financial assistance.

As has been pointed out on a number of occasions, including in the work of the all-party group, the provisions to deal with adult cases are poor. It would be appropriate for the 1979 Act to be applied more comprehensively to adult cases. The requirement that vaccination must occur before a victim’s 18th birthday, apart from in the exceptions outlined in the Act, means that the scheme’s adult application is far from lucid. There are workers whose jobs mean they must be vaccinated to deal with the dangers of their workplace. Hepatitis B is one such vaccination, but it is not included in the Act. Is it proposed that it should be included? It is important to consider that question.

The workers most affected are doctors, nurses and social workers, but members of other similar professions that revolve around a duty of care are in a similar situation. Those people, in aspiring to fulfil the requirements of their job, have availed themselves of vaccines and that has resulted in their being left without livelihood or career, and with a quality of life that is not as it was before.

The question of access to life-saving or life-changing drugs has also been on my mind, and other hon. Members have touched on it. There was an example in the debate pack of a family who had to leave England for the States to qualify for drugs, which they got free there. I presume that that was because they would also be part of a testing scheme. The drugs greatly improved the child’s life. They moved to California to qualify for drugs that they could not get here, because they cost too much. The Minister and I have previously talked about drugs for cancer sufferers, and so on. I suppose more is possible with a large budget, but I think that something must be done about improving the availability of drugs.

The legislation often makes adult payouts subject to the industrial injuries schemes, with the result that the compensation often cannot come close to what is required to meet the financial challenges of the affected person. We must remember that it is not financial considerations that are at stake, but rather recompense for loss of a career and personal independence, and a reduction in quality of life. I am inclined to argue that those victims should be equally able to obtain the £120,000 payout through the Government’s vaccine damage payment scheme. There is a clear need for hepatitis B to be covered by the legislation.

Although I have spoken of the £120,000 figure and argued for it to be extended to a wider range of cases, that is not to say that the sum is adequate; it is almost speculative in relation to the life expectancy of individuals eligible to meet the requirements of the scheme. That is wrong. We should be doing all we can to extend and make easier the lives of those affected, by giving higher levels of financial support. The fact is that the costs of caring for someone with a disability are high, and in the case of a child the sum offered will not span a lifetime’s care, so families can be left to struggle when money becomes stretched and the pressure is on. Adult cases also involve personal livelihood if the disability becomes debilitating. Inadequate and unrealistic payouts or failure to be compensated at all can make financial considerations an added concern in an already stressful and emotive situation.

Is there a better way? I suggest there is, and I urge the Minister to review the matter.

Women Entrepreneurs

Jim Shannon Excerpts

Wednesday 18th March 2015 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate, which I thank the hon. Member for Feltham and Heston (Seema Malhotra) for securing. I note that my party, the Democratic Unionist party, has the most Members in this debate. I am sure that is not a reflection on the other parties’ interest in this matter, and I am sure everyone would be down here if they did not have other things to do. Those of us who are here underline the importance of supporting women entrepreneurs.

I recently read an article on nibusinessinfo.co.uk stating that:

“If as many women as men were thinking of setting up a business in Northern Ireland we would have over 28,000 more entrepreneurs.”

To put that in perspective, if it created 28,000 new jobs—it would probably create more—there could in theory be zero unemployment in Northern Ireland. That is a possibility, and it would have a dramatic and positive effect on the local economy. That idea is not far-fetched. We must encourage ladies in Northern Ireland to be entrepreneurs, and we must ensure that they have a chance to do so. The article continues:

“The Global Entrepreneurship Monitor (GEM) report shows that women in Northern Ireland have a very positive view of entrepreneurship as a career choice.”

Entrepreneurship is not alien to women in Northern Ireland. They do not find entrepreneurship strange; they want to sign up to it.

“The report indicates that increasing the level of entrepreneurial activity among women will make a huge contribution to the diversity and success of the local economy.”

The Library debate pack has made me aware of one negative. It refers to:

“better support structures for women—think mentorship and networking”.

On the other hand, there is a problem with such an approach. If women are not starting businesses because they lack the confidence to do so, singling them out as a group in need of special treatment risks undermining that confidence even further. So there is a negative, and there needs to be a balance. At a women’s networking event at Middlesbrough football club in 2000, one of the award winners was south Wales-based Christine Atkinson, who said:

“Lack of confidence is so pervasive.”

Again, we cannot ignore that.

[David Simpson]

I am sure my hon. Friend will agree that the retail sector in the United Kingdom is vastly run by females. Within the commercial industry, there has to be opportunity as well.

[Jim Shannon]

I thank my hon. Friend for that intervention. His business expertise is good for this Chamber and for the House. He will not mind my saying this, but a part of his success is his wife. I mean that genuinely. My hon. Friend and his wife have a business partnership and they both work equally hard. The success of that business is due to the efforts of both of them. He and I know that, and his wife knows that as well.

When women take it upon themselves to launch businesses, often it is to beat the high cost of child care. Perhaps the Minister will address that issue. Child care costs are a big factor in whether ladies are able to start their businesses and move forward.

It is always good to give an example. A retired lady comes to my office. She does craft work and makes bits and bobs to help to raise money for orphan projects in Africa. I am amazed at her ingenuity at times. For example—my colleagues will know this—I am apt to give out business cards. As Members will know, they come in wee plastic boxes. Given the amount of business cards that I have given out over the past five years—and long before that—there are a lot of those wee plastic boxes. She has turned those wee boxes into memory boxes and she fills them with little cards with a poem on them or a thought for the day. She does that for her Elim church mission to raise money for Africa. She has used her skills as an entrepreneur and her skills in crafts to create a business of sorts. If that did not come under charitable purposes, I have every certainty that she could make enough money to live on with all the crafts and things that she sells. That is what an entrepreneur does—that is what it is all about—and that is a lovely example of what can happen.

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

Does my hon. Friend agree that whenever there is a successful woman locally in business, quite often she is perceived and projected in the local press as achieving success against the odds in an uphill struggle? It is almost a perception that the woman is not a natural fit within a particular system, rather than giving encouragement that this is an automatic thing. It ought to be a natural phenomenon, rather than something that is the exception. It should become the rule and the norm.

[Jim Shannon]

My hon. Friend is absolutely right. It should not be something that happens against the norm, but naturally. We welcome every business start-up, and we want to ensure that women do not feel out of place by starting a business.

The reign of the internet is now allowing more women to use their skills in a way that will benefit them. It is not simply men who are now suiting themselves with their working hours and flexible dot.com businesses. One need only look at Facebook to see how people use that medium to display their abilities. We can have anything personalised and sent almost overnight by those who choose to make the best of their time on the internet. There are many possibilities and opportunities. This is entrepreneurship at its best.

I recently met a man and a woman who own a few clothing shops in my constituency and in the neighbouring constituency. They realised that the potential for online shopping was within their grasp and expanded to include that. A business that had a turnover of £3,000 in its first few months will this year have a turnover of £1 million in online sales. That gives us an idea of the possibilities that there are. We had a meeting this week with the Department of Enterprise, Trade and Investment, and we want DETI and BT to ensure that better broadband is available for shops to make the work a lot easier. The fact is that those people saw an opportunity and took it, and we need to encourage more women—and men—to take such opportunities.

In Northern Ireland, the average age for a female entrepreneur is late 30s. The hon. Member for Feltham and Heston referred to that figure in her introduction, but anyone of any age can be an entrepreneur. Opportunities should be there earlier. Many women work part time while setting up a business, which gives them the chance to develop their business idea, while reducing the financial risk that may be involved. Others work flexible hours in their new business to allow them to look after a home or to fulfil other commitments while getting their business off the ground. Sometimes women have to care for elderly parents or their partners or children. We need to help people who have caring responsibilities.

[Seema Malhotra]

The hon. Gentleman is making a powerful point about older women coming into entrepreneurship. There is no age barrier and someone can start a business when younger or when circumstances are different, but then need to accelerate later. Does he support my call for a more integrated approach to supporting women’s entrepreneurship, which has the backing and support of a range of different Departments where they may have different ways of interfacing with women’s lives?

[Jim Shannon]

I could not have said it better myself. I thank the hon. Lady for that intervention. Clearly, we need all Government bodies to work together to encourage people at whatever age they decide to start a business, whatever the reasons for starting at the time they started, and whether they are caring for a disabled relative or have family responsibilities. Whatever time they start a business, let us encourage them.

The opportunities are endless and it is clear that help and support should be given by the Government to allow people to understand how best they can begin a new business. In Northern Ireland, Invest Northern Ireland, in partnership with the Department of Enterprise, Trade and Investment, has help available. Indeed, it has a mentor programme. Perhaps the Minister and shadow Minister will say whether there is a mentor programme here in the UK mainland. If not, may I suggest they look at what Invest NI and DETI are doing in Northern Ireland? New starts are helped. There is a Training for Women website that has useful courses and guidance, and a lot of other help available.

Women into Business is Northern Ireland’s premier business women’s programme aimed at encouraging and supporting the progression of women hoping to enter or re-enter the workplace through employment or self-employment. Women in Business NI—WIBNI—is Northern Ireland’s largest and fastest-growing network for business women and entrepreneurs. WIBNI has more than 1,000 members and offers events aimed at helping women develop both personally and professionally, and to make connections and ultimately grow their business. WIBNI also offers a variety of free marketing benefits to all members, including publication of their news articles in a quarterly and a monthly magazine.

DETI and Invest Northern Ireland have worked out a strategy to encourage women in business and entrepreneurs in Northern Ireland. My hon. Friend the Member for Upper Bann (David Simpson) mentioned the importance of further education colleges. We see lots of good students coming through and taking up courses. The South Eastern Regional College does tremendous work in Newtownards and in my constituency, Strangford. It encourages young people when it comes to business start-ups and ideas, and helps to move them along the way. There are as many young girls and young women as there are young men involved in that college and those courses, and it is good to underline that as well.

