Hypothyroidism

Jim Shannon Excerpts

Tuesday 17th December 2013 Westminster Hall

[Mrs Caroline Spelman (Meriden) (Con)]

I am very grateful to have the opportunity to raise this subject in Parliament. It was first brought to my attention by a constituent; I will obviously keep her name confidential, but she is content for me to discuss her experiences, which are not unusual. Hypothyroidism is not a small or niche illness; it is estimated that up to 3.5 million people in the UK may have a thyroid problem. It disproportionately affects women compared with men, by a power of 10, and the effects of the disease can be really debilitating, with the many symptoms including tiredness, aches, weight change, coldness, memory loss and depression. Even more seriously, the disease can impact on the functioning of the heart. The problem is that many of these symptoms are not unique indicators, and therefore they may be hard to pinpoint or describe.

When someone is suspected of having an underactive thyroid, or hypothyroidism as it is known, their GP will usually do a blood test to check the levels of the thyroid-stimulating hormone, or TSH. This test is called the TSH or FT4 test. In the UK, an abnormal test result will only come back for someone who is above the “over” levels of the TSH bell curve for the population. That means that some people may have sub-clinical levels of hypothyroidism but they are not flagged up for treatment. Once again, there is a disparity between the number of men and women with sub-clinical levels of hypothyroidism; three times as many women as men suffer from those sub-clinical levels. The opposite can also be true. Doctors have to consider how to treat patients with abnormal results who otherwise show no clinical signs of hypothyroidism. Therefore, it is accepted that GPs might face many different problems when trying to treat a patient with hypothyroidism.

However, my constituents know exactly how difficult and frustrating it can be to live without effective treatment of their condition. I expect that all of us know someone who has suffered from hypothyroidism, and I think that we are all aware of the impact it can have on someone’s quality of life.

[Jim Shannon (Strangford) (DUP)]

In her introduction, the right hon. Lady mentioned that about one in 50 women and about one in 1,000 men develop the disease in their lifetime. Does she agree that if someone has a family history of the disease, perhaps at a certain stage of life there should be a check carried out on them to see if they have it?

[Mrs Spelman]

I thank the hon. Gentleman for his intervention, because that is an excellent suggestion; it is what I would describe as a no-brainer. If someone has a family history of the disease, surely that should be a very strong indication for the GP to be proactive in monitoring the possibility of it appearing in subsequent generations within the family. The Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison), is responding to the debate and perhaps she could respond to that point.

The constituent who first brought this issue to my attention a couple of years ago is, in fact, director of the charity Thyroid UK, which has been contacted by 19,000 thyroid sufferers. There was recently a petition with more than 5,000 signatures from sufferers who wish to see this matter debated and this disease being better dealt with. Therefore, I want to take this opportunity to raise awareness of this serious disease, the methods of diagnosing it and the ways of treating it. I also want to question the broad range of GP responses to diagnosis. More training is required to ensure that GPs respond consistently and are ready to test a patient fully for thyroid problems, so that a quick and full diagnosis can be made. That should include checking someone who has a family history of the disease, which was the excellent point made earlier.

If hypothyroidism is left undiagnosed, it can affect heart health, as I said before. It can also be a risk in pregnancy for a younger woman. If they are undiagnosed, sufferers have to live with unabated symptoms. Wrongly diagnosed patients spend time and money on visiting different specialists, as they try to find an answer to the symptoms they know they have. That is obviously a waste of both the patient’s time and the doctor’s time, as well as a waste of precious resources within the NHS. Effective and quick diagnosis is needed. There are many stories of misdiagnosis, for example where depression or fibromyalgia is diagnosed, and therefore the patient is given the wrong prescription, which can include anti-depressants and other hormone-altering drugs.

There is also an argument that in the long term correct diagnosis and treatment will cost the NHS less. In addition, a healthy, active working patient will cost the state less in benefits. My constituent had to give up work during a period of five years, and she very much regrets that her symptoms necessitated her having to do that. The disease obviously has a huge impact on someone’s life and on their overall earning capacity within their working lifetime.

It is imperative that all GPs are trained in identifying this condition, and that they are reminded to consider that certain symptoms might indicate hypothyroidism even if someone’s TSH test comes back as normal. For example, could it be that the patient is still affected by sub-clinical hypothyroidism? Should the range for those considered “normal” be reduced to bring in these borderline and sub-clinical patients? In the UK, the test considers anything above 10 ml of TSH in serum in the blood as abnormal. However, given that 10 ml is an average figure, there will be individuals who may be hypothyroid with TSH levels below the 10 ml figure. So there may be an argument for reviewing the 10 ml level. At the very least, there should be assurances that the tests are standardised, with reproducible performance in different laboratories. I have discovered that in Germany the threshold is, in fact, 3 ml, but I have to say that it is measured in a slightly different way from the way that we measure it here. However, one question that I put to the Minister is this: why does there seem to be a more sensitive threshold in another well-developed country such as Germany, which might allow a doctor to be alerted sooner than might be the case here?

When a normal result is shown but symptoms are present, why is it not regular practice to carry out a T3 test, in case the problem is caused by a malfunction of the pituitary gland rather than a malfunction of the thyroid gland, or a lack of conversion from T4 to T3? A consistent and sympathetic approach to hypothyroid diagnosis by GPs and specialists is necessary, putting the needs, experience and concerns of patients first.

There is also an inconsistency in the prescription medicines that are offered. Guidelines from the National Institute for Health and Care Excellence clearly state that levothyroxine should be prescribed in the case of overt hypothyroidism, and that might be why the 10 ml level is required by the test. NICE also states that T3 should not be used in conjunction with levothyroxine.

First, it should be made clear that the test to see if the disease is present should not be set at a level solely for identifying the level needed for prescription and a curative drug. The threshold perhaps needs to be different to ensure that there is early and correct diagnosis. People need to know with certainty what illness they might have, in order to give them at least the ease of mind that they have the answers to their health questions.

Recently, the Medicines and Healthcare products Regulatory Agency called into question levothyroxine tablets made by a company called Teva. The agency recognised that levothyroxine is now far more controlled in its production and sale here in the UK. Levothyroxine is licensed in the UK, and I am not suggesting that those problems have not been dealt with; they have been. However, in the minds of patients, doubts were of course raised at the time.

Levothyroxine is not a drug as such, but is a naturally occurring thyroid hormone made to replace the missing hormone in someone who suffers from hypothyroidism. NHS Choices is clear that the drug does not usually have any side effects, unless too much of it is taken. Levothyroxine sodium can also be used.

A naturally desiccated thyroid treatment, or NDT, is a medication made from dried porcine thyroid glands. Before artificial thyroxine existed, this product tended to be used. I do not know at what date it ceased to be licensed, but presumably it was licensed in the 1960s, when it was the only product available. It is not now licensed in the UK, as the hormone levels in the naturally desiccated thyroid treatment can be inconsistent and both T4 and T3 hormones are present. However, my constituent is anxious that sufferers such as herself, who do not respond well to the artificial thyroxine product, should be able to be prescribed NDT treatment as an alternative.

The Royal College of Physicians advises against the use of the hormones T3 and T4 together, as that is inconsistent with normal physiology and high risks of long-term harm may outweigh the considered short-term benefits to the patient. However, NDT is prescribable by GPs, on their own direct responsibility, in respect of their patient’s health. Therefore they are rightly under no obligation to prescribe it. The Minister might like to reflect on the fact that, within the NHS, such variation can be a cause of concern among patients, some of whom do not have access to a GP who will prescribe it for them.

This inconsistent approach by doctors has caused distress among patients, some of whom have received the drug from GPs although others have not. Patients do, of course, compare notes. This inconsistency needs to be addressed. Combination and NDT drugs probably do not yet meet the clinical requirements to be licensed in the UK. However, it is surely time that a T3 replacement medicine or a combination medicine that meets the requirements is researched and produced. There is official recognition of some patients’ preference for such medicines, although it was understood, when studying patients who were unaware that they were taking a combination drug, that there is no clinical benefit. There is guidance to GPs on explaining the possible benefits and dangers in full to their patients.

There may be sufficient justification for a reappraisal of the treatment of hypothyroidism in the UK by such bodies as NICE and the Society for Endocrinology. Such a professional reappraisal would also benefit from the involvement of patients. The results of any reappraisal should be communicated clearly to patients, health care professionals and prescribers, and we parliamentarians, who take up individual cases.

I pay tribute to the work of the charity, Thyroid UK, which provides important support to the large number of sufferers, and families, affected by this disease.

Rare Diseases

Jim Shannon Excerpts

Tuesday 17th December 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to be called to speak in this debate, Mr Bayley, which I have sought for some time. It all goes back to a meeting that I had with a number of people from Northern Ireland back in June. They outlined their concerns about the funding and resources for rare diseases, and about strategy.

In this debate, we have an opportunity to look back. Governments in Westminster and the regions, and particularly in Northern Ireland, which I represent, are responding to a UK strategy. The timing of this debate is more appropriate than it would have been had we had it in September, or July last year, because we now have the chance to discuss where we go with the strategy, and how we tie it in throughout the United Kingdom. I appreciate the attendance of Members to discuss rare diseases. It is a pleasure to have so many in the Chamber—to make a contribution, I hope.

Some of the stories that I have heard about rare diseases would break your heart, Mr Bayley. That is where I am coming from, because my cases are those of constituents who came to me with their problems and asked me to portray or reflect on them in the House of Commons and, we hope, find a way forward. It is abundantly clear to me and to everyone in the Chamber that we need to be proactive, making changes that will give the people affected in our nation a better quality of life.

