Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 14th January 2014 Commons Chamber

[Jane Ellison]

The hon. Gentleman is right to say that it is a serious condition, which is why GPs need to take it extremely seriously and ensure that they look at the tests, and particularly at those who are susceptible to AF. We will get new NICE guidance in the summer on some aspects of self-monitoring, which will be an opportunity to remind all clinicians of their responsibilities.

[Jim Shannon (Strangford) (DUP)]

There is a community resuscitation strategy for the whole of Northern Ireland, and my constituents in Strangford, the Ards peninsula and Crossgar have examples of that. Will the Minister consider a community resuscitation strategy for England and Wales, similar to the one we have in Northern Ireland? It would help in this case.

[Jane Ellison]

I am happy to look at that. It is obviously an NHS England responsibility, but I will ensure that I draw its attention to the scheme that the hon. Gentleman mentions in Northern Ireland.

Joint Committee on Vaccination and Immunisation

Jim Shannon Excerpts

Wednesday 8th January 2014 Westminster Hall

[Mike Freer (Finchley and Golders Green) (Con)]

It is a pleasure to be here today under your chairmanship, Mr Gray. I am grateful to Mr Speaker for granting this debate on the work of the Joint Committee on Vaccination and Immunisation. I requested this debate following the JCVI’s decision on the 2 October 2013 to undertake further work on key issues surrounding the human papillomavirus, or HPV, vaccination programme. I understand that some colleagues may wish to comment on other aspects of the JCVI’s work. I want to focus particularly on the Committee’s decision to consider—I use its word—“urgently” vaccinating men who have sex with men, on attendance at sexual health services, and adolescent males. I intend to focus my remarks on that work now being undertaken with regard to the HPV vaccination programme, specifically in terms of exposure to HPV-related cancers, which are increasing in boys who have sex with females and the MSM community.

The decision of the JCVI to prioritise consideration of vaccinating MSM is noteworthy, not least because the minutes of its October meeting accept that a full economic model might not be necessary where sexual health clinicians can develop independent guidelines. Historically, the JCVI has often rejected vaccination of adolescent boys and MSM on economic grounds, so it is a major step forward for it to say that heath clinicians with expertise—particularly at sexual health clinics—can take such a decision on clinical grounds. That is welcome.

It is important—I have no doubt that my hon. Friend the Minister will need to ensure it—that any decision on extending vaccinations is clinically and financially sound. I do not seek to undermine that decision. I wish to stress the economic benefits of extending the vaccination swiftly, rather than stress other issues of equality, which I raised in an Adjournment debate last year.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this important health matter to Westminster Hall for consideration. There have been significant positive results from vaccinating women and girls for HPV, so clearly there is an advantage shown in doing that. That consolidates the hon. Gentleman’s request for the same vaccination to take place in men and boys as well. Does he agree that the same should happen with regard to men as has happened for women and girls?

[Mike Freer]

The hon. Gentleman makes a good point that repeats some of the discussion we had in last year’s Adjournment debate. The success of the vaccination programme among girls has had a dramatic impact on HPV-related cancers among women. However, the flaw was that it assumed herd immunity for boys who were having sex either with girls or within the herd. But of course, not all boys have sex with girls: some—shock, horror!—have sex with other boys, and not all boys have sex within the herd. Increasingly, in a global economy, and particularly in Europe where the vaccination programme is not the same, adolescent boys in this country are exposed to women who have not been vaccinated. It is important to close the loophole for adolescent boys having sex with unvaccinated girls and those having sex with unvaccinated boys, who, obviously, grow to be unvaccinated men.

If the JCVI has agreed to urgently review the economic case for extending the vaccination programme, why is this debate needed? Before I discuss that, it is worth reminding ourselves what health problems we are trying to prevent. I recall, during the Adjournment debate, seeing the duty Whip sink ever further on the Bench as we discussed certain topics and cancers. This is not a pleasant subject, but I would rather discuss an unpleasant subject than have to deal with it in our hospitals.

Nine out of 10 cases of genital warts are HPV-related; oral-related HPV infections—men are six times more likely than women to have oral infections—increase the risk of cancers of the mouth, throat, neck and head cancers; and there are HPV-related penile and anal cancers: HPV is associated with 80% to 85% of anal cancer in men. In 2009, just after the HPV vaccination programme started, there were more than 6,500 cases of these cancers, with 47% of penile cancer and 16% of head and neck cancers thought to be HPV-related. The latest incidence data show that in 2010 there were 437 incidences of anal cancer and 5,637 of oropharyngeal cancer, 515 instances of penile cancer and 180,000 instances of genital warts. Rates of HPV-related cancers are on the rise in the UK. Throat cancer has overtaken cervical cancer as the leading HPV-related cancer. I am pleased that the JCVI has accepted that there is an urgent need to review the clinical and economic case for extending the programme to adolescent boys and MSM.

I should like to put on record my thanks to the Minister’s predecessor, my hon. Friend the Member for Broxtowe (Anna Soubry),for her support in this matter and for facilitating a teleconference, which she and I and representatives of the Terrence Higgins Trust had with the Chairman of the JCVI, which I believe gave some impetus to this change of heart and the speeding up of the work by the JCVI. That was a significant breakthrough.

The key point in this debate is that although the JCVI’s urgent report is due at some unspecified point later this year, the procurement of the next round of HPV vaccinations will commence in October or November this year. I am concerned that if the JCVI does not report in time and this procurement round is missed, we may have to wait four more years—I believe it is a four-year procurement round—before the HPV vaccination programme is extended to adolescent boys and MSM, if that is the recommendation.