There is an onus on the Government to offer help; more help can and should be offered. Again, I congratulate the hon. Member for Feltham and Heston on raising this issue today and on highlighting the great work that has been done, and the fact that there is the potential for so much more to be done, if only more support were offered.

It must be remembered that the greater the success of new businesses, the greater the benefit to the local economy and to the country as a whole. So, whether a woman wishes to create her own business at home, or open a shop, or indeed five shops or 10 shops—whatever their potential dream or wish may be—the advice and support must exist to help them do so. And the onus is on those of us in this place and in Northern Ireland, where this matter is a devolved one, to ensure that that advice and support are provided.

[Stella Creasy (Walthamstow) (Lab/Co-op)]

It is a pleasure to serve under your erudite chairmanship and beady eye this morning, Mr Robertson; you will ensure that all of us are well-served this morning.

I congratulate my hon. Friend the Member for Feltham and Heston (Seema Malhotra) on securing this debate. I know that this is a subject she is really passionate about. She has done a lot of research on it, which really shows in the insight she offers into it and the things that we can do about it.

I also want to put on record my interest in and support for the fact that there are a number of MPs here. May I venture to say to the hon. Member for Upper Bann (David Simpson), who sadly has now left Westminster Hall—

[Jim Shannon]

He will be back.

[Stella Creasy]

I am pleased that the hon. Gentleman will be back, because it is good to see male MPs supporting the idea that there is a gender gap that needs to be addressed. However, may I venture to say that that is not necessarily a concern because of his wife but because when 51% of the population are not fully utilised it is a concern for us all that we are missing out on the contribution that they could make? Frankly, sorting this issue out would help a lot of men, because it would help our economy, and therefore it perhaps has less to do with his wife and more to do with his constituents. It is because of them that he should be concerned about why we have such a gender gap. In particular, my hon. Friend set out well the particular gender gap that we see in the UK, because the situation is not the same in other countries, which should be very telling about what we can do in this country to address these issues.

A number of Members have already pointed out that there would be many more businesses if women were starting up businesses at the same rate as men. However, it is worth considering the situation in other countries. It is not only America that has a higher level of female entrepreneurship than the UK but countries around the world. Therefore, there is something happening in the UK. It is also worth noting that we have a higher rate of churn in the UK, so even when women start up businesses here they are failing more often than in other countries. Women entrepreneurs here are also less likely than elsewhere to attribute the closure of their business to business failure and more likely to cite personal reasons as one of the reasons why their businesses were not successful.

Why does this issue matter to us all? It is because equalising the labour market participation rates of men and women would boost the UK economy by an average 0.5 percentage points every year, with a potential gain of 10% of GDP by 2030. Given the recession that we have just gone through and given the fact that our recovery appears to be beginning to slow, getting more women into business and into leading more businesses would clearly make a tremendous difference to us all and our future economic position. Indeed, the Royal Bank of Scotland has calculated that boosting female entrepreneurship could deliver an extra £60 billion to the UK economy.

--- Later in debate ---

[Stella Creasy]

Again, my hon. Friend shows her experience in this area. What we are certainly seeing is that women who start businesses tend to bring forward new products, as opposed to men who start businesses, who tend to bring forward competitor products. So women are certainly driving innovation.

My point in referring to the online economy is to set on the record that Labour thinks this issue is less about women bringing their previous experience of purchasing to business so much as their ability to use the opportunity that online behaviour offers to open up markets to people. When someone is bringing a new creative product to the market, having a window that sells to millions of people rather than perhaps having a window just in their local high street opens up the potential for greater success, and it is important that we consider that and ask ourselves how, for example, we can support more women to learn skills, such as coding, to be able to sell online.

A number of Members today have obviously focused on women themselves and what might be stopping them from getting into business. Certainly, one of the issues that people have come up with is child care. So let us be very clear that there probably is an issue around child care and helping women to be able to juggle, which suggests men are holding women back, because, after all, it takes two to have a baby. One thing that I would be interested to hear the Minister’s view on is how we can make men hold up their part of the bargain in looking after children, so that their wives can be the successful entrepreneurs that they want to be.

Labour’s child care proposals will probably help a lot of women entrepreneurs. For example, there is our proposal to increase the number of hours of free child care that are available. With child care costs rising by up to 30%, there could be many parents—for example, the women who want to be the next Anita Roddick or Laura Tenison—who find their ability to be entrepreneurial being hampered as a result of this Government, because they find they cannot afford the child care necessary for them to spend the time setting up a business.

Today, therefore, I will set out four areas that I would like to hear the Government’s response about. They are less to do with women and more to do with the environment that we are asking women entrepreneurs to enter.













First, hon. Members talked about finance. Clearly, finance matters. The evidence shows us that women start businesses undercapitalised, and with not just less finance, but fewer human resources and less social capital. That puts them at a disadvantage by comparison with their male counterparts. Not having the same level of resource is a factor in respect of confidence and risk-aversion among female entrepreneurs. It is important to say that it is not always a bad thing that women are risk-averse, but we should recognise it when they do not have the same resources, and so cannot take the same risks, as their male counterparts. We must consider how to ensure that they have access to more resources, rather than encouraging them to take more risks, and we should recognise that their lack of confidence may not be misplaced and that they might not have the resources to succeed.

How much of a barrier is finance? Some 10% of female entrepreneurs say that access to finance is their only barrier to entrepreneurship, and that it is a particular challenge in respect of expanding in the way they would like to. Again, that appears to be a bigger problem in the UK than in other countries, particularly in Europe. Women in Europe are much more likely to be able to access finance to start and run their businesses than their UK counterparts. Some 20% of women in the UK have tried to get money to start a business but have been turned down, compared with only 11% of European female entrepreneurs.

My hon. Friend talked about the Aspire fund, which was set up in 2008 to try to deal with this challenge and ensure that there was a dedicated pot of money to support women in business. As she said, as of last year only £4.7 million of the £12 million had been invested. It is worth comparing that with other forms of start-up finance backed by the Government to see what the difference is. For example, in the same period, the enterprise finance guarantee scheme, set up to provide assistance to small businesses with an annual turnover of less than £41 million, has offered £2.6 billion, and £2.3 billion has been drawn down. The regional growth fund, which matches private finance with public assistance, has awarded £2.6 billion, of which £1.15 billion has been drawn down. There is a differential. It would be interesting to hear the Minister’s view on why the Aspire fund has not been as successful in promoting and supporting women’s businesses as some other start-up funds.

Research by Strathclyde university states that decisions regarding women and finance are based on the interaction between women, who may lack confidence—perhaps because they recognise that they do not have the same level of resource to start a business—and those offering them finance, who may have a certain attitude and approach. There is an interesting challenge for us: if we can change the attitudes of those offering finance—for example, through the Aspire fund—will more women go into business?

Secondly, we have to acknowledge the issue of confidence. I challenge slightly the vicious circle that the hon. Member for Strangford mentioned: he said that dedicated schemes for women could undermine their confidence. I assure the hon. Gentleman that the other way of looking at that is that it recognises that they are a priority. Dedicated schemes, with mentoring and support for women, recognising that there is a gap, and bringing other women forward are helpful and supportive.

Some 38% of women in the UK, compared with just 3% of women in Europe, take advice from Government business support projects. Women are more likely to use all forms of business support than men, whether public or private, and are more likely to access support from professional services. It is important that mentoring schemes exist. It matters that other women are in business, because you cannot be what you cannot see. It is a simple principle, but seeing other women being successful in business offers a road map for women, showing them how they could be successful.

I pay tribute, as other hon. Members have, to a women’s business forum in my constituency. I venture to say that that forum, run by the amazing Jo Sealy, is more successful than our general business forum.

[Jim Shannon]

I just want to go back one sentence, with the hon. Lady’s permission, and talk about confidence. I was saying that we all have different natures. I have a different nature from other gentlemen in this Chamber, and the hon. Lady is different from other ladies here. It is important, when encouraging ladies to take a job up or move forward with their idea for entrepreneurship, that it is done in such a way that their confidence is encouraged. It is not that what is happening is not right; it is right for some, but perhaps not right for all.

[Stella Creasy]

I thank the hon. Gentleman for his clarification. My point is that he was querying whether a gendered approach to mentoring might not be counter-productive. I wanted to reassure him that such an approach is important for a lot of women, because it shows them a road map of where they could get to.

I also pay tribute to Simone Roche of Women 1st, Kate Hardcastle of Insight with Passion, Bev Hurley of Enterprising Women, Heather Jackson of An Inspirational Journey, and Margaret Wood of Opportunity Plus, who supports older women entrepreneurs. There are a number of schemes out there, and what they all have in common is that they were set up by women volunteering. Some of them have become social enterprises. I share the concern of my hon. Friend the Member for Feltham and Heston that, over the last couple of years, the work to support women doing that work has been downgraded. My second question for the Minister is: does he share our concern and think there should be a renewed effort to support and prioritise those mentoring networks, not just in local enterprise partnerships?

My hon. Friend and colleague the Member for Feltham and Heston is a fan of the work of the national Women’s Business Council, which was set up for a year as an independent body. Does the Minister think there is a case for making that a perpetual scheme and for considering how it could support mentoring, using and drawing on the experience there?

Thirdly, with regard to women finding it hard to see other women whom they might aspire to be, does the Minister share my disappointment and concern about the slow pace of progress in getting women into leadership positions in business across the piece? He must be disappointed with the slow pace of change, given the diversity dividend that comes from getting more women into boardrooms. He must also share the disappointment of his colleague, the Minister for Business and Enterprise, about the decisions of many businesses to appoint women to non-executive positions. The vast majority of women who have gone into leadership positions on business boards during the past couple of years have simply been appointed as non-execs and have not been in decision-making positions. I know that the Minister will be worried about that unacceptable situation, because it sends a message to women entrepreneurs that there are not women to trade with. Does he think that there is now a case for getting on with looking at what quotas could offer us, in respect of non-exec and exec positions, and the way that businesses are working with women?