Let me set the scene with a few facts. One in 17 people in the United Kingdom will be affected by a rare disease at some point in their life, which equates to 3.5 million people; 75% of rare diseases affect children; and 30% of patients with rare diseases will die before their fifth birthday. The Teenage Cancer Trust has given me some facts. There are more than 6,000 recognised rare conditions, 80% of which have a genetic cause.

In June 2009, the UK adopted the Council of the European Union’s “Recommendation on an action in the field of rare diseases”. It recommends that member states

“Establish and implement plans or strategies for rare diseases”,

which should be adopted

“as soon as possible, preferably by the end of 2013 at the latest”.

We will not make that deadline, but I hope that we will make the deadline of February 2014, when all the regions will come together under the captaincy of the NHS and the Minister in attendance, who will push things forward.

In November 2013, a UK strategy for rare diseases was issued by Ministers from the four UK Health Departments, including our Northern Ireland Minister, Edwin Poots. The recommendation contains 51 commitments, which all four countries of the UK are committed to delivering by 2020. The commitments are UK-wide and will be implemented in country-specific plans for England, Scotland, Wales and Northern Ireland. Time prevents me from going into all 51 commitments, but I have been contacted by many groups, and I wish to raise at least some of the issues that they highlighted for me.

[Graham Stringer (Blackley and Broughton) (Lab)]

Before the hon. Gentleman gets into a long list, does he agree that the changes in the structure of the NHS have made achieving a strategy more difficult, because it is often not clear where the responsibility for dealing with rare diseases lies between the commissioning groups and NHS England?

[Jim Shannon]

The hon. Gentleman has outlined an issue that is of concern to us, and I hope that the Minister will respond to it in this debate. With great respect to the Minister, he always tries hard to respond to the issues that we ask him about; I do not mean to put up too high a pedestal, but we have high expectations of his response.

The Teenage Cancer Trust contacted me, and its correspondence included some of the figures I gave earlier, which indicate how important the subject is. The trust told me that seven young people per day between the ages of 13 and 24 are diagnosed with cancer. The trust has 27 cancer units operating throughout the United Kingdom and Ireland. There are around 1,200 new cases of cancer among teenagers and young adults in the UK every year, which is a significant number for a rare disease, as defined by the specialised services. Cancer, however, remains the most common cause of non-accidental death in young people, and the five-year survival rates are lower among teenagers for some cancer types than among children. I repeat that, according to the trust, 30% of rare-disease patients will die before their fifth birthday. It is a cruel fact that some children will not enjoy life beyond the age of five.

The trust has proposed recommendations. It believes that it is critical that the service model continues to be secure in the NHS, as part of a standard cancer care; in other words, diagnosis and care must be delivered at an early stage. It welcomed the setting up of the teenage and young adult clinical reference group in NHS England, and called on NHS England to continue to work with the group to focus development on the services.

I refer to NHS England, even though I am an MP for Northern Ireland and health is a devolved matter, because there has to be a driver on rare diseases, and NHS England is the driver to take all the regions forward together. When I refer to NHS England, I am referring to something to which we can all contribute, including those in our part of Northern Ireland.

The Teenage Cancer Trust also referred to the fact that there are different cancer biologies, treatment protocols and responses to treatment. All the issues need to be brought together, which underlines what the hon. Member for Blackley and Broughton (Graham Stringer) said. There has to be better co-ordination. The trust also recommended more trials relating to teenagers and young adults with cancer, and challenging the arbitrary age criteria that are often set for trials. It also recommended ensuring a mechanism for action on new drugs, so that they can be tested by different groups. In other words, it wants early diagnosis, a focus on the issue and, by releasing financial and regulatory burdens safely, to encourage more research development for teenagers and young adults.

Another trust recommendation was for a system that alerted GPs when they had seen a patient three times with unresolved cancer symptoms. That would help them to identify and manage those cases. That is to say, with cancer, when someone has had three strikes, it is time for the case to be looked at intensely, so that we can ascertain exactly what is wrong. The trust has put forward those ideas, which are important to what we are trying to do.

There are more than 60 different types of muscular dystrophy and related neuromuscular conditions. Approximately 1,000 children and adults for every 1 million of the UK population are affected by muscle-wasting neuromuscular diseases. It is therefore estimated that some 70,000 people are affected by a neuromuscular condition in the UK. A constituent I met in June, Dr Amy Jayne McKnight, chair of the Muscular Dystrophy Campaign in Northern Ireland, is a director of the Northern Ireland Rare Disease Partnership; she sent me the following quotation through the Muscular Dystrophy Campaign, with which I have contact:

“There is an urgent need to establish multidisciplinary support for people with neuromuscular conditions in Northern Ireland. The lack of a register of affected individuals makes clinical care particularly challenging due to a lack of planned services. My father, who has spinal muscular atrophy, experienced very sporadic clinical support and was only offered respiratory care after he ended up in intensive care—putting his health at risk. Individuals in Northern Ireland deserve the same care and support as those living in England; international standards of care guidelines exist for several neuromuscular disorders including NICE accredited guidelines for Duchenne and the forthcoming NICE guidelines for uncommon neuromuscular disorders. We need to build on existing expertise in Belfast, alongside support from Centres of Excellence in the rest of the UK, to enable an effective network of specialist services to be developed in Northern Ireland.”

That is a lengthy comment, but it puts in perspective what the partnership is seeking, and what the House should be doing in the strategy that we develop.

I have raised this issue with the Minister who has responsibility for health in Northern Ireland, Edwin Poots, but if all four UK countries are to fulfil their part of the deal, the United Kingdom Government must soon provide additional, ring-fenced funding to each region. Only then will people receive the care that they need. It is all very well to have a strategy, but we must have resources and finance in place to make it happen. The four regions need to work together to make it happen; that is what we should be trying to do.

[Graham Stringer]

The hon. Gentleman has raised some profound points about networks and information. I am not so familiar with the situation in Northern Ireland, but clinical reference groups are vital. He has talked about Duchenne muscular dystrophy. In England, patients suffering from neuromuscular diseases are often directed to a clinical reference group for generic neurological diseases, which is obviously inappropriate. Is that his experience in Northern Ireland, and does he believe that we should do something about the situation in England?

[Jim Shannon]

I cannot speak about other places, but I do not believe that that has been the case in Northern Ireland—I am not aware of it. In my area, there are young people with Duchenne muscular dystrophy, and I met some young people with Duchenne at an event held every year in the Methodist centre across the way. I have been to the past couple of events, and there has been only one person from Northern Ireland there. With my background information, I would say that what the hon. Gentleman describes does not happen in Northern Ireland, but he says that it does in England, and that needs to be addressed. I hope that the Minister will take that point on board when responding.

The United Kingdom Primary Immunodeficiency Network, or UKPIN, is a professional organisation for all doctors, nurses and scientists working in this field, and it covers six rare diseases. UKPIN—I need to be careful how I say that, because UKIP has no role in this matter whatever—has stated that its aims are the registration and accreditation of specialist immunology centres for primary immunodeficiency, or PID; the development of a national patient registry, to which the Government have given a commitment in the rare diseases strategy; and the development and dissemination of guidelines and standards for best clinical practice. The UK PID registry has been supported by the Healthcare Quality Improvement Partnership, and has engaged the participation of 95% of UK centres since its establishment in 2008. To date, nearly 3,000 patients have been registered, making it the second largest patient registry in Europe, after the long-established French registry.

The figures for Northern Ireland suggest that PID is as common as cystic fibrosis. A first report on the matter is at the presses, and we will soon have the opportunity to read it. Perhaps the most pressing point that has been raised is that there is a need for meaningful national and international collaboration on both research and development of clinical practice to ensure maximum benefit for patients. Let us not disregard international collaboration: if something good is being done in France or Germany, it would be good to exchange expertise, so that we can all improve and move forward. Groups such as UKPIN can take the lead in some of these matters. The UK has already led in the development of novel treatments—for example, with gene therapy—and in implementing novel technologies such as next-generation sequencing. It is crucial that there is ongoing investment to maintain that research.

Rare Disease UK has welcomed the promise of greater co-ordination of care for people with rare diseases. As we hear all too often, patients and families have nobody to co-ordinate the multiple elements of care and treatment that their condition necessitates. How often have we heard that, when it comes to health care? It is not just about care for rare diseases. Members here today all regularly contribute to our discussions on health issues in the House, and all too often we hear of people who do not know where to go or who to speak to, and are not quite sure who they need to be in touch with to help them. That is a key issue; if we could address that, it would be helpful.

[Mr Nigel Dodds (Belfast North) (DUP)]

I am grateful to my hon. Friend for raising this important issue. He touched on support and services for families, particularly at the early stages of diagnosis of rare diseases. That is especially important when the case involves a child, as many do; we heard that earlier. Does he agree that that is one of the most critical matters that needs to be addressed in any UK strategy, and that it is particularly important in Northern Ireland? He and I have shared some experiences of the deficiencies in that regard.

--- Later in debate ---

[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.

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[Charles Hendry]

I agree with the hon. Gentleman. A constituent has written to me just this week about meningitis and a drug that has gone through the trials process. It has been approved, essentially, but is only being made available to people who can pay for it at the moment. It seems to me that when treatments could be made available, expediting the process of approval and then ensuring that they are generally available as soon as possible, to as many people as possible, should be an objective of its own. I absolutely agree with what he said in that respect.

[Jim Shannon]

As I said in my introduction, the Teenage Cancer Trust indicated that that was one of its recommendations and it would like to see that happening. Perhaps the Minister can respond to that recommendation from the Teenage Cancer Trust. When it comes to the trial, effectiveness and availability of the drugs, we have to look outside the box. That is what we are trying to do, and I think that the hon. Gentleman is also saying that.

