National Health Service (Amended Duties and Powers) Bill

Mark Durkan Excerpts

Friday 21st November 2014 Commons Chamber

[Andy Burnham]

The example that my hon. Friend quotes is the best example of the fact that the Government see no limit at all on the scale or extent of privatisation in the NHS, both in terms of the monetary value— £1 billion—and the fact that they are prepared to put cancer services out on the open market.

[Mark Durkan (Foyle) (SDLP)]

Does my right hon. Friend recall that some of us supported his opposition to the Health and Social Care Bill, which purported to be England-only legislation? By its marketisation and altering of the public service ethic for the health service, it was going to be predictive legislation with severe implications for devolved services. For similar reasons we support the Bill today, because it offers a bulwark against TTIP hazards for devolved health services.

[Andy Burnham]

The Bill before us deals comprehensively with that threat from any proposed TTIP treaty. I am glad to see the hon. Gentleman in his place today.

Organ Donation Register

Mark Durkan Excerpts

Tuesday 17th June 2014 Westminster Hall

[Mark Durkan (Foyle) (SDLP)]

Thank you, Mr Hollobone, for calling me to speak. It is a pleasure to join in this debate under your chairmanship. I pay tribute to the hon. Member for Burton (Andrew Griffiths) for introducing the debate in a sensitive but passionate way.

I recognise that the hon. Member for Montgomeryshire (Glyn Davies) and I may come at this issue from slightly different perspectives, and may put slightly different emphases on the issues of presumed consent, opt-outs and soft opt-outs, but there is absolutely no difference between us—or between any of us who are present—as regards our fundamental motivation, which is to secure the optimum number of organ donations, and the optimum benefits for the lives of so many of our constituents.

Like other hon. Members, I have personal experience of this issue. I had a friend who, many years ago, benefited from a kidney transplant provided under the fairly primitive arrangements then in place in the grounds of the then Belfast City hospital. It did not seem to be the most propitious setting in which such a significant life-improving operation could take place, but it was life-improving, thanks to the skill and commitment of those involved. Of course, services have developed in so many ways since then.

I have seen a number of people in a family suffer from cystic fibrosis; that family lost children who died while waiting for transplants. Like others, I have made commitments and promises to do everything that I could in any opportunity that fell to me in public life to improve the prospect of more transplants being available for people in such circumstances.

I have also seen people take some consolation in their bereavement and grief from the organ donations of their loved ones, which has meant that someone else has had the gift of life, or improved life. Obviously, I have also seen people who have benefited from organ transplants, although perhaps not for as long as they would have wished. Again, those benefits will be achieved and extended if we can develop and improve the services of those very special skilled people who are involved in delivering the benefits of transplants to people.

I also speak as someone who witnessed, as we all did in Northern Ireland, an act of altruism by a fairly public figure, Joe Brolly, a brilliantly skilled sportsperson and all-Ireland championship winner who played for Derry back in the early 1990s. He donated a kidney to help a friend, Shane Finnegan, whom he had met as a volunteer coach in his local Gaelic Athletic Association club in Belfast, because he knew the difference that it could make. Unfortunately, the transplant has not worked out for Shane, but the cause goes on. Both Shane and Joe are absolutely united in encouraging politicians and legislators in Northern Ireland and elsewhere to achieve more progress on organ donation. They are categorically in favour of moving towards a soft opt-out system.

All of us are sensitive to some of the concerns that are feeding back to us in that regard, however. I was in this Parliament back in 2008, and was supportive of the initial indications coming from the organ donation taskforce, but we were all sensitive to the issues and considerations that came back to us. We want to move forward on this issue, and to achieve progress that is sustainable and durable, with no unforeseen consequences or counter-productive effects. I believe that presumed consent leads to higher donation rates, but the way that it is framed is important.

I note the important point, made by the hon. Member for Burton, that the current opt-in system is essentially a soft opt-in, in that families are able to override it. It might be more productive to discuss and take forward some of the issues connected to the soft opt-out, rather than to go for a hard opt-in; the latter might be more difficult and could create other issues or difficulties, particularly given the point made by the hon. Member for Strangford (Jim Shannon) about the apprehensions or misgivings that are shown in survey research to underlie some of the concerns and reservations that kick in whenever people are asked to think beyond whether they simply support organ donation in principle. When they think about it in practice, reservations or concerns seem to come into play, and all of us who might have a different perspective on how to legislate on this issue need to be sensitive to those concerns. We should not conduct the debate in such a way as to create mixed signals, or leave people thinking that there might be something untoward going on in relation to how organ donations are secured.

It is important to respect the fact that there will be legislation at different levels, not just within the UK but within these islands. The Welsh legislation has been cited, and the Irish Government are committed, under their programme for government, to legislate for a form of soft opt-out. In arguing about the different legislative choices, we need to be careful that we do not send out messages that create any doubts or difficulties.

Steps taken here since 2008 have achieved a much higher rate of organ donation. If the legislation in Wales achieves a higher rate of donations, and if legislation in the Republic does the same—there is also a consultation going on in Northern Ireland—we need to remember that those organs may not necessarily all be used within the jurisdiction in which the relevant legislation has arisen. That is another consideration. If we are to optimise not just the number of organ donations but the number of people benefiting from donations and transplants, we need to look at the networks, systems and infrastructure, to make sure that we fully utilise as many organs as are donated. Some organs are available on a so-called national basis, and others on a regional basis. That creates a disparity in terms of benefits and effects.

One concern I have heard about whether organ donation was worth while came from a constituent, who told me that they had watched a TV drama—I am not sure whether it was “Holby City”, “Casualty” or something else—in which being able to get the relevant organ for donation came down to whether a doctor in one hospital knew somebody in another hospital. My constituent was concerned about the idea that whether the organ donation system actually worked could come down to something so coincidental; they were left thinking that the system was not that sophisticated, and was hit and miss. I do not know whether that anecdote is accurate. If it is, it proves that there is a need to improve networks; if it is not, it proves that broadcasters and others need to be careful about the kinds of indications and suggestions they give about topics such as this, and should not use dramatic licence in a way that gives people cause to doubt the efficacy of the transplant system.