My final questions to the Minister are about women to trade with. There is a slow pace of change when it comes to not just women in boardrooms and in entrepreneurship, but women to trade with. In a world economy, the way our businesses work with other businesses could provide huge opportunities for women entrepreneurs, but at the moment, women-owned businesses are winning less than 5% of corporate and public sector contracts.

The Government’s adviser has called for the Government to collect data on diversity in procurement processes, and said that the pre-qualification questionnaire should ask about women-owned business. Is the Minister concerned that the talk about removing the pre-qualification questionnaire for contracts smaller than €250,000 may mean that we will not see that level of engagement with the question of whether the Government are selling to women and doing all they can, through their own supply chain, to promote women’s business?

Although UK Trade & Investment measures women-led firms that export, we do not measure women being sold to and traded with in our economy. The Government have dismissed the idea of having a quota for tenders and the idea of measuring the number of women being sold to, although clearly that would help us understand the scale of the challenge and whether the Government are doing what they can. If the Minister wants insight into what difference that could make, he should look no further than that socialist utopia, the United States of America, where some 30% of all businesses are majority female-owned and the number of women-owned businesses continues to grow at twice the rate of all US firms. Women are increasing their economic clout and driving the American recovery. That is not happening by accident; it is being driven by the US Government’s deliberate choice. The USA Women’s Business Ownership Act 1988 put in place long-term infrastructure to support women’s enterprise development. The quotas and targets set by the US Government for women in their supply chain are changing the behaviour of companies in America.

In 1994, the federal Government established a 5% spending goal for federal agencies to encourage contracting with women-owned small businesses. That target has not yet been met, but it is almost being met and it is making a massive difference to women entrepreneurs in America. Indeed, it is changing the debate not just in the public sector in America, but in the private sector. Companies such as Walmart—again, not perhaps seen as a socialist leader, if the Minister is worried about that—have introduced “women-owned” labels since last year, allowing consumers to clearly identify products created by women-led businesses and buy accordingly. That company sees a commercial interest in this.

The Minister may be worried that I am talking straight away about bringing in a direct quota for selling to women. I recognise that first and foremost we have to ask the question, so will the Minister commit the Government to asking, in the public sector, about selling to women and to starting to monitor just how women’s businesses are being traded with in this country? Through that, we can understand the gaps in the industry. Perhaps there is a role in that for the Women’s Business Council and that dedicated lead on women’s entrepreneurship and business that my hon. Friend the Member for Feltham and Heston set out so clearly as being required.

Ultimately, if we want to give women confidence that their businesses will be supported, that they will be successful and that we can bridge the confidence gap, we have to show that the issue is a priority. The Opposition are committed to that; I hope that the Minister will show a similar commitment, so that we can all benefit from the increase in economic activity and productivity that bringing more women into the UK economy would offer.

[The Parliamentary Under-Secretary of State for Business, Innovation and Skills (George Freeman)]

It is a pleasure to serve under your chairmanship, Mr Robertson in the closing phase of this Parliament. I congratulate the hon. Member for Feltham and Heston (Seema Malhotra) on introducing this debate on Budget day—an important day, when attention will be rightly focused on the Government’s initiatives to support business and entrepreneurship. As a Business Minister, it is a pleasure to be here and to be able to respond to the debate. I pay tribute to the Members who have spoken today. We heard powerfully from the hon. Member for Strangford (Jim Shannon) on some of the good practice in Northern Ireland. I was there recently celebrating and supporting the Northern Ireland life sciences cluster. He made a powerful point about the importance of rebalancing the Northern Ireland economy from public to private sector and the role of women entrepreneurs in that. He also made an important point on mentoring—I would be interested to look at the scheme he mentioned—and also touched on child care.

The hon. Member for Feltham and Heston made a number of points and I will try to deal with them in my speech, as well as to answer some of her specific questions. I pay tribute to the large number of women who have contributed to the driving of the agenda outside this House. A number of pioneering entrepreneurs and women in policy have been mentioned today. It is another area where more needs to be done. I am proud of what this and the previous Government have done, but the Government agree that we need to keep our foot to the pedal and keep at it.

I particularly thank and congratulate those behind the Aspire fund, the taskforce and the Women’s Business Council for their work. The subject is close to my heart, partly because I have a 14-year-old daughter whose career I take a close interest in, and partly because I come from a 15-year career in the entrepreneurial sector in Cambridge and elsewhere around the country starting high-growth technology companies, particularly in the life sciences. In that sector, I am glad to say, there is a proud record of women achieving very highly both in our larger companies—I recently met a delegation from GlaxoSmithKline, and Members will be delighted to know that all five representatives were women—and in the smaller companies. There are huge opportunities for women in life sciences, both at the bench and in driving small businesses.

Women and entrepreneurship is also an area of interest from a policy point of view. Through the 2020 Conservatives group, I have set out a number of measures on how, in driving the rebalanced economy and the long-term economic plan, we have to liberate the entrepreneurial talents of all our citizens, and in particular reach into those areas where we have not properly unleashed them before. It is clear from what Members of all parties have said this morning that there is a lot of latent entrepreneurial talent in our female community. In our inner cities and our black and minority ethnic communities, there are incredible rates of entrepreneurial activity that we have not recognised, properly reached into and supported. Family finance supports a lot of our small businesses in some very business-hostile environments in some of our inner cities.

In the public services—before the shadow Minister leaps to her feet, I do not mean privatisation—we should unleash the spirit of entrepreneurship and the talents of people in the public services to deliver more for less. The economy nationally needs a strong focus on unleashing that spirit of enterprise. That does not always mean for-profit or very acquisitive, venture capital-backed businesses; it means a culture of delivering more for less and innovating. We need that to modernise our public services and to continue to drive the recovery that we are leading. The subject is close to my heart, and on Budget day it is close to the Government’s mission more widely.

The truth is that small businesses are the lifeblood of our economy. Every village, town and city in Britain contains shops, garages, cafes, manufacturing firms, hairdressers and so on. We take those small businesses for granted, but they are backed by enterprising and hard-working people who are taking risks to run those businesses. Responsible society depends on the ties that bind us, and as well as the economic benefits it brings, an entrepreneurial, small business economy does something else: it builds the ties and social capital that link communities.

[Jim Shannon]

The Minister is making a powerful response, saying what he feels he can do. One of the growth industries in my constituency and across the whole of Northern Ireland, particularly among ladies, has been the craft industry, where there are special talents and the ability to create products for sale. The Minister mentioned shops, small businesses and restaurants and so on, but the craft industry could release enormous talent and job opportunities across the whole United Kingdom. What are his thoughts on that?

[George Freeman]

The hon. Gentleman makes an important point. I was about to talk about the importance of small business in driving innovation if we want an innovation economy. Small businesses tend to be quicker to adopt innovation and to drive it. They are a force for insurgency in the economy. In tourism and crafts, we should not forget that small businesses are important in our theatre, media, digital and tourism sectors. A culture of empowering people and unleashing the talents of women in every walk of life is incredibly important if we are to build a diverse and strong economy and a strong and linked society.

That is why I am absolutely delighted that the UK is a truly great place to start a business. This year we have seen data confirming that 760,000 small businesses have been created in this Parliament since 2010. We are backing business every step of the way, making it easier to start, succeed and grow. We will hear about more such measures in the Budget later today, I have no doubt. I am delighted, too—but not complacent for a minute—that in 2013 there were more women-led businesses in the UK than ever before: 990,000 of our SMEs were run by women or a team that was more than 50% female, an increase of 140,000 since 2010. We know that more needs to be done, and we need to build on that positive momentum. I am also delighted that in the UK, women-led small businesses are contributing £82 billion to the gross value added of the UK economy.

Before the debate, I looked at the latest data, which are even more encouraging. The data from the Office for National Statistics for October to December 2014 show that there were 1.45 million self-employed women in the UK, which is 42,000 more than in the previous quarter and 281,000 more than in May to July 2010. Some 672,000 of those self-employed women were working full time and 778,000 were part time.

I pay tribute to the work of the Women’s Business Council and the important policy work that it has done and intends to follow up. It has rightly, as a number of Members have highlighted, pointed out that if we had women starting businesses at the same rate as men, we would have up to 1 million more entrepreneurs. That is a good reminder of the latent potential that we need to continue to drive at.

One or two Members asked about the Government’s commitment and which Minister is responsible for this. I am delighted to say that a number of Ministers are responsible. The Minister for Business and Enterprise leads on enterprise policy for the Government. The Secretary of State for Education is also the Minister for Women and Equalities. The Under-Secretary of State for Women and Equalities at the Department for Education is also an Under-Secretary of State for Business, Innovation and Skills. They are all working to develop joined-up policies with the Government Equalities Office. We take it seriously as part of our commitment to social justice and to the long-term economic plan.

Research by the Enterprise Research Centre has shown the challenges that confront women entrepreneurs, but in many ways they are similar to those facing men.

Childhood Cancers

Jim Shannon Excerpts

Wednesday 25th February 2015 Commons Chamber

[Nicola Blackwood (Oxford West and Abingdon) (Con)]

Skye was born on 5 November 2008. He was a happy, healthy young boy with a wonderful sense of humour who loved his younger brother, Jesse. In July 2013, he became unwell with nausea and vomiting and after many visits to the GP and the failure of medication to help, he was referred to the John Radcliffe in Oxford where he had a CT scan and was diagnosed with a brain tumour. That was 27 August 2013.