[Charles Hendry]

That is exactly what I am saying. The other thing that we owe tremendous credit to the Teenager Cancer Trust for is highlighting the way in which teenagers are dealt with in hospitals. The issue is that sometimes they are put in children’s wards, which is clearly not suitable for somebody who is in their late teens, and at other times, they are put in wards with people who were in their 80s and 90s, who are dying or are ill with other conditions. Someone who is a teenager is at a particularly vulnerable time of transition in their life, and it is incredibly important that their needs are dealt with in a specialist way and that they are surrounded by as many people of their own age group as possible. I think that is an important part of the treatment and recovery process.

I encourage the Government to continue what they are doing to try and address the issues. The strategy that is being put in place is of great importance, but more could be done to achieve a bigger overall gain from so many different fragmented, but immensely worthwhile contributions.

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[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.

Care Bill [Lords]

Jim Shannon Excerpts

Monday 16th December 2013 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to make a contribution in this debate. I thank hon. Members who have made what I would call very passionate, compassionate, knowledgeable, personal and spirited speeches.

The Bill will affect every person in the UK in some way or another. As such, it is incumbent on us to get it right. I have been contacted by a great many bodies and constituents and I have also been in contact with the Health Minister in Northern Ireland, as it is imperative for us to take into account what has been put to us by those on the front line who are providing the services catered for in the Bill.

The vast majority of the Bill’s provisions will apply to England and Wales only, but some legislate on Northern Ireland devolved matters. As the House will know, health is a devolved matter in Northern Ireland, but the Bill deals with some specific issues. One of those provisions is the abolition of the Health Research Authority as a special health authority, and its establishment as a non-departmental public body.

Another such provision relates to the enabling powers for cross-Administration care home placements. The Bill will introduce a four-way reciprocal arrangement, which will enable clients to be placed in care homes across all four UK jurisdictions. That was referred to by the hon. Member for Arfon (Hywel Williams) in relation to Wales. The Bill document is very clear about the arrangement between the four regions—it is good news—that will enable that to happen.

Other such provisions are the associated cross-Administration social care provider failure protections, which will extend across the whole of the United Kingdom. The Bill will introduce continuity of care protections for clients placed across the four jurisdictions in circumstances in which providers fail due to a business failure. It is important to have cross-communication between all four regions within the United Kingdom of Great Britain and Northern Ireland to ensure that there are protections for all.

As I mentioned, social care is a devolved matter, so the Executive and my Assembly colleagues have agreed two legislative consent motions. As Members will see from the Order Paper, the National Assembly for Wales has also passed two legislative consent resolutions in respect of the Bill. The principle has therefore been agreed, but the devil is in the detail, which comes in the Bill.

The Bill also covers changes to how care and support is funded, with planned reforms including the introduction of a cap on contributions to care costs and changes to the means test on capital limits. As social care is a devolved matter, those changes will apply in England only, but I always like to inform the House of what is happening in Northern Ireland. It will interest Members to know that the Department of Health, Social Services and Public Safety is taking forward a three-stage process to reform adult care and support. The first stage was a six-month consultation on the discussion document “Who Cares—The Future of Adult Care and Support in Northern Ireland”. The consultation concluded on 15 March and a report analysing the responses and summarising the comments that had been made was published on 14 August.

The Department is now taking forward the second stage, which will involve the development of proposals for reform and will be subject to a full public consultation in due course. The proposals will include changes to both the type of support that will be available and how services are funded, including how people pay for residential care, which is an important issue in Northern Ireland and the whole United Kingdom.

The third stage will be the development of a final strategic document setting out the agreed future direction on the funding of adult care and support, along with the reforms required. It is likely that legislative change will be required thereafter, so the whole process will take some time to complete. However, I believe it is key to ensuring that Northern Ireland has a care and support system that is sustainable and fit for purpose for many years to come.

I ask the Minister what discussions have taken place with the devolved regions to ensure that we have a system that provides the same level of care across the board, not simply a postcode lottery. Perhaps he will clarify how he intends to ensure that the NHS will continue to be a national health service, not simply a regional health service, and that we have similar levels of care across the whole UK.

I wish to highlight an issue that Marie Curie Cancer Care has brought to my attention. At present, terminally ill people and their families can wait weeks to get social care while local authorities test their means and their level of need. That could be rectified through a duty on local authorities to process applications for local authority-funded care swiftly. We need to add a bit of zip and eagerness to the process to ensure that care can be delivered, particularly for those with cancer. Last week a meeting took place in the Methodist hall across the way, at which a shadow Minister spoke. The Conservative party also had a representative there. Everyone outlined the need for help for those with cancer, and that is one issue that really needs to be addressed. There were people from across England and Wales in that room who had specific needs because of cancer.

The situation for terminally ill people and their families is difficult, and NHS continuing health care is supposed to address it. However, local variations and the way in which CHC funding is allocated mean that few terminally ill people gain access to care through CHC, even though it is available. In this age, how can that be? In Northern Ireland, the Assembly has put in place a commissioner for older people and tasked her specifically with looking after the concerns and needs of the elderly population and highlighting their issues. I took the opportunity to bring the commissioner down to a public meeting in my constituency to give people the chance to express their concerns about residential homes, their money, their benefits and their social and health care.

Social care is vital to terminally ill people and their families. A study by the Nuffield Trust showed that terminally ill people who had access to local authority-funded social care were far less likely to use hospital care. Currently, more than 50% of people in the UK die in hospital, despite only 2% saying that that would be their preference. The National Audit Office estimated that 40% of people who die in hospital have no clinical need to be there, and that is thought to be a conservative estimate. If those people were moved to a community setting, supported by social care, they would receive the care they wanted, and it would free up hospital resources for people who need curative interventions. Will the Minister tell the House what progress has been made on securing fast-track access to social care for terminally ill people? Those are vital issues for the people we represent.

Although the new amendments seek to address such issues, I have been informed that concerns remain because the clause does not require local authorities to provide fast-track care for terminally ill people. If local authorities have the option to fast-track social care for terminally ill people and their families, but no incentives to do so, that could lead to a high degree of variation across the country in the availability of social care. Again, that goes back to my earlier point about whether we have a national health service or a regional health service. It is important that the service is the same across the United Kingdom, so that what people get in Scotland is the same as they get in Wales, Northern Ireland or England. I believe we should have such services everywhere, and they should not be different for anybody, no matter what their strata in life.

One major issue is the cap on care provision. Although I welcome the steps taken to alleviate financial pressure on individuals, they do not go far enough. I am joined in that belief not only by most Members of this House, but by the Royal College of Nursing, which stated,

“at £75,000 we are concerned about how many people this will positively affect. The RCN believes that too many may be left unaffected and still face agonising decisions over how to pay their care bills.”

One issue that has come to my office on a regular basis over the years is that of families and those of a certain age who are considering how they will pay for their health care over the next period. Many Members have made passionate speeches today, and it was a pleasure to have been in the House to hear them. They were also very personal speeches, and people spoke of their own relatives who have had to deal with this issue. The RCN continued:

“The RCN calls upon the Government to reflect on its decision around the figure set as the cap and to revise it to one closer to that advocated by the Dilnot Commission of between £25,000 and £50,000.”

I support that as, I believe, do other hon. Members.

Time has beaten me and I am unable to speak about the other issues that have been raised. If the Minister hears only one point from my contribution, let me be clear that we need a national health service rather than a regional health service, with the same level of care and service. That service must be affordable without people having to sell all they own to pay for their health and well-being.

Podiatry Services

Jim Shannon Excerpts

Wednesday 4th December 2013 Westminster Hall

[Andy Sawford (Corby) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship, Mr Robertson. I am pleased to have secured the opportunity to speak about podiatry services. I hope the Minister will forgive me if I speak a little briskly, but there are a number of issues that I want to cover. I am delighted that other hon. Members also wish to contribute.

In my constituency, which covers Corby and east Northamptonshire, podiatry services are delivered through Northamptonshire Healthcare NHS Foundation Trust. In May this year, the Nene clinical commissioning group and the Corby CCG initiated a public consultation on their proposal to make changes to the delivery of podiatry services, based on categorising the needs of patients as high, medium or low risk. I received letters from constituents and had constituents attend my surgery. For MPs, multiple contacts from constituents is sometimes a warning sign that there might be a problem. My constituents were concerned about the consultation, first, because they regarded it as ineffective, as it failed to communicate or engage with the users of podiatry services to any reasonable degree, and secondly because they thought it token. We know that the public are at times sceptical about consultation exercises, and with reason. It does not help when they see them as being more about selling a solution—a predetermined decision—than about genuinely engaging people in finding the best way forward.

We all recognise that services need to change for all sorts of reasons, not least due to our ageing population and the financial challenges that our local health care providers face. We MPs want to engage in consultations in which the public are genuinely involved and in which we feel that there has been rounded discussion about how best to work together, across the public sector and the different parts of the health system, to find the best way forward.

[Jim Shannon (Strangford) (DUP)]

Podiatry is important for everyone, and those who need treatment in particular. The optician will diagnose things that other people might not see; the podiatrist, too, can diagnose things that are wrong with someone’s body—for example, he can spot the onset of diabetes and other health issues, including in elderly people who do not know they have them. Does the hon. Gentleman agree that podiatry is vital in checking for ailments that someone does not know they have?

[Andy Sawford]

The hon. Gentleman is absolutely right, and I shall turn to that point in describing the consequences of some of the changes in my area. There is a pattern across the country. I am sure that he, too, will be concerned to ensure that services are available in his area.

On 30 July this year, the clinical commissioning groups announced that their governing bodies would approve the cessation of “low risk” podiatry. They have been unable to explain to me what the standard assessment process will be for categorising patients in that way. They qualified the announcement by stating that the decision would not apply to children or vulnerable groups, which was a response to the strong feedback that the public and I, and perhaps other hon. Members, gave. I challenged the Nene CCG on the definition of “vulnerable groups”, and it told me that the term refers to

“The frail elderly and people who are likely to neglect foot-care for financial reasons”.