The British-Irish Council takes in all eight Administrations around these islands who legislate and provide services in different ways. It seems to me that it would be a good forum in which to not just discuss the balance, comparability and compatibility of legislative arrangements throughout those jurisdictions—the more consistent they are, the better—but make sure that we optimise the networks, so that organs that become available in any one part of these islands can benefit anybody in any other part. It should not be left to a random mix of different networks, as that sub-optimises the use of organs. They are given for the best of motives, so we need to make sure that we have the best arrangements to extend the benefits of these important gifts.

[Mr Philip Hollobone (in the Chair)]

We have 23 minutes left, so if the Front Benchers will split the time between them in a fair and equitable way, it will be much appreciated.

Oral Answers to Questions

Mark Durkan Excerpts

Tuesday 25th February 2014 Commons Chamber

[Mark Durkan (Foyle) (SDLP)]

In the Minister’s earlier answer, was he saying that enriched culture medium testing is not a safe, simple and effective test for group B strep carriage?

[Dr Poulter]

We have had many debates in this House about group B strep and the effects of the disease. The point about enriched culture medium testing is that it takes time for bacteria to grow in culture, and the fact is that there is also evidence from the Royal College of Obstetricians and Gynaecologists. Public Health England has looked at that evidence and it has decided that it is not a test that is effective to be introduced during pregnancy. That is the medical evidence and we have to be guided by it. There are many other things that we need to do about group B strep, not least supporting the development of a vaccine, which is ultimately the best way forward.

Children and Families Bill

Mark Durkan Excerpts

Monday 10th February 2014 Commons Chamber

[Ian Paisley]

I was not suggesting that it was mandatory, but it does say that people should not do it. Rule 148 is very clear that people should not do a crossword, read a map, eat a sandwich or smoke while driving.

That takes us back to the crux of the matter. A person who lights up and smokes in front of a child—I hope the hon. Gentleman will accept this—is a prat, in my view, and we as a House should not be legislating on that, but educating. What we should really be engaging in is educating people. We do not require legislation to educate people not to be prats and to be sensible.

The number of people involved is minuscule, so is it right that this House is taking time, money and effort to legislate on such a minor problem? I do not believe it is.

[Mark Durkan (Foyle) (SDLP)]

The hon. Gentleman says that the number of people smoking in cars with children present is minuscule, but he has produced no evidence to back that up in relation to the UK. If the number is so minuscule, why is the provision so disproportionate and excessive and how would it make enforcement impossible in the way he suggests?

[Ian Paisley]

Let me take one of the facts raised by Labour tonight. According to tobacco consumption rates in the United Kingdom, 22% of people smoke in the Liverpool district, but according to the statistic put in front of us tonight, 25% of all children are subject to being in front of smokers. The number of people smoking is, therefore, higher than the Government statistics show. We need more clarity on the stats being put about by Members on both sides of the House. Labour and Government Front Benchers should wait, as they said they would in November, for the outcome of the Cyril Chantler independent review. If we wait for the gathering of evidence that we can all accept, we will be in a much stronger position to make the decision we are making tonight.

I am also concerned about the plain packaging measures, which will decimate an industry. There is not sufficient evidence to show that they will do what everyone wants them to do, which is to stop people smoking. A pound store I visited sells boxes for people to put their fags in. It is even possible to get ones that say “Vote Labour” or “Vote Conservative” on them. Believe you me, Mr Deputy Speaker: whenever cigarettes are sold in the future under this provision, these boxes will be given out freely by certain companies because they will take away the one warning that we do know is important, which is that smoking kills. Tonight we are putting in place an opportunity for people to cover cigarettes with no warning whatsoever.

The biggest problem that this country faces on tobacco is the illicit trade: 25% of all cigarettes smoked in the United Kingdom tonight will have been smuggled by criminals. We as a House should do something, on a united basis, to wipe out such criminal empires, instead of making it easy for them by giving them plain cigarette packages that are simpler to print, smuggle and get into the hands of children. That should be our real cause and health concern.

Early Childhood Development

Mark Durkan Excerpts

Thursday 30th January 2014 Westminster Hall

[Jane Ellison]

The hon. Lady will understand that that is not in my portfolio, but I am happy to draw her concerns to the attention of colleagues in whose portfolio it rests. I undertake to do so after the debate.

The Under-Secretary of State for Health, my hon. Friend the Member for Central Suffolk and North Ipswich, has asked Public Health England to commission a rapid review of the evidence base for the Healthy Child programme, with a focus on primary prevention. The Department of Health is also working with the WAVE Trust, which was instrumental in developing the evidence base for the manifesto, with the Early Intervention Foundation and with others to explore how valuable work in prevention can be built upon. We will be interested in the outcomes of that evaluation.

[Mark Durkan (Foyle) (SDLP)]

The Minister has referred to looking at the issues by drawing on data and evidence that are available in the English context. As well as sharing that, importantly in this context, will she ensure that questions in the “The 1001 Critical Days” manifesto are addressed at the level of the British-Irish Council? That would enable all eight Administrations throughout these islands who face such challenges in common to share their experience, good practice and piloting. The work could be elevated to that level rather than all the different Administrations trying to do the same things back to back.

[Jane Ellison]

The hon. Gentleman makes a good point, and I have regular dialogue on matters in my portfolio with Members of the devolved Administrations. I am happy to look into that point after the debate, because some of the lessons to be learned are universal across different countries in the UK.

There has been a lot of interest in health visitors. They and their teams lead the delivery of the Healthy Child programme, and of course they are the bedrock of our children’s public health services. They are often the first professionals to recognise that a mother is depressed or that parents are struggling with the negative effects of many sleepless nights; we have had a few descriptions of those from colleagues in this debate. Through their work, health visitors can have an impact on the well-being of the whole family. Because of their vital preventive role, the Government are committed to growing the health visitor work force by 4,200 by the year 2015 and to transforming health visiting services to improve outcomes and reduce inequalities in the nought-to-five age group.