Skye was operated on less than a week later and tissue analysis identified the tumour as a grade IV metastatic medulloblastoma, the most commonly occurring paediatric brain tumour. It is an aggressive form of primitive neuroectodermal tumour, which originates in the cerebellum, the part of the brain which controls movement and co-ordination. Although Skye’s tumour had been caught early, it had already metastasised throughout the brain and spinal cord. Surgery was quickly followed by what is known as the Milan protocol: four cycles of chemotherapy over 11 weeks, and a further five weeks of hyper-fractionated radiotherapy. After a four-week period of recovery, Skye had high-dose chemotherapy that confined him to hospital for seven and a half weeks.

He then had four weeks rest at home, and was due to head back to hospital on 14 May 2014 for another round of high-dose thiotepa, but a urinary tract infection delayed the treatment until 28 May, which in hindsight was fortunate. Instead of getting stronger, it became apparent that Skye was getting weaker and an emergency MRI scan on 20 May revealed widespread white matter lesions within his brain and spinal cord, which caused a flurry of correspondence between consultants across the UK and abroad. He was quickly started on high-dose steroids to combat the inflammation.

It was initially diagnosed as radionecrosis, which had been brought on by the combination of therapies that he had had to endure. It was later confirmed as radio-chemo neurotoxicity. His parents were told that that was highly unusual and very rare. We now know that a number of other children have also developed severe neurological side effects and the Milan protocol was quickly withdrawn from use in the UK. He was in a state of paraplegia, with double incontinence, and very poor use of his upper limbs and hands. Skye sadly died at home on 29 August 2014.

I did not meet Skye and I only met his parents some time after his death. They are in the Gallery tonight and have demonstrated to me the most extraordinary bravery in the face of losing their child in this most distressing of ways. They have set up Blue Skye Thinking, a charity that supports research so that all children diagnosed with brain tumours will have a better chance of survival and a better quality of life post-treatment. They continue to support many other parents whose children are suffering from cancer today.

I have taken some time to explain Skye’s story in detail this evening because it illustrates only too well some of the things that are working in childhood cancer treatment at the moment and some of the things that need improvement. The overall story of childhood cancer treatment over the past 30 years is a positive one. Eight in 10 children with cancer survive five years or more, compared with just three in 10 in the 1960s. Short-term survival is also high: fewer than 10% of children die within a year of diagnosis and only 2% die within 30 days.

I congratulate the Government on that. Ministers have demonstrated a clear commitment to fighting cancer and the work and money that has been put into the system to improve cancer survival rates are bearing fruit and proving that the money is being well spent. However, we should not allow these headline statistics, encouraging though they are, to blind us to the fact that, rare though childhood cancer is, it remains the leading cause of death in children and teenagers in the United Kingdom. Childhood cancers account for just 1% of cancer diagnoses in the UK. For research purposes that is a small cohort, but 700 children and young people are diagnosed with a brain tumour every year.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this matter to the House today, and for allowing me to intervene. Cancer Research UK has given me some figures today showing that 60 people are diagnosed with cancer each day in Northern Ireland. When Josh Martin, a young boy at secondary school, went into hospital to have his appendix removed, he was found to have progressive cancer. His family started the Pray for Josh campaign, which is being supported by his family and by the Churches. It has not only given great comfort to the family but helped to highlight the scourge of cancer and the fact that funding for drugs and help for families are very important. One of the organisations that can help is Macmillan Cancer Support. Does the hon. Lady agree that the support of such organisations can be important for families at times like these?

[Nicola Blackwood]

The hon. Gentleman is absolutely right to say that this is about not just Government funding but the way in which funds are given, and charities in particular play an important part. The fundraising that they do through individuals is vital.

As I was saying, 700 children and young people are diagnosed with a brain tumour every year, and that makes it the most common form of cancer affecting children and young people. It is also the most lethal. Brain tumours kill more children and young people than any other cancer—around 160 children a year—but despite being responsible for more than a third of childhood cancer deaths, brain tumours receive only 6% of childhood cancer funding. That funding matters because children’s cancers are biologically very different from adult cancers and treating them effectively requires specifically tailored research and targeted treatment regimes. At the moment, only about 50% of childhood cancers are part of a clinical trial; the remainder are treated using standard treatment guidelines. As Sally and Andrew Hall discovered, that can have serious consequences.

Cancer treatment is harsh at the best of times, and recent studies show that while many survivors of children’s cancers go on to live healthy lives, others face long-term disability and reduced immunity. Radiotherapy, the gold standard in terms of its efficacy in treating cancer, can also have damaging long-term consequences for the developing child. This is particularly true of childhood brain tumour survivors, 60% of whom are left with a life-altering disability. In a few cases, the side effects can be so severe as to be fatal. That is what happened in Skye’s case.

The Milan protocol, under which Skye was treated, was a standard treatment guideline, because as with about 50% of other childhood cancers there is no clinical trial available. It has become clear that there is currently no formal infrastructure in place to collect, record and share data, particularly on adverse effects of treatment, about standard treatment guidelines. I understand that before 2008 the responsibility for collecting and sharing data for clinical trials and for standard treatments fell under the remit of the Children’s Cancer and Leukaemia Group. Subsequently, clinical trials monitoring was tightened, and the CCLG’s “Guide to Clinical Trials” states:

“Clinical trials are very closely monitored by a number of different individuals and organisations. This will include the Chief Investigator…the working group…and relevant staff within the clinical trials unit. An Independent Data Monitoring Committee may also be established to oversee the conduct of the trial. At a national level, there will be an ethics committee and the national regulatory body. If there are any concerns about the conduct of the trial or the results, a trial may be stopped early.”

By contrast, in a letter responding to my concerns about the issue, the National Cancer Intelligence Network, told me that

“all of us in the field accept that (adverse effects in Standard Treatments) is something that should, under ideal circumstances, be a part of the data that we routinely collect. Such data are, however very much more difficult to collect than might be imagined and adverse effects were never part of what the CCRG (Childhood Cancer Research Group) or the CCLG themselves collected outside of a clinical trial. There are no nationally agreed datasets relating to adverse effects and few clinicians systematically collect and collate data of this sort...but it is clearly something that we in the NCIN should be considering.”

I am grateful that the NCIN has recognised that these data should be collected and collated, but I do not think that considering doing it is a sufficiently robust or urgent response to the problem, given the gravity of the consequences if a standard treatment goes wrong.

Clearly, in an ideal world all childhood cancers would be the subject of a full clinical trial and new targeted therapies being developed to reduce the long-term risks, but all of us know the challenges associated with research into childhood cancers, where cohorts of rarer cancers can be incredibly small and the ethical issues are more complex, making recruiting participants more difficult. Obviously, I am going to urge the Government to do whatever they can to fund and encourage more research into childhood cancers. I am going to ask the Minister to consider whether having only 6% of childhood cancer funding going to the biggest killer in childhood cancer represents getting the balance right, and I am going to ask her to maintain investment in the Health Research Authority programme to streamline the regulation and governance processes for clinical research in the NHS.

Oesophageal Cancer

Jim Shannon Excerpts

Monday 23rd February 2015 Commons Chamber

[Mike Weatherley (Hove) (Con)]

In November 2011, I had my dinner as normal, but what was not normal was that it did not settle well and I threw up. I dismissed it as probably a bug of some sort, but then it happened again a few days later. Clearly something was not right, but I did not relish the hassle of getting an appointment to see my doctor. I hate going to see my GP, not because I do not like her, but because the booking system is so frustrating. I put it off for another week or so, but by mid-December 2011, still throwing up occasionally, I decided to battle the booking system, and I went to see my wonderful GP. She referred me to the local NHS hospital, and five weeks later I got an appointment to see a gastroenterologist. The first diagnosis was excess stomach acid, so I was put on antacids and on the list for both an endoscopy and colonoscopy. Unfortunately, the painful probes were inconclusive, as was the follow-up CT scan—nothing was really found other than a severely restrictive oesophagus—but by now eating was becoming a major problem.

There are many people who influence and shape a life, but when someone saves a life—well, that is something very special. Professor Robert Mason is one of those exceptional people. He drew on all his experience, and despite no conclusive evidence, he insisted I came in immediately to have my oesophagus removed. Of course, I argued against this, asking for key-hole surgery or to defer the operation until the summer after more tests, but Professor Mason insisted until I changed my mind and a date was set for 18 April 2012. The full extent of just how serious this was had not fully registered with me. When I was in the pre-op room, I was asked what I had done to prepare in the morning, and I said I had gone to work, and indeed I had. I went into Parliament in the morning and drafted letters to constituents, and at the required time I popped across the river and slipped on the less-than-flattering gown.

It turns out that the surgery is equivalent to a triple heart bypass—the whole oesophagus is removed plus, in my case, a third of the stomach. May I pause here to thank all the doctors and nurses who looked after me at St Thomas’, and especially the nurses in the high dependency unit, who were simply fantastic and a tribute to the NHS? I must also mention a second person who was integral to saving my life—James Gossage, who carried out the surgery along with Professor Mason, and who carried out many post-operative follow-up surgical procedures. Mr Gossage is an exceptionally nice specialist who has a dedication to his profession that is inspirational.

Despite the ordeal, the worst moment was still to come. Until this point no cancer had been detected, but a week after the operation, Professor Mason came in and gave me the confirmation—the biopsy confirmed stage 3 cancer. There is nothing in this world that can prepare someone for the words, “You have cancer.” Sadly, oesophageal cancer is particularly aggressive, and more than half of oesophageal cancer patients die within a year. All sorts of things go through your mind when you hear stats like that, from severe regret about potentially not seeing your kids get married, to even more regret about not being treated earlier—every week really does matter—and many more dark thoughts. A sobering fact is that if Professor Mason had not insisted that the operation should be in April, and if he had agreed to wait until July as I wanted, it seems very likely that I would have been dead by Christmas 2012.

Step up the third person I owe my life to—Andy Gaya, who was in charge of my post-operative treatments. Intensive revolutionary radiotherapy and chemotherapy followed. There were days when I was so exhausted that I could not even reach out for the remote control to change TV channels. Andy Gaya made sure that I was going to be given the best chance of survival. We know that almost certainly some cancer cells were not removed during the surgery, and the treatments, while not pleasant, had to be intensive and push the boundaries in order to be sure that the cancer was treated.