That is good to hear, but it is not clear who will make that assessment, and on what basis. We must ensure that the most vulnerable can access care.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

It is a pleasure to serve under your chairmanship, Mr Robertson. I congratulate the hon. Member for Corby (Andy Sawford) on securing this important debate. He is right to say that podiatry might not be at the more glamorous end of the health service, but of course it is important. I had a very good meeting with Diabetes UK within the first few weeks of taking on my new job as the Public Health Minister. Many of the points that he has raised were stressed, particularly the link with diabetes and with unnecessary and avoidable amputations. Being unglamorous does not mean that it is not important. I think we can agree about that.

The Government know that receiving personal care that is responsive to people’s needs is absolutely essential, and the service that podiatrists provide to local communities is vital in helping people to maintain their mobility, independence and well-being. We know that many other good things flow from maintaining mobility and independence.

Healthy feet allow people to be active and to exercise, which, as we know, has numerous benefits: maintaining better weight, improving muscle and bone strength, and keeping people’s emotional and mental health in a good place. There has been a lot of discussion about the isolation and loneliness of some older people, and the more active they can be, the less likely it is that they will be isolated and lonely.

With the elderly being the fastest-growing age group in Britain, increasing pressure is being put on health care, which will be reflected in the demand for podiatry care. Ensuring people have got healthy feet, preventing falls in older people, and proper and regular foot care can alert us to the early signs of other, more serious health issues, which is obviously important in people with diabetes.

Diabetes, arthritis and blood circulation problems are of particular concern, and they are big priorities for all parts of the NHS. Sometimes people are concerned that individual services or conditions are not always specifically named, but NHS England has very clear direction, through the NHS mandate, about looking after long-term conditions and older people, and podiatry is a key component of that mandate.

[Jim Shannon]

Will the Minister ensure that podiatry home visits continue for people—probably those in rural locations—who are unable to access the surgeries?

[Jane Ellison]

Access is an important factor. The hon. Gentleman is right to highlight the fact that improving and maintaining access is important.

Sometimes education is about making sure that people understand when to seek help and what the warning signs are. Podiatry is an important component of early alert work, as well as an important provision for older people and for people with long-term conditions. In situations in which services need to be changed, the NHS commitment is to make sure decisions are made in a clear and transparent way, so that patients and the public can understand how services are planned and delivered.

Through the mandate, NHS England is responsible for services and for working with local clinical commissioning groups to ensure that their services are based on the needs of the local population within the resources available—the hon. Member for Corby acknowledged the constraints—and there has to be evidenced-based best practice.

An important part of the reforms was to establish CCGs at the level at which commissioning decisions are informed. They are closer to their local communities and can respond to local needs, but they have access to good advice through NHS England, clinical senates and local professional networks. That commissioning process also takes into account the local authority’s views, with regard to the joint strategic needs assessment and, of course, the local health and well-being strategy, so these decisions do not exist in a vacuum: they are taken within a framework, all of which is geared towards local services responding to the needs of local people.

Of course, a big part of that—it is something I am always keen to stress—is the engagement with local democratically elected representatives. I am really pleased that the hon. Gentleman is so engaged with this issue. Whenever I have the chance to talk to people from any part of the health service in the course of my work, I stress the need to keep local councillors and local MPs closely informed and to work with them in making these key decisions, because I know that we are often the early warning signal when people have concerns. Like the hon. Gentleman, I have had people come to my surgery about these issues and that has been an early alert about when people might have concerns. It also allows us to respond to concerns that perhaps arise sometimes when a misunderstanding of a decision is causing undue alarm.

Dermatology Funding

Jim Shannon Excerpts

Wednesday 4th December 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I apologise for ducking in and out of the Chamber. I am trying to make arrangements to meet a couple of people, so I apologise to the hon. Member for Gainsborough (Sir Edward Leigh) and to other Members for not being here for the entirety of his speech.

I congratulate the hon. Gentleman on bringing the matter to the House for consideration. He expounded the importance of this matter to him personally. For others in and outside the Chamber, it is something that perhaps members of their families have and that they can relate to.

As the hon. Gentleman outlined, there is a need for sufficient funding. When we look at what this involves, we can quickly appreciate the importance of the subject. He referred to the 75% increase in skin cancer in the past year. As an elected representative with a particular interest in health issues—I am my party’s health spokesperson in this place—I have a close relationship with my counterpart and colleague in Northern Ireland, the Health Minister, Edwin Poots. He furnished me with figures that indicate that the increase in Northern Ireland is equal to the figures given earlier, if not just above in many cases. I find that as worrying as the hon. Gentleman did.

I have read the report and it is helpful to read some of the background information. A team from East Anglia recorded data. Some people will say that there are lies, damned lies and statistics. Perhaps that is not entirely fair, as they can provide helpful information. The team referred to an 11-year study that showed that basal cell carcinoma increased by 81%. They extrapolated their figures across the whole of the United Kingdom to come up with figures. Whether they are entirely accurate, I do not know, but I think that they do give a feel for the subject and an indication of the number of people who may be affected. The report said that

“around 200,000 patients had 247,000 cases of BCC treated surgically.”

That is just one type of skin cancer, which gives an idea of the magnitude of the problem.

I want briefly to give some details of what we are doing in Northern Ireland. Again, I do that from a positive frame of mind, because I believe that, if we are doing something, that can be helpful. The hon. Member for Mole Valley (Sir Paul Beresford) may not have known about the programme that is taking place in the area of the right hon. Member for Chesham and Amersham (Mrs Gillan), but if something good is happening, we should exchange those ideas to help each other. That is something that we initiated in relation to dermatology overall as well as skin cancer. In the past year, the Health and Social Care Board invested some £1 million recurrently and another £3 million non-recurrently in dermatology services, including psoriasis drugs. That is for a population in Northern Ireland, as the Minister will know, of 1.8 million, which puts the amount invested into some perspective.

My second son, like the hon. Member for Gainsborough, was born with what I would refer to as scaly skin, or eczema. I have to say that I did not wash him very often, but my wife would always wash him morning and evening up to about the age of six or seven, as well as creaming him twice a day. What was interesting was that eventually the eczema left him, but, as that left him, something else took its place: asthma. That was an unusual reaction, but as the eczema left, the asthma increased, so there is obviously, as the doctor at the time made us aware, a medical connection between the two conditions. The interaction was close and clear.

The Northern Ireland Department of Health has an additional £240,000 of recurrent funding confirmed for dermatology services in the Northern Health and Social Care Trust. That is only one of four trusts in Northern Ireland. The board is working with the others to finalise their recurrent funding requirements, which are estimated to be about £500,000. I mention that strategy of working together with the trusts because trusts and councils on the mainland could come together to do something similar to spread the cost.

The debate is about the funding of dermatology in the NHS. We are in difficult times, and everybody acknowledges that finance is not always available in the way it was in the past. We have to make better use of the money we have, and we have to try to do that in a way that delivers services and address all the issues. We have tried to do that in Northern Ireland, and I know the House and the Minister are also trying to make better use of the money that is available.

The Health and Social Care Board has also been working with local GPs to redesign the traditional patient pathway for dermatology assessments. Again, early diagnosis is important, and the figures in the background information for the debate indicate that. Some of the survivors of skin cancer I have spoken to would say the same. Some of those cancers are usually completely curable. One cancer, if caught in the early stages, might need surgery, chemotherapy and/or radiotherapy, but there is hope when the dreaded “big C”, as many people call it, comes upon us.

Initiatives have also included the funding of a photo-triage pilot. It will, I hope, help the Minister to hear what we have been doing. The pilot scheme will deliver its results in March next year, and it would be helpful if they were made available so the Minister can see what has happened. As part of the pilot, GP practices can refer patients with suspected malignant melanoma or—forgive my Northern Ireland accent—squamous cell carcinoma to a dedicated photographic clinic, which is used to triage the patient, thus reducing unnecessary out-patient attendances. That pilot can shorten the process and focus resources on the issue in hand. If the pilot is successful, as I hope it will be, the figures it produces will be helpful.

I want quickly to comment on sunbeds. Some Members have spoken about them, and others will speak about them as well, including perhaps the hon. Member for Romsey and Southampton North (Caroline Nokes).

[Caroline Nokes (Romsey and Southampton North) (Con)]

indicated dissent.

[Jim Shannon]

Maybe not—I thought that might be one of the issues she would touch on.

In my previous job as a Northern Ireland Assembly Member and a member of Ards borough council, in my constituency, I had some influence on this issue. The council was concerned about the effects of sunbeds, and it was aware of the importance of controlling, monitoring and regulating them. It took decisions to do that, and other councils took similar initiatives. Again, that shows we have done things in the way they should have been done.

Again, I congratulate the hon. Member for Gainsborough on bringing this important matter to Westminster Hall for consideration. I very much look forward to the Minister’s response. I hope that my comments about what we do in Northern Ireland have been helpful, and that is particularly true of my comments about the pilot scheme and the way in which triage can work with GPs, hospitals and, more importantly, the patient.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 26th November 2013 Commons Chamber

[Mr Hunt]

The Labour party does not like to hear this, but the reality is that micro-managing the NHS through top-down targets failed to deal with the problems of compassionate care. My hon. Friend is absolutely right that the best way to deal with this is through total transparency, so that when we are sure there is a problem, the public find out about it quickly and it is dealt with quickly.