Taking up the point about whether recruitment is on track, and weaving in the point made by my hon. Friend the Member for South Northamptonshire, we believe that we are on track. There have been a couple of challenges in one region, to which we are now responding, but the rate of increase in health visitors will increase. It is determined by training intakes, which determine the rate of qualification and entry into the profession. We are happy that that is on track. I give that assurance to the shadow Minister. The latest health visiting work force data that we have, which are from October 2013 and were published this month, show that the total number of health visitors nationally is 9,770 full-time equivalents. Overall, there are 1,678 more health visitors than the May 2010 baseline of 8,092. That is a growth of 21%, but we intend to grow that number more, as we have said, because we think it is so important and crucial to the aims of the manifesto.

On troubled families, we know that some families have multiple problems and cause problems in the community around them. I will not go into a lot of detail, but there is clearly relevance and read-across from some of the early years issues that we have been discussing in this debate. In particular, I have seen the Troubled Families programme in my area encouraging critical working together and getting everyone around the same table to consider people and families as a whole.

That programme will have done a great deal of good to embed that idea and approach as good practice for many local authorities. There is a strong read-across to the other things that we are discussing about earlier years, and in some cases, of course, they will be the same families, depending on the nature of the family. I have certainly seen in my area, and in lots of the other pilot areas, how services have embraced the opportunity to stop working in silos and consider a whole family’s needs instead. I hope that that will become orthodoxy in how we move forward with Government policy in numerous areas and in the local government approach to things.

The Government are increasing local authority budgets by £448 million over three years on a payment-by-results basis to support troubled families across England. Again, my ministerial colleague is meeting those involved in the Troubled Families programme to discuss the health contribution to this valuable programme, and he can then address some of the points to which I will draw his attention as a result of this debate.

I do not have time to go into much detail, as I am aware that I have already made a long speech, although I am drawing to the end of it. I have many points to respond to, but I wanted to touch on the points about social mobility made by my hon. Friend the Member for East Hampshire (Damian Hinds), which I have heard him articulate before. He discussed how to support parents. I think that my hon. Friend the Member for South Northamptonshire was present when Alan Milburn, presenting his most recent social mobility report, urged Government and politicians generally to break what he called one of the “last taboos” of public policy, which is telling people how to be good parents and supporting them to be good parents. That is an interesting challenge for us all to consider and respond to, because it is undoubtedly difficult terrain for both Governments and individual politicians.

Hospices (Children and Young People)

Mark Durkan Excerpts

Wednesday 18th December 2013 Westminster Hall

[Mr Burns]

The hon. Lady makes a valid and important point, which comes as no surprise, given her distinguished professional work before coming to this House after the Rotherham by-election. It is about continuity of care. Just because someone reaches a cut-off point in their age and lifespan, they should not necessarily—automatically—have to change from those who have been providing their health care up until that point. The individual’s needs and requirements might progress or change so that their consultant or other health care practitioner needs to change because of the skills that they have, but that is a totally different argument. I hope that my hon. Friend the Minister and the Department of Health as a whole will look at the matter to see how we can provide greater continuity of care from health care professionals where that is appropriate, so that there is not an arbitrary cut-off point.

I do not want to detain hon. Members much longer, because I know that others want to contribute, but I do think that we must bear this in mind. Fantastic work is going on, as has been shown by a number of interventions and speeches during the debate, in children’s hospices and, equally, in adult hospice care, but let us concentrate more on developing for the young people in the 18-to-40 age group provision that meets their specialist requirements, so that they, too, can have provision and quality of care that is tailored to their requirements and demands.

[Mark Durkan (Foyle) (SDLP)]

On the point about supporting people in the age group to which the right hon. Gentleman refers, does he agree that it is important for Government at all levels to encourage not just the hospice movement, but housing associations and good providers of sheltered housing models and supported housing models to think about how they might style particular developments and units precisely to accommodate people in that age group, so that they can live in a supported context but have premises that guarantee them more independent living, which is more appropriate to that age group?

[Mr Burns]

I am very grateful to the hon. Gentleman, too, for that constructive intervention. I know that, particularly in health debates, the term “holistic approach” is for ever used and can become rather hackneyed, but I do think that such an approach is crucial both in general health care in the NHS and in specialist areas such as palliative care, hospice care and end-of-life care. There really must be an holistic approach, and this is not simply about different sections of the health care community. As the hon. Gentleman says, it also involves housing and, as the hon. Member for Rotherham (Sarah Champion) said, the benefits system, where that is appropriate, for a number of people, because it is at this time in someone’s life and the life of their family and friends that they want the minimum amount of hassle, as they are going through some of the most difficult parts of their lives or their loved ones are. We want to minimise the extra pressures, concerns and worries, and that can be done through a more joined-up, holistic approach to the whole provision of care.

I know that the Minister will be listening very carefully to the comments made in the debate. I know that the Department of Health is extremely committed to the whole area of palliative care, end-of-life care and the hospice movement. I know that my hon. Friend will go away from the debate, reflect on a number of the points that have been made and do her best to help to address a number of the issues that I and other hon. Members around the Chamber have raised in the course of the debate.

Rare Diseases

Mark Durkan Excerpts

Tuesday 17th December 2013 Westminster Hall

[Jim Shannon]

I agree entirely with my right hon. Friend. We have experience of those deficiencies in the health service—we are not immune from them in Northern Ireland. In this House, I always try to extol the health service in Northern Ireland and the good things that we are doing, but there are times when we fall down, and times when we have to improve. My right hon. Friend is absolutely right that there are things that we would like to see done better, and we endeavour to make sure that happens. We have a devolved Administration and a Health Minister in Northern Ireland, so we have an opportunity to make that happen. We have seen lots of changes for the better in the health service in Northern Ireland.

Patients’ uncertainty about who to contact can mean that they do not receive the information and support that they need or that they have to tell their story over and over. I have often told the story of the gentleman I mentioned, and other people’s stories as well, but I still have not got the answers that are needed. My goodness, but it is frustrating for the people concerned, and it is also frustrating for me, as an elected representative. People can feel lost in the health care system.