Of course, there is a fourth member of the care team that I owe my life to, and that is my partner Niki. I cannot imagine how difficult it is for anyone going through this experience without someone holding their hand throughout. We throw around stats and theoretical outcomes, but the reality is that there is a whole army of real people behind every medical condition. In my case, there are four people who I can say directly saved my life, plus a huge number of attentive hospital staff, post-operative specialists, district care nurses, GPs and others. My dad often says that being born in the UK is like winning the lottery of life, and he is not wrong. We live in a great country. Having seen the NHS from the inside, I can of course see many areas where it is easy to say that this or that could be done better, and of course it is not perfect, but the reality is that it is an amazing institution that performs incredibly well. That is a result of the amazing people who work in that rightly cherished organisation.

However, I need to mention the opposite side of the spectrum. There are a lot of people out there in society who should hang their heads in shame. Around that time, as a result of my work in Parliament on various issues, I was getting death threats and other hate-filled correspondence, including from many people who simply tweeted with #getcancer. I wanted to reply saying, “Too late—already have it!”, but of course I refrained. The experience served as a stark contrast. One the one hand I was seeing the best of society in the care delivered by really caring people, but then there were the despicable members of society who contributed nothing positive. When I asked the Prime Minister to hold Russia to account for gay rights violations, I got one particularly nasty threat, which the police tracked down to a 24-year-old postgraduate from Manchester who said that she thought it would “be a laugh”. Anyone who supports that kind of hatred should spend a day in a hospital to see just how lucky they are and how great doing good is.

Moving back to cancer, let me take a moment to consider some statistics. The UK is facing an upcoming battle with cancer. It is projected that by 2020, more than half the European population will receive a cancer diagnosis sometime in their life. However, the rates of cancer survival in the UK rank among the worst in Europe. Reasons for that include, but are not limited to, late diagnosis and a lack of treatment options for cancer patients. In fact, a major study of more than 29 European countries found that the survival rates of almost all the most common cancers are worse in Britain than the European average. How will the NHS cope when, within five years, more than half a million people will be diagnosed?

As a cancer survivor—I say “survivor”, but all people who have had the disease know that it can come back at any time, so we are really just in remission—there are a few things that I have learned. Cancer support groups such as Macmillan Cancer Support and the Oesophageal Patients Association are key in providing aid and comfort to those with cancer. Beside providing emotional support to victims of cancer and their families, they often go the extra mile to provide information on matters such as treatment options, local support groups, holistic alternatives to surgery and chemotherapy, and cancer prevention. I was lucky—I had a great partner who helped me through it all, and I did not need to use the support services. I did have one moment in a restaurant when I could not eat and hit a terrible low, and I started reaching for the support line, but for the most part I did not have to fight it on my own. Sadly, many do, and such support groups are vital.

Specific to my cancer is the Oesophageal Patients Association, started by David Kirby back in 1985, which provides support and advice to patients with oesophageal cancer. It is involved in the campaign to increase awareness and in expanding our self-care groups across the UK. My thanks go also to Alan Moss, chairman of Action Against Heartburn, for his input into this speech.

More than 331,000 people are diagnosed with cancer each year in the UK. More than one in four deaths are caused by it, and 161,000 people died of it in 2012. Cancer is primarily a disease of old people—more than 50% of cases occur in those aged 75 or more—but, surprisingly, it is also the most common cause of death in children aged between eight and 14. In those aged between 25 and 49, cancer accounts for 18% of all deaths, and 41% of deaths among those aged between 50 and 74 are related to it.

[Jim Shannon (Strangford) (DUP)]

In Northern Ireland, the mortality rate among women with oesophageal cancer is rising, and the five-year survival rate among men is only 16%. That indicates a need for resources to be directed towards oesophageal cancer throughout the United Kingdom. Does the hon. Gentleman agree that it may be time for a UK-wide strategy to be applied to all four regions?

[Mike Weatherley]

I could not agree more. Early diagnosis is one of the key recommendations that I shall be making.

It is clear that cancer is one of the leading causes of death, but there are risks for survivors as well. It is estimated that 2.5 million people are living with and beyond cancer, and we know that at least one in four cancer survivors face poor health or disability after treatment. Cancer of the oesophagus is the eighth most common type of cancer in the UK among men. Only 40% of those who are diagnosed with it will live for at least one year after the diagnosis, and, tragically, 85% will die within five years. Let me put that into a personal perspective. According to the statistics, if I survive for another four years, I shall be part of a very small minority of just 15%. When people ask why I am leaving Parliament after one term, I reply that one of the reasons is that, given such a high probability, there is a chance that I will not see out another Parliament, and that does make one think about other options.

NHS Mental Health Care

Jim Shannon Excerpts

Wednesday 11th February 2015 Westminster Hall

[Mr Hancock]

I agree entirely. We lucky ones who are privileged and proud to be in this House of Commons must use whatever elements are available to us, whether in speeches here or outside this House, to do more to expose this issue.

I was fortunate because the people I was in contact with were able to put me through a series of different things. They saved my life—I have no doubt whatever about that. I could not stand my life any more and, like so many people, I realised that far too late. I had probably left it six months too late, and because of that my recovery took much longer.

There are others outside the system—people and organisations that try to help. They include Talking Change, which is in my constituency. However, I say to the Minister—through you, Mr Pritchard—that the crisis care service is at breaking point. Services are understaffed and under-resourced; they are overstretched. As for talking therapies, which a lot of people mention and which I have heard the Minister himself praise in the past, 40% of the people who want to use them have to wait more than three months just for an assessment, and that assessment is normally carried out on the telephone. I urge the Minister to try that interview over the telephone. Then, if they are lucky, they will receive some treatment, but one in 10 people wait more than a year to get even the chance to talk about the problems that have driven them to the edge of the abyss, so that they are living in total despair. In addition, a third of the people who are assessed have to wait more than three months to start the therapy.

I ask this Government and whoever is in power after 7 May to really mean what they say about mental health services. There is a crying need for that. When I heard the Deputy Prime Minister talk about mental health services, I thought, “Oh! Maybe we’ll get somewhere and something might happen.” I live in hope, but my experience—having looked into this issue in quite some detail—tells me that the same promises have been made many times during the past 20 years.

I was someone who felt that he could tough out most things, but in the end I had to succumb to the stress and strain I was under, to such an extent that I had no alternative but to seek real help. However, there are literally thousands of people out there who are affected. A quarter of the population of this country will come into contact with mental health problems at some time during their life. Unfortunately, so many of them are disappointed by what they get in the way of treatment from the NHS.

[Jim Shannon (Strangford) (DUP)]

I apologise, Mr Pritchard, for not being here earlier; I was on the Heathrow Express and just could not get here any quicker, unfortunately.

I commend the hon. Gentleman for bringing this matter to the House for consideration. One in five elderly people will suffer from a mental or emotional breakdown. Such breakdowns are more prevalent among women, but the suicide rate among men is three times higher than among women. Given how we are, men, unfortunately, do not tell our stories in the way that we perhaps should.

The hon. Gentleman is putting forward a very strong argument as to why we need to focus within the NHS on those men who have difficulty addressing the issues of depression, anxiety and emotional breakdown. Does he feel that the Government need to have an educational strategy, one that encourages people and helps families and GPs in particular, so that men will discuss these matters with someone who will listen?

[Mr Hancock]

I could not agree more; it would make such sense for that to happen. The hon. Gentleman is dead right. It is vital for people just to have someone outside the family circle to talk to and open up to, and then later they can develop the inner strength to tell people, “Oh, by the way, it happened to me.”

I have no hesitation in believing and saying that we have got to do more, because a lot of the elderly people who the hon. Gentleman just mentioned were in a stressful situation long before they got to that age. I know, because I have met such people, both before my illness and subsequently.

We have to do all we can in this place not only to keep this Minister and this Government focused on this issue but to commit ourselves—as a Parliament—to fight this issue, on and on and on. There should be no neglect of people who suffer from a mental illness. If they receive help early enough, it will save the NHS a fortune, and if the treatment is thought through properly, which might include the NHS talking to people such as myself who have been through the system and seen the good and bad of it, maybe, just maybe, we might start to get things right.

Human Fertilisation and Embryology

Jim Shannon Excerpts

Tuesday 3rd February 2015 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I hold the Minister in the utmost respect, but I feel greatly aggrieved that we are discussing this matter today in the House and that the Government are pushing forward with legislation on a process that I believe is unethical and unproven.

When assessing the reports published by the Human Fertilisation and Embryology Authority, we must take into account the point that the expert panel comprises a small group of scientists convened by the HFEA. Hearing the tone of today’s debate, one could be forgiven for thinking that they represent world scientific opinion. I do not want the House to be hoodwinked into thinking that there is a consensus on this issue, because there certainly is not. In fact, numerous world-leading scientists have been at pains to express their concerns about the proposals.

They include Professor David Keefe of New York university medical centre, himself a pioneer of spindle transfer techniques, who said:

“the application of the…techniques…represent intriguing advances of earlier work, but displays of technical virtuosity should not blind us to potential hazards.”

He explains that his research group moved away from these procedures because

“vexing concerns linger about the safety of mitochondrial replacement”.

He is far from alone. Stem-cell scientist Professor Paul Knoepfler is so concerned that he wrote an open letter to Parliament urging caution on the ground that rushing ahead would damage the reputation of science as a whole. He concluded:

“Overall, the UK would most likely be making an historic mistake by allowing 3-parent technology to proceed in the near future. Please wait on this critical decision for the additional information needed to make a wise choice in the long run.”