[Jim Shannon (Strangford) (DUP)]

Compassionate care must be central to the NHS. The Health Minister in Northern Ireland has launched “Quality 2020”, a strategy that is intended to improve care in Northern Ireland. What discussions has the Secretary of State had with the Northern Ireland Assembly and the Health Minister about this issue?

[Mr Hunt]

We are in close touch with all the devolved Administrations about the changes that we are making in the NHS in England, and, interestingly, we are experiencing different levels of engagement. We have had very good discussions with the Northern Ireland Health Minister about some of the changes, but those in Wales are still refusing to commission a Keogh report on excess deaths, which I think shows that Labour in Wales has not learnt the lessons of transparency.

Pharmacies and the NHS

Jim Shannon Excerpts

Wednesday 20th November 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Ipswich (Ben Gummer) on bringing this matter for our consideration today. Although I agree with him on many things, his football team, Ipswich Town, is playing my team, Leicester City, on Saturday, so our opinions will differ on that.

[David Simpson]

You’ll get beat.

[Jim Shannon]

Well, I hope we won’t.

To return to the matter in hand, having run my own business, I can well understand the pressures on businesses—the need to make profit and to pay the bills at home. I can also understand the principle behind paying for what you get and that a good service needs to be paid for. At the same time, however, from what I have read in the media and the considerable background information to the debate today, the scandal of double-invoicing and cashback to the detriment of the NHS cannot ever be accepted.

I take my hat off to the whistleblowers who have highlighted the practice, which it is claimed has robbed the NHS of up to £120 million. The headlines are clear: “Pricing scandal sees NHS pay £89 for cod-liver oil capsules”; “Firms boast of profits on drugs that cost ‘pennies’”; “‘There’s a lot of flexibility over prices’”; “Pharmacies and suppliers accused of price rigging”, and last, but not least, “The NHS, the drug firms and the price racket”. All those headlines are cause for concern.

I have asked several questions of the Secretary of State regarding the provision of new cancer drugs, Alzheimer’s drugs or any number of other new drugs that are not accessible on the NHS. How do I tell my young constituent suffering from cancer that there is no funding for a drug that has been proven in other countries to help when she is reading about double-invoicing? Is the cost of her life so little for the House that we can allow the practice to continue? I have asked those questions of myself and my constituents ask me them, too.

I was angered when I read about £10,000 monthly kickbacks and other horror stories. It is clear that any agreement needs to stop that from being able to happen. I have the greatest respect for the Minister and I am sure he will hit on such issues in his response. If we need new legislation that enables the NHS to go deeper than merely checking invoices, so be it. It concerns me greatly to think of the number of families who could have received life-changing help this year with the money—our money, our constituents’ money—that has been lost to those who are working the system. That has to stop.

Many heads should hang in shame over how bills have been creatively put together by providers, but I cannot simply allow the Government not to understand that they need to do more.

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

Does my hon. Friend agree that one of the most significant recent statements in the press was when a senior executive of one of the large companies said that it would be more than happy to agree to a 70% discount if that is what it took to get the contract? That is a damning indictment of the original price.

[Jim Shannon]

I thank my hon. Friend for that helpful contribution. The contributions from him, my hon. Friend the Member for Upper Bann (David Simpson) and others may focus the Minister’s attention.

On the availability of medicines, I have read that the National Institute for Health and Care Excellence has approved fewer than one in three medicines since 2005. A recent letter from nine major pharmaceutical companies to The Daily Telegraph started with something that I agree with. I am sure that any Member and, more importantly, any doctor or care worker in the NHS, will also agree with it:

“Medicines should not just be seen as a cost.”

They should first and foremost be about healing and curing illnesses. The letter continues:

“They are an investment and an essential part of improving patient outcomes. Yet…the proportion of medicines refused by NICE is only increasing.”

That is a concern for me, too. Jonathan Emms, UK managing director at Pfizer, has said:

“Right now NICE is saying ‘no’ too often. It is blocking many innovative new medicines from reaching the UK patients who need them most, medicines that are often readily available in Europe.”

Will the Minister say what contact he has had with NICE about not making available in the UK drugs that are available in other parts of Europe?

Although it is hoped that the agreed deal will save the NHS £1 billion over two years, it is essential that that saving goes into making more drugs available for the healing of those who need them and not simply the healing of the deficit. Will the Minister assure me and the House that the savings made will go into the provision in the UK of drugs that have been widely tested and that are widely available in Europe?

[Oliver Colvile]

Does the hon. Gentleman recognise that drugs and medicines can be dangerous if they get into the wrong hands? Pharmacies also have to face people using the internet to acquire drugs, which is an option that does not carry the same regulation that we expect in the domestic market.

[Jim Shannon]

I thank the hon. Gentleman for that contribution. It is something that many of us have highlighted and I know that the Minister has spoken about it in the past. The availability of drugs on the internet is an anomaly in the system, and perhaps the Minister can give us an indication of how best to deal with it.

Back in April, we were told that the number of cancer drugs on the approved list was to be halved. Will the Minister commit to ensuring that the savings will be used to increase the amount of drugs that might save lives and give a better quality of life?

I read the story of a mother with terminal cancer, who was forced to fund herself a drug that she believed would give her extra time with her young children, after being refused by a special Government fund. I find such stories incredible, hearing about the real heartache and issues that impact on family lives, and yet we—as collective representatives—are unable to help and assist as we should. In America, Obama is trying to bring in a health care system similar to ours. It is referred to as Obamacare—people say that it will make or break him, and it probably will. We, however, seem to be turning ourselves into an American system, whereby we have to fundraise to get treatment. That is certainly not what my constituents or I pay our taxes for, and I am sure that others agree with me.

I want to make a quick comment about Northern Ireland, where our Health Minister abolished prescription charges. That was done on the understanding that cheap generic drugs were not prescribed. Health is a devolved matter in Northern Ireland, and our Minister made a decision, which I support entirely. Will this Minister—I ask this with respect—liaise with the Northern Ireland Minister, Edwin Poots, to ascertain how the scheme is working and how we have been able to stick within our budget in Northern Ireland on prescription drugs?

The right hon. Member for Rother Valley (Mr Barron) made a valuable contribution today. One of the things that he referred to was the drugs that people have and do not use; they sit until they go out of date and are then dumped. In Northern Ireland, the Minister, the GP surgeries and so on have taken steps to ensure that the prescription of drugs is better controlled. Sometimes, people might run out of drugs, rather than having extra in the cupboard, but such steps help and take away wastage in the system. The right hon. Gentleman made that clear in his contribution.

Over the years in Northern Ireland, through the Minister and in co-operation with the pharmacies, we have also tried to reduce the number of people attending accident and emergency. If people have a minor ailment, they should go to their pharmacist or chemist; he or she will be able to give some direction on what needs to be done. There are ways and means of good practice, to which I have referred on many occasions. I say what we do in Northern Ireland with humility, but we actually do some things very well. If such things are done well, they can be a marker for elsewhere.

Time is flying past, but changes clearly need to be made soon. Yes, pharmaceutical companies and pharmacies need to make a profit, but that must be done in the right way; we need legislation in place to ensure that that is done in such a way. Yes, NICE must protect people from drugs that promise all, but deliver nothing, and yet that cannot be used to count pennies and to justify saying no to drugs that will make a difference.

Finally, yes, Government must make savings, but those cannot be taken from the most vulnerable by denying them treatment; any savings should be used for new drugs, to give people a better chance of life, for the sake of our constituents in the whole of the United Kingdom of Great Britain and Northern Ireland. We are not talking simply about numbers on a hospital list—the changes need to be made, and made soon.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

We have had a wide-ranging debate today on issues such as the deregulation and regulation of pharmacies, the local provision of pharmaceutical services and the extension of the role of pharmacists and what they do in our communities. Importantly, we have also discussed pricing and behaviour that, if not fraudulent, is certainly very irregular on behalf of some pharmacists and drugs companies. I hope that I will have time to deal with all those issues, but I will write in more detail to any Member here today who feels that more points need to be answered.

Before I go any further, may I say that it is a pleasure, as always, to serve under your chairmanship, Dr McCrea? We took part in many sittings together when the Health and Social Care Act 2012 was considered in Committee, and it is always a pleasure to serve under your chairmanship. I congratulate my hon. Friend the Member for Ipswich (Ben Gummer), my constituency neighbour, on securing today’s debate. It is important to recognise that our NHS is not only about doctors and nurses, but about midwives, physiotherapists, occupational therapists, heath care assistants and all the other people who contribute to the health of the nation every day, including pharmacists, who play an increasingly important role in delivering high-quality local health care and who are embracing the enhanced role that they have been offered under the 2012 Act. It is right that we put on record our thanks for the work that pharmacists do every day.

The right hon. Member for Rother Valley (Mr Barron), in an excellent, considered speech, made some very good points. In particular, he said that community pharmacists are the face of our NHS in many communities. He is absolutely right in saying that because, particularly in more deprived areas of the country, pharmacists are often the first point of call for advice—whether on simple details about medications or for important primary health care advice. Pharmacists perform that role every day. We should be grateful to them for what they do, and I put on record my thanks for that work.

It is important to put on record that pharmacies are in robust health. Although we debate deregulation and difficulties, we know that there are more NHS community pharmacies than ever before—more than 11,400 in England—and they are offering health care, treatment and healthy lifestyle advice and support throughout the country. They dispensed more than 900 million prescription items last year, which is up 53% from 10 years ago, and about 2 million prescriptions are handed out every day by pharmacists. Therefore, we have an industry, as part of our NHS and in its commercial activities and other work, that is in robust health and is performing a valuable service for our NHS.