It has been outlined to me that any strategy must include the development of a generic care pathway to facilitate the delivery of best practice to all rare disease patients, not just those who have a specific service specification; an appropriate care plan for all patients with a rare disease; clearly stated principles about the standards of care that patients with a rare disease can expect, including patients with no diagnosis; and the development of seamless pathways for transition, from childhood to adolescence and on to adulthood and older age. How does the Minister feel we can put such a strategy into place?

We must ensure that there is evidence-based diagnosis and treatment of rare diseases, as without accurate diagnosis, appropriate screening programmes and targeting of diagnostic tests, patients and families cannot access effective treatment or therapy, or manage their condition appropriately. All those things are important to the person who is living with such a disease every day of their life. A delay in diagnosis, or a misdiagnosis, could also involve multiple avoidable appointments with doctors and consultants, incorrect treatments and diagnostic tests, and significant distress. I hate to talk about money but it is an important factor in how the health service works, so we have to consider it. If we can do things more efficiently and effectively, let us do so, and deliver a better service, without some of the current bureaucracy and paperwork.

The UK rare diseases strategy represents the first time the four nations of the UK have come together to recognise and respond to the needs of rare disease patients systematically and structurally. It follows the founding principle of the NHS that treatment should be a response to need. The NHS is an organisation that we love and have great pride in—a pride that was mentioned in the House yesterday—and we want it to deliver across the whole spectrum for everyone. The rare disease strategy essentially gathers a set of 51 commitments that all four nations in the UK could agree to implement. When the Minister responds will he tell us how the 51 commitments will be achieved—will there be follow-up regulation and monitoring to make sure that they all take place?

Regrettably, few of the commitments require the four nations to work together on rare diseases. I find that a wee bit hard to understand. We should be exchanging expertise. If in Northern Ireland we are more expert on one aspect of treating rare diseases, let us do that part; if someone in Wales, Scotland or England is more expert on another aspect, let them do that part. Let us exchange our knowledge with each other to take the strategy forward. For high-quality care to be available to all patients with rare diseases across the UK, such collaboration needs to improve and increase.

[Mark Durkan (Foyle) (SDLP)]

I commend the hon. Gentleman on leading the debate. On the issue of co-operation and co-ordination across the UK, does he agree that the issue of rare diseases could be taken up for focus work by the British-Irish Council? As that body represents all eight Administrations within these islands, not just the devolved regions of the UK and Whitehall, its involvement could help to foster a sense that across these islands there is an open faculty of all those who are trying to specialise in improving the treatment and care of people with rare diseases.

[Jim Shannon]

I agree with the hon. Gentleman. The Teenage Cancer Trust already has 27 units working across the whole of the United Kingdom and Ireland. Bodies are already working across the borders, so to speak. As I said earlier, if someone in the Republic of Ireland or someone somewhere else in Europe has knowledge and expertise, let us galvanise our approach and work together.

It is in the area of rare diseases where the value of resource and service sharing can most easily be seen. The population size and distribution in each of our four nations vary tremendously, as do the health care needs, and there are significant efficiencies to be gained from sharing the burden between the four health services.

The Brittle Bone Society has highlighted that there needs to be a clear commitment to develop a fully functioning and properly staffed transitional service offering all the multidisciplinary services needed for all-round care at this life stage.

There should also be consideration for other departments, such as mature or older well women and well men clinics. Charitable patient organisations may be resource-poor, and it takes time, care, consideration, planning logistical preparation, communication, and an effort to inform and advise members to recruit them to take part in vital surveys, research trials and other invaluable projects.

Research into and development of new treatments and medicines for rare and very rare diseases, known as orphan and ultra-orphan medicines, is an important feature in medical research and the life sciences sector. A large number of products have been developed or are in development to treat rare and very rare diseases. Such research can provide valuable insight into the treatment of conditions that affect large numbers of people. Research and development must be enhanced to provide hope and an answer for those who are suffering from such diseases. The fact that the number of people who suffer from a disease is small must not detract from the fact that a child or adult in the UK is suffering, and we must do all that we can to alleviate that.

The Specialised Healthcare Alliance has sent me some helpful information. It refers to highly specialised services for the rarest conditions, some of which we may never have heard of—apart, perhaps, from a mention on TV, which will probably have been the first we have heard of it—but unfortunately they are occurring more often. There are some 500 patients in England and some 600 patients across the whole UK. Such illnesses and diseases are complex and need the highest level of expertise and knowledge to address. The alliance states:

“Many patients in Northern Ireland, Wales and Scotland depend upon the quality of English highly specialised services for their patients, given the very small number of centres that can sensibly provide these services.”

That goes back to a point that I made in the beginning: we are dependent on England being the driver for the issue, and on NHS England as the organisation that we follow in Northern Ireland, Scotland and Wales. The alliance also refers to “properly funded administrative support”. These are issues that it would like to see taken forward. It also says that the problem of capacity in the system has to be addressed to ensure that resources are there and that opportunities for specialised services are and can be delivered.

An example of the need to work together in the regions can be found in the fact that there is a regional variation in post-bone marrow transplant care. Patients who have received a transplant will face a range of severe and debilitating late effects, as well as life-threatening infection, due to the nature of their therapy. Those complex needs have to be managed by a transplant clinician in a late effects clinic, in which the co-morbidities can be considered with a full range of treatments by a specialist team. Without security of funding, a transplant centre cannot provide that service, so variation will creep in where follow-up care is commissioned by clinical commissioning groups.

Only small numbers of people receive transplants—1,440 in 2011. A nephew of mine has received a transplant, which transformed his life greatly. We are thankful to the donor for making that happen. It was not always plain sailing; sometimes there were backward steps. Has the organ been accepted by the body? Was there medication to ensure that that happened? At the end of the day, he is a bright young man today, and doing very well due to his kidney transplant. Many years ago, it would not have seemed possible, but we now have the opportunity to see a young man who has done extremely well through a transplant. There is a clear argument for NHS England to foot the bill to ensure the security of the service. Furthermore, it should ensure that the right type of care is available by drawing up national guidelines on what constitutes a late effects clinic to eliminate variation.