Clearly, we need time. Australian expert Professor Justin St John calls for more tests in non-human primates, so that we better understand the possible effects of the techniques. He says:

“As well as analysing foetal development in a non-human primate model, it is essential to analyse offspring to determine that no abnormalities appear at least during early life”.

None of those figures objects to the ethics of the techniques. Their objections are based purely on the science. Lest we think that they are lone voices, it must be remembered that the United States Food and Drug Administration considered the techniques last year and decided that there was not enough preclinical evidence to justify proceeding. I understand that the same body has reopened the debate and has insisted that it will be at least two yeas before it is ready to make a judgment.

In that context, I find it extraordinary that the Government have not waited for the conclusion of the preclinical safety experiments that the HFEA said should be conducted before proceeding.

[Dr McCrea]

In her opening speech the Minister mentioned that the devolved Administrations had been kept abreast of these proposals. I wanted to intervene to ask her whether the regulations will apply in Northern Ireland if they are passed in this House. That is an important question to which an answer is needed.

[Jim Shannon]

I am glad my hon. Friend raised that point.

We cannot have a real debate today without the evidence. New Scientist, typically a champion of progress in all areas of research, warned of a lack of understanding of the links between mitochondria and nuclear DNA. The fact is that the procedures for creating children are so controversial that no other country makes legal provision for them. The Council of Europe convention on biomedicine expressly prohibited them. The fact that experiments recommended by the Human Fertilisation and Embryology Authority itself have not been concluded, written up and peer-reviewed raises extensive safety concerns. Yet we as parliamentarians are asked to make a decision today without having all the clinical evidence before us.

In the preclinical tests that have been carried out, one of the techniques was tried in humans and resulted in three foetal deaths. The obligations in international law, specifically the European directive on clinical trials—

[Robert Flello]

On that point, will the hon. Gentleman give way?

[Jim Shannon]

I am sorry, I cannot give way. I do not have enough time.

The legal opinion of the Labour QC Lord Brennan seemed to suggest that the Government will not bother with clinical trials. That seems extraordinary and will come as a shock to many who spoke in favour in the debate on 1 September. My colleague Lord Morrow spoke to the Northern Ireland Attorney-General about the attempt of the Department of Health to argue in the response to Brennan that these regulations are not caught by the clinical trials directive, on the basis that the intention is to skip clinical trials. The Attorney-General told Lord Morrow that in his opinion the Department of Health is wrong and the regulations do indeed contradict the clinical trials directive. If the regulations go through today, they will contradict international law as well. The same point was made by 44 Members of the European Parliament. I urge the House to vote against the regulations.

--- Later in debate ---

[Mr Speaker]

I thank the hon. Gentleman for his point of order, and I confirm that two hon. Members who wished to speak were unable to do so. I expressed sympathy at the start of the debate for the hon. Member for Enfield, Southgate (Mr Burrowes) who would have preferred a longer allocation of time, but I must operate within the rules and procedures of the House. It is also fair to emphasise that 12 Back-Bench Members representing different viewpoints were called. That is the factual answer.

The hon. Member for Stoke-on-Trent South (Robert Flello) invites my view as to the propriety or otherwise of this matter, and I can say only that we have operated entirely in accordance with procedure. There has been no impropriety and nothing disorderly. I understand that some people are discontented, but I hope people will not take offence if I say that to a degree, I think there will always be people who are discontented. It is difficult to get unanimity on these matters, either on the merits of the issue or on the procedure. However, I think we have done our best, and people have done their best today to help each other, which is worthy of note.

[Jim Shannon]

Further to that point of order, Mr Speaker. It is obviously of great concern to many Members of the House that only 90 minutes was allocated for that debate, and you outlined at the beginning that the Minister could control that. What advice would you give to Back Benchers who want to ensure that in future, if there are debates about such enormous change for the whole United Kingdom, we can ensure a three-hour debate rather than a 90-minute debate?

[Mr Speaker]

I am always happy to offer my advice to the hon. Gentleman, but whether he takes it or not is entirely up to him. The short answer is twofold. The hon. Gentleman is an assiduous attender of debates—indeed, I have often wondered if he sleeps here overnight because he is invariably present in the Chamber at all times and for every Adjournment debate. First, he should always turn up at business questions when he can raise such matters with the Leader of the House. Secondly, if he feels that Back Benchers should have a greater say in the allocation of time on matters of this kind, he might want to join forces with other hon. Members who are championing the creation of a House business committee. That was to be introduced by the third year of this Parliament, but I think it momentarily slipped the Government’s memory and therefore has not happened. It might happen in the next Parliament, however, and I have a feeling that the hon. Gentleman might be a cheerleader for it. We will leave it there.

Hormone Replacement Therapy Implant

Jim Shannon Excerpts

Wednesday 28th January 2015 Commons Chamber

[Tracey Crouch (Chatham and Aylesford) (Con)]

I am very pleased to have the opportunity this evening to speak on behalf of not only my constituents but many women across the country on the issue of commissioning and funding the hormone replacement therapy implant.

While I appreciate that for the overwhelming majority of women experiencing the menopause alternative HRT treatments are perfectly effective in addressing their symptoms, for a small number this is not the case, and the impact is significant. This issue was first brought to my attention by a group of my constituents who were being treated with the implant from the well woman clinic at Lordswood community healthy living centre in my constituency. In March 2014, after Medway clinical commissioning group announced that it would no longer be providing funding for the insertion of HRT implants, they sent me a copy of a petition signed by 200 women, one of whom has since sadly passed away.

After receiving the petition, I met a number of the individuals concerned to discuss why the alternative treatments were inadequate. They described the effect on their quality of life of no longer having access to the implant, and the problems that they had experienced with other formats of the therapy not addressing their menopausal symptoms.

The purpose of today’s debate is not to advocate access to the implant for all women going through the menopause. I am aware that many women either go through the menopause without any major problems or can sufficiently negate their symptoms with the cheaper licensed alternatives such as patches and gels. However, for a selection of women, the HRT implant provides benefits not addressed by alternative forms of the therapy.

A small percentage of women are severely affected by this issue. They include women with a history of breast cancer in the family. HRT has been thought to increase the risk of breast cancer, especially when used over long periods of time. However, the implant is seen as a preferable option for those seeking HRT treatment as there is a reduced risk, because it is absorbed directly into the blood and bypasses the liver. They also include women who experience some of the more severe symptoms. Symptoms such as joint pain and depression, which cannot be eased by the other licensed formats of the therapy, can also be improved by the implant. These more severe symptoms can have a huge impact on the quality of daily life and on well-being, affecting factors such as employment and mental health, which have cost and health implications of their own, both to the economy and to the individual. The small percentage of women severely affected by this issue also includes women who suffer from early menopause. This means that they are likely to suffer symptoms over a protracted period, and they have also been seen to have much better results from the implant.

The personal experience of my constituent Sarah clearly highlights the reality and severity of the effects involved, as well as the benefits that the implant can provide. Sarah King is suffering early menopause. She is a lovely young married mum with three young boys. For most of her life she had been healthy, active and happy, but in recent years she suffered a number of accumulating health problems. These included joint pain—to the point of hospitalisation—skin problems, depression, headaches and lethargy. After a number of years of various treatments and no real improvement, she was sent for a simple blood test which revealed extremely low hormone levels, indicating that she was suffering an early menopause.

Owing to a family history of breast cancer, Sarah was first offered the opportunity to try the HRT implants. Within a short time, all her poor health issues had gone. When the HRT implant service stopped, she tried the HRT patches and then the gel, but neither gave her the same result that she had experienced with the implants. Her health deteriorated to the point that she had to quit her full-time job as a teaching assistant. She started researching on the internet and discovered that the Chelsea and Westminster hospital in London had a specialist menopause clinic and HRT implant service.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this delicate issue to the House for our consideration. My understanding is that this hormone replacement therapy is available only in certain locations across the United Kingdom. Does she agree that we need consistency of availability, from Aberdeen to London and from Cardiff to Belfast, and that it should be available to everyone?

[Tracey Crouch]

I am grateful to the hon. Gentleman for his intervention. The implant is no longer uniformly available nationally. The decisions being taken locally are affecting people who might not be able to travel to London, for example. I shall come to that later in my speech.

Sarah contacted Medway CCG to ask whether it would object to her being referred to the Chelsea and Westminster hospital as an NHS patient. The CCG told her that there was no objection and that the patient’s well-being was its priority. Following that consultation, Sarah had her first appointment at the Chelsea and Westminster on Monday 12 January this year. She was accompanied by her husband, and he was able to tell the medical practitioner who interviewed Sarah what it had been like before she received HRT implants at the Lordswood clinic, what it had been like after she had the implants, and what it had been like to see her health deteriorate again when that treatment was no longer available. He said:

“I just want my happy, healthy Sarah back.”

The medical practitioner that Sarah saw said she was an ideal candidate for the HRT implant and did not hesitate in giving it to her during that first visit. Within a week Sarah says she is already feeling much better, and she has now set up a website dedicated to supporting women suffering severe menopausal symptoms. I am sure that Sarah is just one woman of many who have found themselves in this predicament, but not all have had such positive outcomes.

I would like to take this opportunity to thank the constituents of mine, especially Val Weeden, who have tirelessly researched and campaigned on this issue. They have actively searched for solutions and continuously shared their information with me. They have constantly supported each other through what has clearly been a very tough situation for many. It is extremely unlikely that this issue is unique to my constituency; I am sure that many women across the country and beyond who suffer from severe symptoms no longer have access to this potentially life-enhancing treatment because of localised commissioning structures. They may not all come across information for Chelsea and Westminster’s specialised service, and women in the far north or far south of the country who do may struggle to travel to London, at a potentially extortionate cost. Although I appreciate that this is not a cost to be incurred by the health care system, it is one that I would like the Minister to consider today.