Of course, we could get into the issues that the right hon. Gentleman rightly raised on the appropriateness of prescribing medication. The chief medical officer talked in some detail in a report about the need for GPs to look sometimes at the appropriateness of the antibiotics that they prescribe and about how we need to look at antimicrobial resistance in this country. The right hon. Gentleman made his points very well, but I hope that he will forgive the fact that I shall not address them directly in today’s remarks. However, he was right to make them and the chief medical officer certainly agrees with him, as do I.

I shall deal with other points that have been made, but initially, I would like to address the important points made by my hon. Friend the Member for Ipswich. We rightly value the innovation and the opportunities that pharmacists have to innovate and support their local communities in different ways. Because they are centred in the community, only pharmacists are able to use such methods. I had the pleasure of attending the annual pharmacy awards and looking at some of those ways. I saw pharmacies, embedded in local communities, making a real difference in providing health and lifestyle advice and improving the quality of care available to local patients.

At the same time, although we want to encourage and support innovation—the pharmaceutical price regulation scheme, or the PPRS, was recently renegotiated and enhanced to give pharmacists the opportunity to innovate exactly as I have described—we also need to recognise that we have a publicly funded national health service, which is a point that has been made across the Chamber today, and we are very proud of it. It is free at the point of need, and it is important to ensure that the money that is given to the health service, whether to pharmacies or to other parts of the NHS, is properly spent, and there is also a role in ensuring that services are provided in a safe and effective way. I shall come on to some of those points later.

My hon. Friend the Member for Plymouth, Sutton and Devonport (Oliver Colvile) has been a consistently strong advocate for the role of pharmacists, and he made his points very well today. The hon. Member for Strangford (Jim Shannon) also made a useful and powerful contribution, which was picked up by the hon. Member for Copeland (Mr Reed) a few moments ago, about the importance of ensuring that there is no fraud in the system and that pharmacists always behave appropriately. I am sure that the majority of the time pharmacists behave appropriately and make a very valuable contribution. When there may be fraudulent behaviour, it is right to pick up on that and investigate it. I will come back to that in a moment, because we all want to see high value for money from our NHS and to make sure that the money is spent on patients and not wasted. I think that that is something that we all agree with and believe in across the House.

I turn to the important issue of pricing. The vast majority of drugs that are prescribed are either covered by the PPRS or are generics, where competition helps to keep the price down. We recently introduced a price for common specialists, but a small number of prescriptions, as has been mentioned in the debate, fall outside the pricing mechanisms that are in place. We are working with the Pharmaceutical Services Negotiating Committee to find a better mechanism to encourage pharmacists to seek lower prices.

Where there may be cases of fraud, it is right that we investigate them, and they are investigated. NHS Protect exists to safeguard—to protect—against fraud in the NHS. That has been a consistent policy; it was followed by the previous Government, and it has been followed by the current Government. The reason why we need services such as NHS Protect is to ensure that if there is fraudulent practice—in this case, potentially in the behaviour of a small number of pharmacists in dealing with small, unique areas of pricing—it is investigated properly. I will ensure that either I or Earl Howe, who is the Minister responsible, writes to the hon. Member for Copeland to inform him of where we have got to with the investigation.

The other point, which was made by the hon. Member for Strangford and is very important, is that we want to ensure that money goes on patients. There is increasing demand for drugs. It is very good that the NHS is continually innovating and developing more treatments, better surgical techniques and improved drugs and mechanisms. Of course, when drugs are used in the NHS, they need to be evidence-based, but I hope that he will agree that it is good that we have set up the cancer drugs fund, which has helped to increase the speed at which people with cancer receive drugs. More than 30,000 people have benefited from the cancer drugs fund and received cancer drugs. We should all be pleased about that and proud of it.

[Jim Shannon]

I thank the Minister for that positive response. I outlined in my contribution a couple of examples of people who did not access the cancer drugs fund, but in my mind clearly should have qualified. Is he prepared to look at that issue to satisfy those people who need drugs urgently because of the time they have left on this earth?

[Dr Poulter]

On how drugs are accessed, one of the problems—this was why the cancer drugs fund was set up—was that some people, as the hon. Gentleman rightly outlined, had been receiving drugs in other countries for many years, but we in this country were a little slower to respond to some of those innovations. But of course we need to ensure that, whatever fund we set up for providing medications, those medications are shown to be effective and there is an evidence base for them. However we do things, there will always be new treatments on the horizon that we would like to get through to people more quickly, and we need to ensure that those treatments are always evidence-based. I think that we can be pleased that the cancer drugs fund has made a significant difference by providing treatments in a more effective and much quicker manner, but if the hon. Gentleman would like to discus the matter further, I would be very happy to see him and talk it through in more detail.

I think that it would be useful for me, picking up on the points raised early in the debate, to outline the processes involved in opening a pharmacy. Anyone can open a pharmacy anywhere, subject to the premises being registered with the General Pharmaceutical Council, when the owner’s service model includes the sale or supply of pharmacy medicines or prescription-only medicines against prescriptions from that pharmacy. However, there are extra criteria for providing NHS pharmaceutical services. Anyone wanting to provide NHS pharmaceutical services is required to apply to the NHS to be included on a pharmaceutical list.

Before September 2012, there were control of entry requirements. The NHS (Pharmaceutical Services) Regulations 2005 determined whether a pharmaceutical contractor could provide NHS pharmaceutical services. In England, no new contractor could be entered on to a PCT pharmaceutical list unless it was “necessary or expedient” to secure the adequate provision of pharmaceutical services locally. That was the control of entry test. If a new service provider was judged neither necessary nor expedient, the NHS, or the PCT in question, had to refuse the application. There were rights of appeal to the family health services appeal unit, which is run by the NHS Litigation Authority. That was available if there was a concern.

Part of the reason for the strict criteria relates to the pricing mechanism and how pharmacists are paid, which I will come to later. Obviously, the local health economy is an issue, and pharmacists are not paid just for the number of prescriptions that they provide; they are also given a baseline fee. When we have a publicly funded health service and we need to ensure that need and demand are aligned, it is important that we look at this in the round. I sympathise very strongly with the points about the need to de-bureaucratise the NHS where possible—those were good points well made—but we also have to recognise that this is not just about arbitrary mapping; it is about aligning need and demand for a service within the pricing framework in place. That is not just about the number of prescriptions that are provided; it is a much more complex mechanism. I will come to those points later.

Urgent and Emergency Care Review

Jim Shannon Excerpts

Tuesday 12th November 2013 Commons Chamber

[Mr Hunt]

The hon. Lady makes some important points, and I congratulate her on being the first Opposition Member to raise the fact that it has become harder and harder to get an appointment with a GP. [Interruption.] I know that it is hard to accept, but it is a fundamental problem, and a challenge facing our A and E departments that the Government are determined to sort out.

[Jim Shannon (Strangford) (DUP)]

Before tomorrow’s report on the urgent and emergency care review, may I tell the House that in Northern Ireland, we treat urgent referrals by direction to the doctor on call and linking up with the chemist. Emergency referrals are done through hospitals, showing good practice and delivery. Is the Secretary of State prepared to contact the Northern Ireland Assembly and the Minister responsible to see how best practice works?

[Mr Hunt]

I am in regular contact with the Northern Ireland Minister for Health, Social Services and Public Safety about good practice in Northern Ireland, and I am delighted to hear that they are doing some good things in urgent and emergency care. We should be open to all good practice, not just in our country but all over the world.

Hearing Loss in Adulthood

Jim Shannon Excerpts

Tuesday 12th November 2013 Commons Chamber

[Lilian Greenwood (Nottingham South) (Lab)]

I am glad that we are debating an issue that affects all our constituencies, and I know that it is a matter of real concern to many Members in this House and in the other place.

I would like to begin by paying tribute to the work of the Ear Foundation, a cochlear implant support charity in my constituency. I was glad to secure the debate, and I hope that it will draw attention to the vital work it does to support adults and children with hearing loss.

One in six people in the UK experience hearing loss, and seven in 10 can expect to be affected by the time they reach their 70th birthday. That means that 10 million people live with hearing loss, and an ageing population means that that number will rise in the years ahead. To communicate is to be part of society. Losing one’s hearing is not just about the absence of sound—if not addressed, hearing loss can result in the loss of our social life, cutting us off from family, friends and work.

Deafness in adulthood is linked to depression, unemployment, poor mental and physical health and an increased risk of other conditions, including dementia. Hearing loss is a constant condition, and in most cases there is no cure. It is no exaggeration to say that it can destroy lives. People with hearing loss can find it difficult to negotiate everyday challenges in the workplace, on the bus, at the supermarket, or in the local doctor’s surgery, leading to isolation, exclusion and frustration.

Research carried out by Action on Hearing Loss has found that adults who lose their hearing are likely to withdraw from social activities. When they do take part, communication difficulties can result in feelings of loneliness. Hearing loss can also damage personal relationships. Many deaf people find it difficult to join in with family conversations and jokes. Couples say that they feel more distant from their friends, and partners of people with a hearing problem describe feelings of loneliness and frustration. Travelling on public transport becomes a challenge, and a platform alteration or a delayed connection can be a major problem if someone misses the announcement. That can leave deaf people feeling anxious and vulnerable when travelling, and worried about being stranded or lost. The debate among policy makers focuses mainly on quality-of-life issues, but failure to address hearing problems has implications for society as a whole.

[Jim Shannon (Strangford) (DUP)]

I have sought the hon. Lady’s permission to intervene in the debate. In Northern Ireland, 300,000 adults experience deafness or tinnitus—a sixth of the population, which is similar to the rest of the United Kingdom. Does she agree that a UK-wide strategy—and perhaps the Minister would respond to this—would benefit the core of the community across the United Kingdom, especially people with deafness?

[Lilian Greenwood]

I thank the hon. Gentleman for his intervention. He is quite right: these are issues that affect the whole of society, and I hope that the Minister will respond positively to his suggestion.