Time has beaten me, and I want to give others the opportunity to speak. I am not going to go into any further detail on the issue. Although the key commitments are welcome, there are fears of how they will work in reality. The Department must work with other Departments regionally to ensure that not only are those commitments realised, but that there is no longer a regional disparity in service provision. I commented on regional disparity yesterday in relation to the debate in the Chamber, and there is also a clear regional disparity on this topic. How can we achieve this funding and heart? The rare disease groups have shown that there is heart in abundance. Those organisations have spoken to hon. Members present and other hon. Members, who are unable to attend. However, we also need Government commitment to funding. Perhaps today we will get the assurance that that is forthcoming.

--- Later in debate ---

[Mark Durkan (Foyle) (SDLP)]

I commend the hon. Member for Strangford (Jim Shannon) on introducing the debate, which is taking place just a few months after the all-party group on muscular dystrophy concluded its inquiry; I took part in some of the evidence sessions. The group expressed the concern, which has been voiced in the debate, that some of the changes that are afoot could imperil some of the good, concentrated work that has been done on rare diseases. There is a fear that the confused migration of various functions and tasks means that some of the specialist focus over the past few years has been lost.

The Government have argued that there will be new approaches, and they have said that the UK strategy would help to take care of some issues, creating a new focus on rare diseases. However, they also said that the £50 million specialised services commissioning innovation fund would be used to support work on rare diseases. Only a month after the all-party group reported with its concerns, that fund was essentially withdrawn because of other funding pressures. The statements and assurances that we get do not add up. The fears and apprehensions of many of the rare disease campaign groups and others, including Members and all-party groups, are reinforced by the apparent confusion.

The Government need to do more to give the rare disease strategy credibility and traction. In an intervention on the hon. Member for Strangford, I talked about what was needed, in addition to work at the UK level, to get better co-ordination between NHS England and the various devolved health services. Besides each responsible health service area doing its bit, there is a need for real collaboration that transcends those areas. Indeed, I see that happening beyond the UK; I see it spanning the whole of the British-Irish Council, which includes the Republic of Ireland, the Isle of Man and the Channel Islands. There are people with rare conditions in isolated parts of these islands, and the idea of combining our efforts on rare diseases and trying to achieve an economy of effort that would not be possible within one jurisdiction or health authority is important. The British-Irish Council is ready made to bring added emphasis and commitment to such areas.

It is important to do more than just pledge greater co-ordination and prioritisation for rare diseases; another issue to be dealt with is resources. As individual health authorities find it harder to guarantee a competent concentration of commitment to rare diseases, we must find critical mass at a higher level that transcends the health authorities and the devolved health service areas. That is why the UK strategy is an important concept. The 51 commitments are strong and sound, but there are questions about whether they will, in practice, add up to a full strategy, if they are left to the interpretation of each area individually. At times, there seems to be confusion about when NHS England is driving for the UK as a whole, and when it is in the lead simply as a matter of quantum—because it is the biggest. I am not sure whether there is a full strategy and co-ordination plan, and we need to continue working on that.

Some hon. Members have mentioned excellent work done in various locations, some of which depends on the skilled and dedicated leadership of clinicians, who may move to other posts. We should not take it for granted that the excellence achieved in some places will be sustained and maintained. That is a challenge, not least in the area of rare diseases. People progress professionally and move on, and sometimes the services that they leave are not sustained and maintained with the same quality. That is why—to return to the idea of co-ordination and co-operation across the UK, and more widely across the British-Irish Council—I argue for a central, open faculty. Then the clinicians who provide treatment for, or do research on, rare diseases may not feel that they are working on in isolation, feeling nearly as lonely as some sufferers; instead, they may feel part of a working, open faculty, in which they can connect with other professionals and patients.

I commend the Government and devolved Administrations on formulating the strategy so far, but funding is a fundamental question. We need significant challenge funds to be available, so that specialists who respond to particular patients, identifying needs better and coming up with innovative treatments, are not left trying to busk around within their local health service, trying to get a bit of funding here or there. The fact that the £50 million innovations commissioning fund was an early casualty in the reorganised NHS does not give great encouragement. More needs to be done.

The Minister with responsibility for care is responding to the debate, and as the hon. Member for Plymouth, Moor View (Alison Seabeck) said, few of the rare diseases we have been considering have outright cures or treatments; for many with such diseases, the approach is supportive therapies and coping support. My remarks have concentrated perhaps more on clinical leadership, but care and support are also hugely important. I know that the Minister will be conscious of that. Aspects of what I mean include setting good models and examples of practice and experience; helping individuals—particularly the young people who are sufferers of so many of the rare diseases—and their families; and thinking about improving care networks and the meshing of services, so that people who provide services, whether in education or family support, understand better what rare diseases may entail, and their possible life-cycle variation during the life of a child. People who provide social and education services cannot readily make themselves experts in the conditions in question, and often they confuse conditions whose names sound the same, although they are very different in character, and give rise to different demands and behavioural consequences. Wider support is needed.

Finally, the Government need to take account of the context of welfare reform and changes to several benefits, and the fact that every so often, people must reapply and prove their case for benefits again. That is particularly hard when people have rare diseases. Those people and their families should not have to spell out their condition again, in all the medical jargon, and explain it. They should not be made to jump through those hoops. We should find a better way in the social security system of showing understanding about rare diseases.

[Jim Shannon]

The time it takes to process an application is frustrating for the person concerned—and it frustrates me and other hon. Members, too. In special cases such as those involving rare diseases, I have had to go to someone at the top of the tree in Northern Ireland, to expedite the process. Does the hon. Gentleman think that people with rare diseases should be put in a fast queue, to be processed more quickly?