After some research into this issue, I identified that on 5 July 2011 MSD, the only licensed provider of the Estradiol implant here in the UK, issued a letter to GPs stating that it was to cease manufacture of the product. It stated:

“the company’s global decision to discontinue the manufacturing of Estradiol was made after consideration of commercial factors and the fact that therapeutic alternatives are available in most countries. The decision is not related to a product quality or safety issue”.

For most women, this issue of cost has no impact on their treatment and well-being, but the 200 women in my constituency, and, I imagine, many others beyond for whom the alternative forms of HRT are not suitable, have been left with a void in their health care. The UK now has no licensed provider for a treatment that enables sufferers to live a normal, high-quality, day-to-day existence.

I recognise that the lack of a licensed provider is not necessarily a problem, as GPs are able to prescribe unlicensed medicines if they feel there is a special need and an unlicensed provider of the product exists in the UK. However, in my constituency this process has not adequately represented the women for whom this treatment is so important, because when our CCG made the announcement in March 2014 that it would no longer be providing funding, the justification was that 200 women was far too great a number to be treated with an unlicensed medicine when licensed alternatives were available.

Although I disagree with the idea that an increased demand for treatment somehow de-legitimises its suitability, I am aware of the potential concerns about licensing. However, just because a product is unlicensed, it does not necessarily mean that it is unsafe, as has been highlighted in MSD’s notice of cessation. In fact, in this case the unlicensed treatments being provided have been widely used across the country and the world. The only reason they are currently unlicensed is that the license holder deemed its provision economically unviable.

That brings me to my conclusion. My constituents found the Chelsea and Westminster clinic through independent research on the internet. That is not a good enough procedure to ensure that women have access to the vital services they need in our health care system. I, for one, recognise the positive changes that this Government have made to our health care system—namely the emphasis on the importance of well-being. I also believe that, for the most part, our doctors are best placed to commission our local services, but this case is an example of where the economics of devolved commissioning are perhaps having a negative impact on specialist services.

The Chelsea and Westminster clinic is proof that there is clearly a recognised medical need for the HRT implant to be made available, as a uniquely successful treatment, to a significant minority of women. I therefore ask the Minister to commit to take steps to ensure that our shared vision of our health care system is a reality for all who use it, including these women. I urge the Minister to take steps to make sure that this specialised service is available to all women who may need it, in an appropriate location, and that appropriate referrals take place. To follow any actions that he may take on this issue, will he make a commitment to publish new guidance or write to GPs to inform them about best practice for their patients in this position.

Looking forward, we also need to understand early menopause better and how it may be affecting women from an earlier age. I urge the Minister to engage with national organisations such as the Daisy Network, which was set up for this age group to see how best we can do that. We also need more research into severe menopausal symptoms and treatment for them. Will the Minister commit to look at this whole area of concern?

Finally, I thank Val, Sarah and the rest of my constituents who have campaigned tirelessly on this issue. Their support has enabled me to raise this issue in the House not just for them but for many, many women across the nation in similar circumstances.

National Health Service

Jim Shannon Excerpts

Wednesday 21st January 2015 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to contribute to the debate. I thank the Opposition for bringing the matter to the House for consideration. The one thing that unites the whole House is a love of our health service. We have different opinions on either side of the House, but we are united by the need for an NHS that delivers services for our constituents.

It is important to look at the regional issues affecting our devolved Administrations, but a nationwide strategy for the overarching issues facing the whole of the UK is of paramount importance. My concerns relate to barriers to accessibility and the quality of NHS provision. I shall focus on the availability of vaccinations and the issue of nationwide strategies. Sometimes we should not be parochial about the NHS, but rather consider nationwide strategies that can be put into practice across the entire United Kingdom of Great Britain and Northern Ireland.

With the undeniable strain on NHS resources and their ability to provide services efficiently, quickly and to the high standard that we strive to meet, in the past few days the Northern Ireland Assembly announced an extra £203 million for the Department of Health, Social Services and Public Safety. That will alleviate some of the pressure, but there are continuing financial demands to provide the new drugs and new technologies that are vital for the provision of essential services. It is a great pity that as a result of Sinn Fein’s delay in agreeing welfare reform measures, fines were imposed, impacting upon the moneys available.

As other hon. Members have mentioned, mental health services are struggling to deliver urgent care, particularly for younger people. Some 17% of young people have been sectioned under mental health legislation since 2010. That is an indication of the issues that permeate our whole society. For those of us of a certain vintage and those of us who are younger, the issues of mental health are clear.

Cancer care is a subject close to my heart. One in every two of us is expected to have cancer. The devolved Administration in Northern Ireland have been maintaining funding for clinical trials that will benefit the whole of the United Kingdom, but it is a challenge to find the money for that. The statistics from Cancer Research UK emphasise the prevalence of the disease: every two minutes someone in the UK is diagnosed with cancer. The NHS must deliver the necessary care.

The Northern Ireland Budget has made promising provision for health. The demand for health care is greater in Northern Ireland than in the rest of the United Kingdom. How we deliver that care, how we manage our services, and what preventive strategies are in place are all crucial aspects. The problems affecting A and E departments in Northern Ireland are as acute as those in some parts of the mainland. Education campaigns in GP surgeries and on television and radio could encourage people to use A and E departments appropriately and to consider using the other systems that are in place.

In Northern Ireland we seek to increase the number of patients participating in clinical trials, but we need to maintain the funding for that and meet the costs involved, among the many other demands on the NHS budget.

I know that the Minister is usually responsive on the issue of cancer drugs, so in his summing up perhaps he will explain why six cancer drugs have been reduced, restricted or withdrawn and how that fits in with the strategy across the whole United Kingdom.

I want to put on record my thanks to our medical practitioners and nurses for the hard work that they do. Will the Minister consider increasing the number of agency staff on a contract basis to assist in alleviating the pressures on NHS services, or will he consider some sort of scheme whereby graduates are brought in to help them gain experience and training? This would not only benefit young people who need experience, but would put more staff on hospital wards and in A and Es, and could be financed from the existing budget.

Autism: Diagnosis of Children, Hull

Jim Shannon Excerpts

Monday 5th January 2015 Commons Chamber

[Diana Johnson (Kingston upon Hull North) (Lab)]

First, I would like to thank you, Mr Speaker, for selecting for the Adjournment debate this evening the important subject of the unacceptable length of time families in Hull are having to wait for a diagnosis of autism for their children. It is an issue I have grown increasingly concerned about over the course of the past year.

I was first contacted in spring 2014 by constituents about how long they were having to wait for a diagnosis. The National Institute of Health and Clinical Excellence produced a report in 2011, “Autism: Recognition, referral and diagnosis of children and young people on the autism spectrum”, which states that

“the autism diagnostic assessment”

should start

“within 3 months of the referral”.

The three-month target has since been reinforced by a NICE quality standard on autism, but the service level agreement set by Hull NHS clinical commissioning group is for children to be assessed within 20 weeks of referral, and what is actually happening is very different: families are waiting for well over 12 months, and even for 18 months, to get the diagnosis.

I am particularly concerned about the role of Hull clinical commissioning group, whose job it is to make sure that health services are available and delivered to the local population in a timely manner. I believe the CCG is failing to do that in relation to diagnosing children with autism. It appears not to have a plan on how to tackle the backlog and is also failing to communicate with parents about how long they will really have to wait for a diagnosis. I hope that tonight the Minister will be able to reassure me and my constituents that he will take action on the growing problem in Hull—and, I believe, in other parts of the country.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter to the House for consideration. She has eloquently outlined the position in Hull. Across Northern Ireland, we have had a 67% increase in the number of individuals with autism and we have 1,300 children waiting to be assessed. The problems in Hull are replicated across the whole United Kingdom. One way in which the issue can be highlighted is, of course, through education in schools and hospitals, but the recognition of Dr Cassidy, chief executive of Autism Northern Ireland, in the new year honours list was another step in raising the profile of those with autism across the whole United Kingdom, but especially in Northern Ireland.

[Diana Johnson]

I am grateful to the hon. Gentleman for that intervention, which sets the context very well.

Let me tell the House about the experience of three families in my constituency and what the delays actually mean to families and children in Hull. Jayden was three years old when his family first contacted me. His mum, dad and grandmother were desperate to make sure that Jayden received the help he needed. His parents had tried to arrange an assessment with the autism panel in Hull. Without that diagnosis from the panel, Jayden’s parents could not access the specific local services that he needs. They were told that even if they obtained a private diagnosis from a doctor, it would not be acceptable.

Jayden’s parents have found the whole situation very difficult, and I know that Jayden’s grandmother, Mrs Spivey, has really tried hard to fight for her grandson to get the help he needs. Despite initially being told that it would take 20 weeks for a diagnosis to be made, Jayden’s parents were eventually told that in fact it would take 57 weeks. Jayden is now four years old; he still has no diagnosis and he has no speech. His family wanted him to attend the Early Bird programme, an early intervention scheme, but this is available only to children who have received a diagnosis, and Jayden is still waiting.

Thomas is 11 years old. His parents contacted me in June 2014. They believe that Thomas is on the autistic spectrum and have been trying for several months to obtain support. Thomas is high functioning and the long delay is adding to his anxiety. Thomas was referred to the autism panel in October 2013 and his parents were advised by child and adolescent mental health services that, owing to the severity of his needs, he would be seen within 12 weeks. His parents have now been told that he is on the February 2015 list to start his assessment—15 months since the referral. This is what his parents say:

“Thomas is suffering, he is an intelligent, beautiful little boy whose world is collapsing. He is confused by the behaviours he displays and cannot understand the responses which other people present. He is lonely and desperately in need of support. Likewise we are a family in crisis. We feel that Thomas deserves to know why there is insufficient funding to provide the diagnosis he so desperately needs. A diagnosis would bring him support and access to services which he needs to function.”

Thomas’s parents have had little contact from the CCG. They too were initially told that the waiting time was 20 weeks.