A 2006 study estimated that unemployment resulting from hearing loss cost the UK economy £13 billion a year. Too many people are forced to resign, retire or face redundancy as a result of their disability. People with hearing impairment report that their employers often have a passive attitude, providing adjustments and support only when prompted, and a significant number face outright discrimination.

Of the 300,000 people of working age with severe hearing impairment, 20% report that they are unemployed and are seeking work. Another 10% report that they cannot seek work as a result of their condition. As the state pension age rises and more jobs depend on communication skills than was the case 20 or 30 years ago, that vulnerability to unemployment is a growing problem. It represents a worrying underuse of the economic capacity of the nation.

Despite the scale and impact of hearing loss in the UK, adults with profound and severe hearing problems face major challenges when accessing health services. For many people, even seeing their GP can be a challenge, especially when surgeries rely on telephone booking systems and do not use visual display screens. One in seven respondents to an Action on Hearing Loss survey reported missing the call for their appointment while sitting in the waiting room. Poor deaf awareness among health professionals, such as not looking directly at a patient to allow for lip-reading, can lead to patients with hearing loss feeling unclear about the medical advice or information provided. According to the same survey, 28% of people with hearing loss have been unclear about a medical diagnosis and 19% have been unclear about their medication.

Diagnosis of hearing loss among adults is too often down to chance. Many are reluctant to seek help, and evidence suggests that people wait an average of 10 years before doing so. Stigma is a key factor in this delay in taking up hearing aids, which makes some people unwilling to tell others about their hearing loss. An Action on Hearing Loss report found that one element of stigma is the fear that deaf people are seen as less capable. A 2005 MORI poll of more than 20,000 people showed that one in five expressed concern about being treated differently.

Earlier diagnosis is essential to ensuring that people with hearing loss can access the support and services that can help them best manage their condition. A hearing screening programme for people aged 65 would help to overcome some of the barriers that prevent people from addressing their hearing loss. I pay tribute to the hon. Member for Eastbourne (Stephen Lloyd), who has led the Hearing Screening for Life campaign. Research by the consultancy London Economics suggests that such a programme would represent good value for money, so will the Minister consider establishing a pilot hearing screening programme?

There are approximately 4 million people with undiagnosed hearing loss in the UK who could benefit from hearing aids or, in a smaller number of cases, a cochlear implant. However, research suggests that GPs are often reluctant to refer patients for assessment or lack the knowledge to do so. Forty-five per cent. of patients presenting hearing loss symptoms are not referred, so something is clearly amiss. GPs’ lack of awareness of the impacts of deafness in general and a lack of knowledge of the benefits of cochlear implantation in particular give rise to concern. Greater education of GPs and audiologists on hearing technologies and the potential benefits of cochlear implantation for adult patients is therefore vital. I would be grateful if the Minister updated the House on the Government’s plans to ensure that training and updating on hearing technologies is provided consistently across the country.

Despite the obvious need, there is relatively little recognition of the impact of hearing loss or of the latest technologies that can improve hearing. We know that hearing aids improve adults’ health-related quality of life by reducing the psychological, social and emotional effects of hearing loss. For those who are severely or profoundly deaf, and for whom hearing aids offer little benefit, cochlear implants offer the chance of useful hearing.

[Jim Shannon]

I thank the hon. Lady for giving way; she is being very gracious. One of the issues that have come to my attention as an elected representative is that hearing aids are sometimes thought of as a big thing attached to the ear, but thanks to the advance of technology hearing aids are very small now. Perhaps that means that cosmetically they are less noticeable, and people can have the implant and lead a normal life. Is that one of the things that the hon. Lady feels should happen?

[Lilian Greenwood]

My hon. Friend is right. There is a need to increase awareness of what a cochlear implant is, how it operates and even what it looks like.

Despite the digital revolution in the NHS, in which high-quality hearing aids are now routinely fitted, there remains an under-utilisation of implants for adults, notwithstanding comparable advances in implant technology. One person who has benefited is Abigail from Nottingham, who found her implant an enormous benefit to her life. She was born deaf and grew up wearing two hearing aids until her hearing deteriorated, and doctors told her that hearing aids were no longer of benefit to her. Following detailed and intensive assessment she was approved for an implant, and when this was switched on it gave her new-found confidence. It rebuilt her self-esteem, enabling her to communicate more comfortably with her husband, family, friends and colleagues. Having a cochlear implant has given her a new lease of life, without having to rely on others to help her with communication, such as by telephone. It has also helped her immensely at work, where she can now communicate with colleagues on an easier level. It has helped her gain promotion and do a job that she enjoys. The cochlear implant has enabled her to get on with life at home, at work and socially, and with her hobbies, including music. She also does volunteering work in the community.

A cochlear implant stimulates the hearing nerve by means of rapid electrical impulses, which bypass the non-functional inner ear in people who are severely or profoundly deaf. Sounds heard with a cochlear implant are not the same as those heard with a human ear, but with the right support a person with a cochlear implant can adapt to the novel signal and use their implant to understand speech and other sounds, much like normal listening. One cochlear implant recipient said:

“I feel that so much of my previous life and true self has been restored, regaining my pride and ability to contribute actively in society on an equal basis.”

The late Lord Ashley, who is remembered and was rightly held in extremely high regard by many in this place, was known to call his cochlear implant a miracle. Surely it is time that everyone who needs a cochlear implant had access to their own miracle. There are an estimated 100,000 people with profound hearing loss, and 360,000 with severe loss. Although it is difficult to determine the exact number of adults who need an implant, on any of the current measures of profound deafness the current level of provision for cochlear implantation would appear to be significantly below any predictions of need.

The Ear Foundation suggests that as few as 5% of adults who might be able to benefit from an implant are currently getting one, and the UK is fitting only half the number of implants in adults as Germany and Austria. Speaking at last month’s Westminster launch of the Ear Foundation report “Adult Cochlear Implantation”, Dr Andrew Dunlop, a GP who suffered sudden hearing loss himself, described his own experience of deafness, undergoing assessment and receiving a cochlear implant. He said:

“I was fortunate, that as a healthcare professional, I knew my way around the system and was not overwhelmed when dealing with fellow doctors, audiologists and consultants. Sadly, the story for less informed individuals is not quite the same. My return to Practice emphasized to me just how much of an iceberg of unmet need is within the community at large, with many very able individuals assuming wrongly that they have no options after optimal provision of hearing aids and seem reduced to a second class life of social isolation, loss of self-esteem and frequently unemployment.”

Today’s debate is my attempt to chip away at that iceberg.

The criteria for implants are set by the National Institute for Health and Care Excellence, with guidance last reviewed in 2011. However, the criteria are based on evidence from patients who were predominantly wearing technology from the late 1990s, and since then there have been significant advances in cochlear implant technology. Many clinicians would argue that the criteria do not reflect real world listening, and that more realistic tests should be deployed instead.

Since the last review, there have been supportive studies on the effectiveness of bilateral implants—one implant for each ear—which NICE believes provide too little benefit for adults to justify NHS funding. One patient who was refused implantation described the process as follows:

“The conditions they did the testing in were ideal. It was perfect but they made no allowance for the difficulties you get if somebody is talking from the side, or if there is any background noise…and of course under those circumstances you do very well and it makes no allowances for the problems you run into in real life.”

In addition, the use of sentence tests, rather than monosyllabic words, enables deafened adults to use their previous linguistic knowledge to complete the test, thus appearing to have hearing that is too good for cochlear implantation. Brian Lam and Sue Archbold, authors of the Ear Foundation report, conclude that there is an urgent need to look at the deployment of a wider range of tests. They also argue that testing in noise and assessment of performance with monosyllabic words would be more appropriate. This would reflect current practice in Germany, where criteria are more flexible.

A growing body of evidence indicates that bilateral implants provide added improvements in speech perception in noisy environments over unilateral implantation, and better sound localisation, leading to improved quality of life. The Ear Foundation has recommended that NICE review its current guidance on cochlear implantation, and in particular on the criteria for unilateral and bilateral implants for adults. Will the Minister look into this matter and consider asking NICE to conduct such a review? Does he agree that where a clinician believes that it is in the best interests of an individual patient, there should be some discretion in applying these guidelines?

Charities in the field have welcomed the Department of Health’s development of a national hearing loss action plan, but they are disappointed that it has been delayed by a year. I join those charities in urging the Government to prioritise its publication. Last month the noble Baroness Jolly stated in the other place that the Government aim to publish the action plan as soon as possible. I would be grateful if the Minister updated the House on when it will be published and how its implementation will be monitored. Has he assessed the suggestion of establishing a lead commissioner for audiology so that there is greater focus on good commissioning across all clinical commissioning groups?

The right hon. Member for Gordon (Sir Malcolm Bruce), who chairs the all-party group on deafness, last month challenged the Government, and any Government who come after them, no longer to leave deaf people behind. Today I echo those words. I hope that the Government can help move this issue, which affects all our constituencies, beyond debate and ensure that action is taken to address it.

[The Minister of State, Department of Health (Norman Lamb)]

It is a pleasure to serve under your chairmanship for the first time, Madam Deputy Speaker. I congratulate the hon. Member for Nottingham South (Lilian Greenwood) on securing the debate and championing this cause. I will state at the start that I am very happy to maintain a dialogue with her on this, because she has made a powerful case and clearly a lot of progress could be made not only by the Government, but across the health and care system. I am happy to assist in that regard. I also pay tribute to my hon. Friend the Member for Eastbourne (Stephen Lloyd), who has done a lot of work in championing this cause, as the hon. Lady mentioned, and the Ear Foundation for its work on this important issue.