[Mark Durkan]

I think they should be put in a “not to be neglected” queue, rather than a “too difficult for us to sort out now” queue. The problem at the moment is that if an applicant’s condition is deemed very rare or complex, instead of their case being given added attention and urgency, it is allowed to silt up. That can happen with medical treatment and the opportunity for further diagnosis, which often requires travel outside the jurisdiction, and with the social security issues that I have mentioned, and on which I want to finish.

The Welfare Reform Act 2012 contained provisions that seemed to assume that many people with lifelong conditions would suddenly improve and not want to let on about being cured. It is a bit much when families who have their hands full supporting someone with a rare condition—particularly a child or young person—as well as supporting other family members, must constantly jump through hoops for a system that is supposed to support them and understand their needs.

[Alison Seabeck]

Will the hon. Gentleman accept that there are also issues about the way in which general health funding is distributed? In Plymouth, we have a very high prevalence of rare diseases, perhaps linked to the heavy industry that we have had, yet we get half the funding per person that is seen in Windsor and Maidenhead, for example. Will he accept that that also needs to be revisited?

[Mark Durkan]

I absolutely accept that point. It also came through in the earlier inquiry work on some of the concerns voiced by the all-party muscular dystrophy group. That goes back to the point that I made about funding.

The real test of whether a strategy is coherent and effective is what happens when it comes to funding. We can have many good statements of intent. There are 51 commitments, which are very strong and sound. It all sounds great, but does it translate into money being available for support and treatment or, as happens with approving new drugs, does the finance test get in the way of support and treatment reaching people? The cost-effectiveness criteria used either by the National Institute for Health and Care Excellence or by the Joint Committee on Vaccination and Immunisation raise questions. Particularly in relation to rare diseases, if the test is almost that a possible new treatment has to throw two sixes to start, in circumstances in which people do not even have any dice, it is a serious problem. Although the rare disease strategy is a good start, it is only that—a good start. It will need more work and more resources, and will need to be informed by further research.

[Hugh Bayley (in the Chair)]

We now come to the winding-up speeches. I remind both Front Benchers that we have just under half an hour left.

Tobacco Packaging

Mark Durkan Excerpts

Thursday 7th November 2013 Commons Chamber

[Paul Burstow (Sutton and Cheam) (LD)]

I rise as chair of the all-party parliamentary group on smoking and health. I congratulate my hon. Friend the Member for Harrow East (Bob Blackman), a fellow officer of the all-party group, on securing this important debate, which is an important opportunity for the House to continue to put pressure on the Government to move on this issue. I am a co-sponsor of the debate. It should come as no surprise that the APPG strongly supports effective action to reduce the harm that is caused by tobacco. I welcome the contributions from the hon. Member for Stockton North (Alex Cunningham), my hon. Friend the Member for Harrow, East and the hon. Member for Barnsley Central (Dan Jarvis), all of whom set out compellingly the piles of evidence that show the effectiveness of standardised packaging as a further aid to tobacco control and reduction of the harm that tobacco does. That surely has to be a key goal of public health policy in this country.

Reducing the number of people dying from preventable disease and of people living with chronic disease has to be a key part of what this debate is all about. How do we address that? By tackling risk factors—in this case, the risky behaviour of taking up smoking in the first place. A variety of interventions can make a difference. In this country over the past few years, parliamentary action and parliamentary pressure have persuaded Governments to do something. I congratulate the right hon. Member for Rother Valley (Mr Barron) on his initiative when he was Chair of the Health Select Committee to enable the Labour Government to bring in via a free vote the ban on smoking in enclosed public places.

No Government have a particularly good record of leadership in this area. Most Governments tend to have to be led by this place. That is why we are having this debate today, and I hope the Government will take their lead from this House and the other place, because both Houses have a cross-party unity of purpose in addressing these issues. We have seen that progress over the years.

Over the past 15 years the combination of measures has made a difference. Smoking prevalence has fallen among adults by a quarter and among children by as much as half. More clearly remains to be done, as the debate so far has demonstrated. Smoking is still a major cause of preventable disease and death. It far outweighs the next six major causes. When it comes to public health and to children and young people, we have a special duty, over and above that which we owe to all our fellow citizens. That duty is clear: we should act. Above all, standardised packaging is about protecting children and young people, as has been said in this debate.

Big tobacco must attract children. Why? Because its product kills 100,000 of its customers every year in this country, and it needs to replace those dead customers. The evidence is clear. Smoking is a childhood addiction, not an adult choice. We need to understand that. Some 40% of smokers are addicted by the age of 16, and two thirds are addicted by the age of 18. Two hundred thousand children take up smoking every year and about 530 of them do so in my borough, the London borough of Sutton. Very few people start smoking over the age of 20, as we have heard.

The focus on the recruitment of children has been admitted by big tobacco. The tobacco industry knows how sensitive children and young people are to brands of all sorts. Removing the brightly coloured packaging has been shown to make a difference. It has made those products less attractive to children.

[Mark Durkan (Foyle) (SDLP)]

The right hon. Gentleman rightly emphasises addiction, but have we not heard, even in this debate, that this is addiction marketed as freedom?

[Paul Burstow]

Absolutely, and that is the most pernicious part of it. It is addiction posing as freedom of choice, whereas once they are addicted, people have lost their freedom of choice, and it is very hard to step back from that.

Cancer Patient Experience

Mark Durkan Excerpts

Wednesday 30th October 2013 Westminster Hall

[Jim Shannon]

I thank my hon. Friend for that comment. In my constituency, we have a young carers organisation that also works with adults. I have met some young carers and am aware of young sons and daughters who look after mothers, fathers and other siblings. We could not do without them. We are ever mindful of their experiences. I know young carers, my hon. Friend knows them and I suspect that everyone in the House knows individual young carers.

Some people may ask how the cancer experience can ever be positive, but although going through cancer will always be horrific, the care that is given can and does impact upon how a patient feels. The Macmillan report states:

“Good patient experience is closely connected to improving other outcomes such as recovery from an illness. However, the sad reality is that many people still have a poor experience of care.”