Isaac is three years old, and he suffers from severe social and communication difficulties. His parents requested an assessment for autism/sensory processing disorder He was referred to the autism panel in January 2014. His parents were initially told that he would be assessed within 20 weeks, but they have now been told that it will be Easter 2015 before he is assessed. Isaac’s parents were particularly concerned about applying for schools for him in September without having a formal diagnosis in place.

These families in Hull are clear examples of unacceptable and lengthy delays in a diagnosis of autism causing real stress, hardship and worry to families, as well as to the children themselves who are missing out on services and help.

Sickle Cell Anaemia

Jim Shannon Excerpts

Wednesday 10th December 2014 Westminster Hall

[Mr Pat McFadden (Wolverhampton South East) (Lab)]

It is a pleasure to debate this matter under your chairmanship, Mr Owen. Sickle cell anaemia affects an estimated 12,000 to 15,000 people in the UK and around 400 people in the west midlands, where my constituency lies. The associated condition, thalassaemia, affects around 1,000 people, although hundreds of thousands more in our country carry the trait for these conditions. They mainly, but not exclusively, affect the Afro-Caribbean community.

Sickle cell anaemia is the most common genetically inherited condition in the UK. Roughly one baby every day is born with the condition in our country. There is no known cure and for those who have it, the symptoms can vary from relatively mild, infrequent pain to much more serious episodes of crisis, frequent hospital admissions, strokes, often in very young people, organ damage and reduced life span. At the heart of the debate about treatment for the condition lies one simple question: why, with all the progress that has been made—there has been progress—is there still such variability in the treatment for sufferers, leading to enormous and debilitating pain, unnecessary and expensive hospital admissions and damaging consequences for the families of those who suffer from sickle cell anaemia?

Some hospitals and some specialist care units do a fantastic job, but patients with sickle cell anaemia do not want islands of excellence. They want an excellent system that offers high quality integrated care that minimises hospital admissions, manages pain treatment and enhances quality of life wherever they live in the country. The experience of patients, as told to me and to others, is that we are still a long way from having a system in place that delivers that standard of care wherever people live.

I pay tribute to the work of the Wolverhampton sickle cell care and social activity centre based in Bilston in my constituency and to the other patient-led groups around the country, to the Sickle Cell Society, which is the national organisation that speaks up for sufferers, and to the work of the all-party group on sickle cell and thalassaemia, which is chaired by my hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott).

[Jim Shannon (Strangford) (DUP)]

The right hon. Gentleman and the House know that people are living longer. On average, people live into their 80s or thereabouts, but life expectancy for those with sickle cell anaemia is 40 to 50, which is better than it was. Can the Minister and the NHS do more with private pharmaceutical companies to try to find a method of prolonging their life? It may not be as good as 80, but it could certainly better than 40 to 50.

[Mr McFadden]

That is a very good point. Shortened life span is one effect of the condition, and there is certainly more to do on the research and treatment fronts.

Organisations such as those I mentioned are doing a tremendous job in explaining what the condition means for sufferers, calling for more attention to it, and pressing for better training for NHS staff and a more rounded way of providing treatment. I have had extensive contact over the past seven years or so with the Wolverhampton sickle cell care group. It provides hugely needed and valuable support for sufferers, which may be anything from helping patients to deal with different governmental agencies and helping their families through crises when they have to be admitted to hospital, to a broader advocacy role. The group praises many NHS staff locally, but their biggest and most consistent complaint is about lack of understanding of the condition among GPs, A and E staff and some other NHS staff, leading to pain and delay for sufferers and bad consequences for their families.

The group told me about Sharon, a single parent of two children under the age of 10 who has full sickle cell disease and is in frequent crisis. Every time she is admitted to hospital, there is a desperate scramble among friends and relatives to ensure care for her children. There is no proper system in place to support her children, and the stress on her and her family is enormous. She discharges herself from hospital early, often before proper treatment is complete, because she has to look after her children, so the whole pattern soon begins again. Is there not a better way to manage Sharon’s pain than through frequent hospital admissions and incomplete treatment? If she does have to be admitted, should there not be a better system of support for her children?

The group also told me about a local man in his 40s who has gone for years without treatment for bleeding at the back of his eyes as a result of sickle cell disease. His sight is now at risk, but earlier treatment might have brought about a different outcome.

The Sickle Cell Society told me about a patient who was costing the NHS a fortune through repeated hospital admissions, exacerbated by the fact that her children slept in the one bed in her flat and she did not have a bed. Eventually, the charity was able to help her to buy her a bed and that made a huge difference. The cost of her hospital admissions could have paid for a hundred beds.

We will never reach the stage where no patient with sickle cell anaemia needs to be admitted to hospital, but getting the care right has the potential to reduce hospital admissions, making the condition easier to manage for the patient and saving the NHS a considerable amount of money. The fact that there is no cure does not mean that good professional care cannot make a difference.

That brings me to the national picture and the peer review of specialist care carried out by the west midlands quality review service and the UK Forum on Haemoglobin Disorders, which was published last year. The review visited 29 hospitals and reviewed the care provided. The aim of the care standards that have been developed is quite simple: there should be specialist haemoglobinopathy teams based in hospitals, backed up by a local haemoglobinopathy team. In other words, the system should have both the expertise to offer the best care and properly connect primary and hospital care. That is a good aim, but the reality is much more varied and therein is one of main causes of frustration for sickle cell disease sufferers and the organisations that speak out for them.

The peer review process found instances of excellent joined-up practice. It found committed staff going the extra mile to deliver the best care, but it also found overstretch, patchiness, breakdowns in care pathways and an unacceptable degree of variability across the country. The report says:

“Cooperation between acute and community nursing teams was sometimes very good but this was not universal. The availability of social work and psychology support was variable”.

It continued:

“In many teams there were inadequate numbers of nursing staff for the number of patients, or in some cases no acute nurse specialist at all. Even where these posts were in place they often had a very high workload which included inappropriate tasks”

such as

“filling in benefit forms…with very poor cover arrangements.”

The peer review process also found that, particularly in non-haematology parts of the system, patients

“perceived they were viewed as ‘second class’ haematology patients.”

That point about how sickle cell patients view their own experience is critical. They often feel that they are treated either with a lack of understanding or, even worse, sometimes with suspicion when they try to explain their condition or arrive at A and E in need of urgent pain relief. Lack of understanding can lead not only to poor care, but to patients feeling they have not been treated with dignity and that their need for treatment is not respected.

I do not need to remind the Minister that the very principle of the NHS means there should be no such thing as first-class and second-class patients. I do not want to see anyone treated as, or feeling as though they have been treated as, a second-class citizen. The whole basis of the NHS, paid for collectively with treatment on the basis of need, is that everyone is a first-class citizen. If there are sufferers of a genetically inherited condition who do not feel they are being treated as such, that is not acceptable and something we should take very seriously indeed.

Another issue identified by the peer review process is poor quality of data. That leaves us unsure about the number of sufferers and unsure, beyond emergency admissions, about the resources devoted to treating the condition. How can we ensure that there is the right treatment if we do not know how many sufferers there are or where they are? What is the Minister doing to improve those clearly identifiable data problems?

The peer review made a number of good and important recommendations about access to specialist care, staffing levels, training, psychological support and managing the important transition between paediatric and adult care. Those issues are absolutely central to the experience of sickle cell patients. Can the Minister tell us this morning what is happening to those peer review recommendations? Will he undertake to go through them not in a general way, but point by point, and to give a progress report to the House if not today, then soon and in writing? Such a report would be welcomed by sufferers and would ensure that there was follow-up on these important recommendations.

Then there is, for patients, the basic cost of living with the condition. To live with sickle cell is to live with pain, and that often means frequent prescriptions. For some patients, the cost can be prohibitive. This is not just a matter of money, but of behaviour. If people do not use their pain relief efficiently because they cannot afford more, it can affect their condition. I appreciate the cost pressures on the NHS, but will the Minister agree to commission a departmental analysis on whether free prescriptions for sickle cell sufferers would cost money or lead to net savings because they would reduce avoidable hospital admissions?

What of how sickle cell care is to be delivered in the future? NHS England is currently the body responsible for commissioning care for rare diseases. That is sensible, because sufferers might be concentrated in different parts of the country and sometimes there may be few sufferers. However, a review is taking place into how that will be done in the future, the results of which are due next year. There are three possible models: continuing with national commissioning, co-commissioning with clinical commissioning groups locally, or leaving it all to CCGs. Given that concern already exists about the large variation in the quality of treatment, knowledge of the condition and the priority given to it, sickle cell organisations fear that a move to only local CCG commissioning will exacerbate the problems. Can the Minister ensure that the way treatment is organised in future is in line with the central aim of the peer review exercise—to deal with the variability of treatment issue—rather than its being organised in such a way as to make it more difficult? I repeat that our aim should be a system that makes the best the norm, rather than balkanising care and creating a lottery, depending on where sufferers live.

Sickle cell anaemia is an issue that deserves more attention than it has received and a greater priority in the delivery of high-quality health care. In some ways, it is less about knowing what the best care looks like and more about ensuring that it is delivered to the highest standard throughout the country, regardless of where patients live. The condition also requires some smart, joined-up thinking between different agencies. Repeated hospital admissions because of a lack of a bed to sleep on is not a smart way to deal with a condition such as sickle cell.

Sufferers have to put up with a life of pain, but good treatment, the right information and the right lifestyle can make an enormous difference. That treatment, information and help vary so much is not acceptable. Dignity and respect are essential for all NHS patients: sickle cell patients feeling they do not always get that should be a concern for us all. It is time we ensured that the best care is available to all sufferers, delivered by a system that understands the condition, fully respects the patient and allows sufferers to live as full a life as possible. I hope the Minister can respond to the issues I have raised today in a way that makes that more likely. On the issues for which he does not have immediate answers, I hope he will go back to the Department and press his officials to make sure the changes we know are needed happen.