The hon. Lady made a good case for why this is so important. She talked about the importance of basic communication and the fact that hearing loss can affect mental health as well as physical health and lead to withdrawal from social activities. She talked about the cost to society, the impact on employment and the fact that there is poor deaf awareness among health professionals and that better training is needed. I absolutely agree with her on all those points.

Over 10 million adults in England are living with hearing loss. Some of them will have been among the one in 700 babies in England born with hearing loss, but many will be among the growing number who develop a hearing impairment during their lifetimes. For some people that will be the sort of age-related hearing loss that many of us will experience as we grow older and that will become increasingly common because of our ageing population, but for many others hearing loss is acquired and should therefore be avoidable.

The World Health Organisation considers half of all cases of hearing loss to be preventable—for example, by immunisation, early treatment or reducing exposure to noise. In fact, it identifies exposure to excessive noise as the major avoidable cause of permanent hearing impairment worldwide. In developed countries, it is at least partially responsible for more than a third of all hearing impairments. As a result of the UK’s ageing population, the impact of working with noisy machinery and exposure to loud music and other loud noises, the World Health Organisation predicts that by 2030 there will be an estimated 14.5 million people in the UK with hearing loss, and adult-onset hearing loss will be among the UK’s top 10 disease burdens. That demonstrates the scale of the concern.

We have to take hearing loss seriously, which is why we are currently looking to develop the action plan on hearing loss, which the hon. Lady mentioned, so that we can achieve better outcomes for all those with hearing loss and related conditions. The action plan will identify key actions that will make a real difference in improving health and social care outcomes for children, young people and adults with hearing loss and generally improving the hearing health of the population.

The Department of Health is engaging with a range of organisations in developing this action plan, and as Baroness Jolly mentioned, we aim to publish it as soon as possible. I will get back to the hon. Lady with an indication of the likely publication day. It is time that we set a target date and then focused minds on getting it published.

[Jim Shannon]

We have a UK-wide diabetes strategy, and in my intervention on the hon. Member for Nottingham South (Lilian Greenwood) I suggested a UK-wide strategy on deafness as well. Will the Minister consider that?

[Norman Lamb]

My responsibilities stretch only to England, but clear co-ordination and joint working with the devolved Administrations absolutely make sense on an issue that transcends borders, so I agree with the ambition that the hon. Gentleman sets.

This cannot just be about prevention because that is not always possible; it is also about dealing with the consequences of hearing loss. The Government are committed to delivering health outcomes that are among the best in the world for people with hearing loss. We are developing measures to identify those with hearing loss as early as possible, including the roll-out of a national hearing screening programme for newborn babies that enables the early identification of deafness, providing a clear care pathway for services and allowing parents to make informed choices on communication needs.

Today, however, we are focusing on adults with hearing loss. I realise that there is currently considerable interest on hearing loss screening for adults, which the hon. Lady mentioned. The UK National Screening Committee advises Ministers and the NHS in all four countries on all aspects of screening policy. Using research evidence, pilot programmes and economic evaluation, it assesses the evidence for programmes against a set of internationally recognised criteria. In 2009, the committee recommended that routine screening for adults’ hearing loss should not be offered because of a lack of evidence to warrant such a screening programme. However, as part of its three-year review policy cycle, the committee is reviewing the evidence for a national adult hearing screening programme. A public consultation will be held shortly and details will be available on the committee’s website. I encourage the Ear Foundation and many others to contribute to that consultation.

We welcome the recent report by the Ear Foundation, which clearly sets out the benefits of cochlear implants for children and adults. Abigail’s story, as told by the hon. Lady, demonstrates what a massive impact that can have on an individual’s life. It completely transformed her life, and no doubt that experience is repeated very many times around the country. The report will be of enormous use to NICE if it decides to update the technology appraisal that it published in 2009. I encourage the Ear Foundation to engage with NICE. I am sure that it is already in touch, but it is very important for it to provide any emerging evidence to NICE to help it to update, if necessary, the guidance provided on implants.

A large number of services are already commissioned for people with hearing loss, and a number of specialist centres in England provide implants for children and adults. It is important that GPs understand the criteria for referral, as well as the obvious benefits of this technology for people with hearing loss. That touches on the hon. Lady’s point about the importance of health professionals, whether GPs or anyone else in the health system, gaining a better understanding of the potential for this technology. There have been considerable improvements to services for people with hearing loss in recent years, including reduced waits for assessment and treatment to within 18 weeks—a significant advance.

Cancer Patient Experience

Jim Shannon Excerpts

Wednesday 30th October 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I am grateful, Mr Owen, for being called to make a contribution to this debate. It is on cancer patient experience, but we will all have personal experience of the issues. I congratulate the hon. Member for Hertsmere (Mr Clappison) on tabling the subject for debate. In his introduction he rightly said that the debate refers to the NHS in the UK, and there are four Northern Ireland MPs here because each of us can contribute to the debate by relating our experiences. I hope that the Minister will consider a strategy that involves not just the mainland, but all four regions.

As I was saying to my hon. Friend the Member for Upper Bann (David Simpson) earlier today, when I first considered my contribution to the debate, I realised that I have never before known so many people in my age group, so many of my friends and so many of those just older than me who have had cancer, and I have never experienced so many people passing away as a result of it.

I have had a number of meetings with the Minister back in Northern Ireland, Edwin Poots, and I intend to have a public meeting in my constituency to review cancer care with the general public and the trust and look at how best we can do it. My frustration is compounded by discussions with the trust. I do not want to be critical, because that is not how I do things—I try to see how we can move forward and be more positive—but I am concerned about the magnitude of cancer cases in my area and across the United Kingdom. I suspect that other Members will confirm what I already know. A 10% increase in cancer cases in Northern Ireland is extremely worrying.

My father and sister suffered from cancer. Of the four staff employed in my Newtownards office, my parliamentary aide had two grandparents die from cancer and her father suffers from cancer, my secretary had her mother die from cancer and she recently buried one brother-in-law to cancer and has another undergoing chemotherapy. Only my office manager seems to have escaped cancer in their immediate family. Some 75% of my office staff have experienced cancer in their close family and individually.

If we look into the community, we can see that my examples provide an accurate reflection of the way that cancer affects entire communities. Someone in the United Kingdom is diagnosed with cancer every two minutes. More than one in three people in the UK will develop some form of cancer during their lifetime, which is a horrifying statistic. The risk of developing cancer before 50 is 1 in 35 for men and 1 in 20 for women, so the situation is more extreme for ladies.

As elected representatives, our constituents often come to our offices to ask how to find their way through the benefits system. They experience health pressures to start with, but financial pressures soon follow. Just yesterday, my hon. Friend the Member for East Londonderry (Mr Campbell) and I went to the Macmillan Cancer Support reception here in the Houses of Parliament and we had the important opportunity to speak to carers. I will highlight some of the issues raised as we go through this debate.

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

Before my hon. Friend moves on to discuss carers, which is an important matter, does he agree that a big issue is people’s reluctance and sometimes failure, in particular among us males, to visit the GP when there may be a problem? We should encourage everybody, but males in particular. I do not understand the logic. If my television does not work, I get a TV repair man in. If the washing machine does not work, I get the washing machine repair man in. If people have a health problem, they go to their GP. Unfortunately, however, males seem reluctant to do that.

[Jim Shannon]

I thank my hon. Friend for that contribution. The males of the species do tend to wait just that wee bit longer. I will not relate my personal case to Westminster Hall, but we do sometimes leave things a little longer than we should, which is perhaps a failing on our part. The Health Minister and his Department in Northern Ireland have run several campaigns to highlight prostate cancer in particular. It may be that MPs know more people, but I have two close friends who were diagnosed with cancer. Thankfully, in both cases, they acknowledged early that something was wrong and went to their doctors and were then referred for health checks. I am happy to say that the treatment that they are now receiving will save their lives, but if the diagnoses had been made a couple of months later, I suspect that it may have been different. My hon. Friend is absolutely right. Entire families and communities are affected by this cancer pandemic. The House must deliver an effective strategy to help those experiencing the scourge of cancer.

I read with great interest the Macmillan report and the hon. Member for Hertsmere outlined the many cancer organisations and societies that do tremendous work. Macmillan’s document, “Improving care for people with cancer: Putting cancer patient experience at the heart of the NHS”, wants patient care at the core of the NHS and I heard yesterday from carers and people involved with Macmillan how important that is. The report references England and Wales only, but the overall message is mirrored throughout the UK, and the other Northern Irish Members and I are here today to provide the experience of Northern Ireland.

I recently met Edwin Poots, the Minister of Health, Social Services and Public Safety in Northern Ireland, regarding the provision of cancer carers in my area, as it is clear that changes that could really make a difference cannot be implemented due to a lack of funding, which is part of the problem, and the lack of a strategy for the increases in demand over the next 10, 20 or 30 years. Looking at the Ulster hospital in particular—I am not going to be critical of the staff, who are tremendous and can never be paid enough for what they do—I can see greater demand and that needs to be taken on board. I ask the Minister to consider holding discussions with those in the regions, in particular with the Northern Ireland Assembly and Edwin Poots, because we need a strategy that takes into account the whole of the United Kingdom and not just the mainland. We can work together. Experiences, interests, qualifications and knowledge may differ across the UK, but it is time that we exchanged some of that in order to help each other.

Getting back to the Macmillan report, it states what I am sure that everyone here believes:

“Every person diagnosed with cancer should have a positive care experience and be treated with dignity and respect throughout their cancer journey.”

My hon. Friend the Member for Upper Bann said in his intervention that people needed to be treated as human beings and not just as numbers.

[David Simpson]

Will my hon. Friend join me in praising young carers, who look after family members until Marie Curie or Macmillan move in? Their lives are detrimentally affected by the trauma. Young carers cannot be praised enough.

[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.