We can hopefully try to address that problem today. Cancer is no respecter of persons, but that does not mean that cancer treatment precludes the sufferer receiving the utmost respect and dignity through treatments that may be undignified in their essence. We have all lost a little dignity while in the doctor’s surgery and the manner of the doctor or nurse often determines how embarrassed we become. If we are treated gently and with care rather than being pushed through the process as quickly as possible to get the next patient seen, we may feel better as a result. That does not always happen and I can certainly appreciate the pressure that doctors and nurses are under to do the procedures, tick the red-tape boxes and bring down waiting lists. However, the fact that we are not dealing with lists but with people must never be far from our minds.

Again, I stress that I am not placing the blame on the providers of care, but something must be done to address the fact that, on average, only 56% of cancer patients in England said that doctors and nurses asked them by what name they wanted to be called, which was an issue highlighted by the hon. Member for Hertsmere. A little bit of consideration and allowing the patient to maintain their dignity does not take a whole lot of effort. It may seem trivial, but this is a serious point: a girl called Betty works in my office and were I to call her “Beatrice”, she would get upset and would tell me. Similarly, should I refer to the other lady in my office as Mrs Cotter when she is actually Mrs Armstrong-Cotter, she would immediately put me in my place. I use those examples because it is important that a caring bond is formed with cancer patients. A wee bit of time, consideration, humility and dignity can really make a difference. The same can be said on a greater scale when people are doing intimate things to patients while always reminding them that patients do not know them. That is a small thing that the Macmillan report highlighted that could make a patient feel that much more comfortable and indeed that much more safe.

The carers at the Macmillan reception also described some things that they thought should be happening in hospitals. They outlined the need for someone to be available to hospitals across all regions. The six people we met yesterday were all from different parts of the United Kingdom and all had different stories to tell. It seems that some trusts are responding well, but others are not. We need a universal response that encompasses all areas. The Macmillan representatives also suggested that someone should also be available to provide advice on benefits and on care and just to give support.

Another point that came out of yesterday’s discussion was about respite care. Some of the ladies we met were single carers—in other words, a wife looking after a husband, with no sons, daughters or other family members close at hand. We also need to consider the issue of respite care and how we can help such carers get a wee bit of time for themselves.

[Mark Durkan (Foyle) (SDLP)]

The hon. Gentleman said that Macmillan Cancer Support has suggested that help with understanding social security and welfare advice is important. Is he aware that, in the Altnagelvin area hospital in my constituency, Macmillan and the Western Health and Social Care Trust run the independent Macmillan/North West advice service to do exactly that? It basically navigates people through the benefits system and all the other support mechanisms. It does not expect people to be experts on such arrangements in the public administration system, but takes away an awful lot of the worry and provides pathways to care and support that they would not otherwise know was available.

[Jim Shannon]

The hon. Gentleman is absolutely right. I have such a service in my area. I am pleased that Macmillan and others provide such a level of care and support at times of great concern and worry in the Ulster hospital in Dundonald. I must say a great thank you to the volunteers—a great many of them are volunteers —who provide that service.

It is nice to see the shadow Minister, the hon. Member for Leicester West (Liz Kendall), in her place, because she and I had a discussion the other day about the report on care that is coming to the House for consideration. I hope that some of the points made by the ladies to whom we spoke will be part of our next debate on the draft Care and Support Bill, and I am sure that no one will be found wanting in responding to that.

In my opinion, the ethos of a hospital is reflected in how patients are treated. The Macmillan survey, which highlighted the priority of patient experience, has painted a picture of how each different hospital board views the importance of the patient care experience. It found that boards raised patient experience as an agenda item in policy meetings, but that only 5% of such items led to further action: boards noted the patient experience, but did not deem it important enough to follow up.

When I wore my other hat as a councillor, for some years I chaired the council’s audit and risk management committee and read the absolutely endless reports on matters prioritised as categories 1, 2 or 3: something in category 1 needed immediate attention, something in category 2 needed attention in a reasonable time, and something in category 3 needed attention just at some stage. It is safe to say that many of the category 3 priority cases remained the same and did not change from year to year, because time never permitted for making those changes, as something more urgent was always pressing. In other words, there were always category 1 and 2 priorities and, unfortunately, category 3 priorities sometimes sat on the shelf. My belief is that patient experience should not be a category 3 priority, but should be considered as a category 1 priority; it should not have to wait until everything else is fixed before it receives attention.

To conclude as I began, cancer is a wretched illness, whose deadly or grimy fingers reach out to impact on wide family circles, as well as entire communities. The experience of going through cancer has an impact on not only the individual, but the people around them. I believe that it is time to make cancer a priority, with a UK strategy for the Government here and those in the regions of Scotland, Northern Ireland and Wales. That is why I wholeheartedly support the hon. Member for Hertsmere and, in doing so, I again ask that any decision taken by the Secretary of State will look at having a UK strategy as well as additional funding. I thank the hon. Gentleman for bringing forward this debate.

--- Later in debate ---

[Mark Durkan (Foyle) (SDLP)]

It is a pleasure, Mr Owen, to meet under your chairmanship this morning. I congratulate the hon. Member for Hertsmere (Mr Clappison) on introducing this important debate. I want to raise a few points on the cancer experience that arise from my constituency.

As other Members have said, it is important that, in providing and modelling our services, we should directly draw on the experience, both in qualitative and quantitative terms, of patients and focus on outcomes. We also need to harness fully the insights that patients can give us into how services can be improved, better managed, better modelled and, more importantly, better accessed and understood.

In my constituency, there has been a major campaign for a localised radiotherapy unit. It was meant to happen as part of the overall improved cancer strategy in Northern Ireland, but for various reasons it got held up. The campaign was led by the Pink Ladies, a group who have gone through the cancer journey. They have all experienced breast cancer, but they are in no way exclusive about their cancer as opposed to other types of cancer experience.

On Monday morning, I attended a Pink Ladies event, which focused on the new partnerships in which the group was involved. It has spread its involvement to include not just Macmillan Cancer Support and Action Cancer but local community partnerships. It discussed providing new services at a neighbourhood level, including counselling services, listening-ear services and complementary therapy services. All are supported by professionals in the Western Health and Social Care Trust.

The issue is about making the services more accessible, comfortable and compatible with local users, who will rely very much on those who have been through, and are going through, the cancer experience, because such people are best placed to give support to others who are new to the journey.

On the point made by the hon. Member for East Londonderry (Mr Campbell) about male sufferers, an offshoot of the Pink Ladies has been formed comprising males who have been through, or are on, the cancer journey. They, purely in derivative terms, call themselves the Pink Panthers, but they are addressing exactly the issues that the hon. Gentleman mentioned. Part of the role of the groups is to help to provide advice to other patients, and their families and carers, about some of the issues that might arise and to anticipate some of the questions that might be going through patients’ heads—questions that they are just not able to articulate or are not yet ready to vocalise.

[Mr Robin Walker]

I am grateful to the hon. Gentleman for giving way. I apologise for having to leave the debate before the summing up.

I want to pick up on the hon. Gentleman’s point about how cancer patients can contribute to the campaigns. I have had a radiotherapy campaign in my own constituency in which Paul Crawford, a former head and neck cancer patient, has played an important role. Does the hon. Gentleman agree that cancer patients can play an important role by getting on the boards of local health trusts and health bodies and providing knowledge and experience, as indeed my constituent has?

[Mark Durkan]

I fully accept the hon. Gentleman’s point. The point that I was about to make myself exactly “rhymes” with his observation. It is that these people are in a position to offer advice to others diagnosed with cancer; to offer advocacy to politicians, service providers and managers as to how things can be improved; and to offer real insight in administrative terms, by helping to future-manage such services and review them against the sort of yardsticks that other hon. Members have said they must be measured against.

I said that the radiotherapy unit now to be based at Altnagelvin, which will be funded on a cross-border basis in Ireland, is really a roll-out of part of the wider cancer strategy in Northern Ireland. A number of years ago, I served as Minister of Finance in Northern Ireland in the first Executive following the Good Friday agreement, and then as Deputy First Minister. One of the most important things I did was when we negotiated what was called a reinvestment and reform package, with new borrowing powers coming from Westminster but also a funding package that was to complement the infrastructure fund that we as the Executive had developed.

The first item that I was able to insist on with Tony Blair and then with the right hon. Member for Kirkcaldy and Cowdenbeath (Mr Brown)—the two former Prime Ministers—was that funding should go to the regional cancer centre. It was meant to be a key part of the cancer strategy in Northern Ireland that was being led and advocated by Professor Paddy Johnston. We were able to fund that scheme, which was not coming forward and which did not seem to be breaking through in the Department of Health’s plans or budget submissions to me or to anybody else. We had been on the point of losing Paddy Johnston, who was going to go back to the United States, where he was going to be funded to do all sorts of things and use his skills.

However, as I say, we were able to create that cancer centre without going to a private finance initiative or anything else. Great work is being done there, not only for the patients it serves in Northern Ireland but because of the calibre of people it can attract and the clinical trials it can run, which are all part of improving the picture of cancer services throughout the United Kingdom.

As other hon. Members have said, staff at that centre and others are helping to work miracles every day with people who are suffering from cancer, but they are very conscious and very clear that their task is still to keep narrowing the gap between what the services ought to be and what they actually are, which is why we constantly need to drive on performance and outcomes in these areas.

Regarding the cancer experience, I am also very conscious of a constituent of mine who wrote a book a number of years ago, based on her experience, which basically says, “I have cancer but it doesn’t have me.” She is a lady called Kate Dooher and her book sets out very clearly her experience of a cancer journey and the implications for her family, colleagues and friends. Again, policy makers can get real insight from that about what the issues mean in real and practical terms.

I am a member of a number of the all-party groups on cancer, including all-party groups on different cancers, here in Parliament. Those groups can provide a platform for those with real insights, those who are providing care, those who are leading a lot of the professional fight against cancer and those who are driving the research platform. We should not underestimate the importance of either research or the linkage between good care networks and research. That is why Cancer Research UK is one of the most prominent advocates for more radiotherapy provision, because it believes that such provision not only makes services more accessible but that it is important in qualitative terms and in the research benefits that can come from improving services and treatment models in the future.

Going back to what the hon. Member for Hertsmere said, that is why, when we are talking about the patient experience, we very much have to listen to the patients themselves and base things not on what we think is the “nice fit, reasonable fit, just about cost-effective patient experience” but think in real and wholehearted terms about the patient experience.

Patients know how they have been able to improve their own experience for themselves, and they know how services whose staff might think they work do not really work for them, and how those services can be improved and modified. We need to gain their insight and emancipate their understanding as part of lighting the way forward for ourselves.

[Albert Owen (in the Chair)]

In calling Eric Ollerenshaw to speak, I remind Members that I will be calling the Front-Bench spokespersons at 10.40 am at the latest.

Tobacco Packaging

Mark Durkan Excerpts

Friday 12th July 2013 Commons Chamber

[Anna Soubry]

I think it would have been in 2004.

[Mark Durkan (Foyle) (SDLP)]

Like other Members, I regret that the Government have flinched on this. However, I welcome the fact that the Minister still clearly refutes the fallacy that standardised graphic packaging with markers would in any way aid smuggling or counterfeiters. Will the pause mode that the Government have now moved into still allow them to work with their Irish counterparts, perhaps moving on a synchronised basis in relation to these measures to make sure that this move happens throughout these islands?

[Anna Soubry]

I am very grateful for those comments. I know that the Republic’s Minister for Health is a firm advocate of standardised packaging. In fact, I think that if he could he would go even further and make tobacco illegal. I hope that he will not mind me saying that in public, but I believe it is his view. It is an absolute pleasure to work with him. We learn from each other. At the various European Union Health Ministers’ meetings we exchange ideas and experiences. That is why—I keep saying it, but it is absolutely right—we must wait and see the evidence as it emerges from Australia.