Dementia Care and Services

Jim Shannon Excerpts

Tuesday 7th January 2014 Commons Chamber

[Alec Shelbrooke]

I am most grateful to my hon. Friend for those comments. I am sure that everybody has experiences of their own, but perhaps it will help the House if I speak about my grandmother, as I did earlier. I was aged about 12 or 13 at the time of her diagnosis, and my sister was two years younger. My dad was working as a teacher and supporting me, my mum and our family, but he was also dealing with his own mother. I remember the toll that that took on him. He had to work out what was the best thing to do for his mother. He toiled over the decisions that he had to make for a long time, such as selling the family home in which he had been born and brought up in order to raise money for the care home. My hon. Friend is right that there is a massive toll on the families involved, as well as on the people who have this terrible disease.

Despite the focus on dementia, there is a danger that the momentum that has been created by the Prime Minister’s challenge on dementia, the G8 summit and the work of the Science and Technology Committee and the all-party parliamentary group on dementia will be lost if the Government do not act in a number of areas.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this matter to the House for consideration. Every one of us will have knowledge of this matter personally and from our position as elected representatives. One of the homes in my area has 23 residents and 20 of them have dementia. The magnitude of the problem is tremendous. Does he agree that an exchange of medical information would be helpful? Northern Ireland has the highest diagnosis level in the United Kingdom. Perhaps it is time to exchange the knowledge in Northern Ireland, Scotland, Wales and England to come up with a strategy for the whole of the United Kingdom of Great Britain and Northern Ireland.

[Alec Shelbrooke]

I am most grateful to the hon. Gentleman. I am sure the Minister heard his comments and will perhaps reflect on them when he sums up the debate.

I was talking about a number of areas. First, to continue making improvements along the current trajectory, it is crucial that the national dementia strategy for England is updated from the 2009 version. That strategy identified 17 key objectives for the NHS and social services aimed at improving the commissioning of dementia services, the quality of care delivered in hospitals and care homes, developing a clear picture of research and evidence needs, and providing support for carers. Will the Minister please outline what meetings have taken place about the effectiveness of the NDSE, and say what plans he has for a formal evaluation of it?

Secondly, in spite of the obvious benefits of the national strategy, so far the Government have made no plans to renew it. I welcome the Prime Minister’s challenge on dementia, which is ambitious in its plans and places a welcome political spotlight on the issue. However, that challenge alone does not provide the breadth of detail needed to guide health and social care services to make improvements, and neither does it carry enough accountability measures, which a national strategy would do.

A new national dementia strategy, with guidance for commissioners of health and social care, GPs, hospital trusts, care homes, and others, must be published before the current strategy expires in April this year. It does not seem to be a new trend of coalition Government not to renew national strategies, because in 2011, new national strategies for cancer and chronic obstructive pulmonary disease were published, and one for hearing loss is due.

--- Later in debate ---

[Alec Shelbrooke]

I seem to be one page behind the House in my speech this evening, because interventions keep pre-empting the next part of my speech. My hon. Friend is correct that we need wider support. I have become a dementia friend, as I know many other hon. Members have.

The aforementioned points all combine in reality to have an impact on post-diagnostic support, as well as the support for those who have not been diagnosed but need care. In my constituency, some inspiring examples make me feel optimistic that dementia can be dealt with effectively and compassionately. I have seen at first hand that such support, delivered well and early in a person’s dementia journey can lead to better outcomes.

[Jim Shannon]

There have been great advances in medication. If people get an early diagnosis, medication can give them an extra five to six years of quality life. Does the hon. Gentleman agree that it is important that medication is available across the whole United Kingdom to give people with dementia or Alzheimer’s a better quality of life?

[Alec Shelbrooke]

I thank the hon. Gentleman for that intervention. He makes important points that reflect what the hon. Member for Liverpool, Walton (Steve Rotheram) said earlier: it is not just about treating the disease when it is there, but about how much preventive work can be done in the first place.

As I said at the start of my speech, I wish only that some of the strategies, diagnoses and drugs that are now available were there for my grandmother 25 years ago. I was only about 11 to 13 years old in the two years before she finally went into a home, but I realise in hindsight how her quality of life was slipping away. I talked about the toll that that took on my father when he was trying to do what was best for his mother. He would be at work all day. His mother lived in south-east London while we lived 20 miles away in Kent and he would get a phone call at 3 am from her next-door neighbour saying, “Your mother”—she was in her late 70s—“is out walking the street in her nightgown.” Those are the pressures and there was nothing in place at that time. She was still living on her own and, as her grandchildren, we would still visit her. Today, I believe that she would have had a better quality of life.

I am encouraged by some of the things that are going on. I want to draw attention to a chap called Paul Mancey and his team at Orchard Care Homes. They are located in my constituency and are developing care partnerships between charities and care providers, which is very much what my hon. Friend the Member for Bradford East (Mr Ward) was talking about. This new approach means that residents are tested for hearing loss, diabetes and dementia symptoms on entry to the care home, ensuring that appropriate care packages are put in place.

Many other care homes are developing innovative ideas, too. I am pleased to say that care homes have developed immensely since we moved my grandmother into one in the early 1990s, and even more delighted that the leading company on the development of care villages is located in my constituency. Graeme Lee and his team at Springfield Healthcare have set the bar on building a quality and comfortable dementia-friendly care village at Seacroft Grange, which is located in the constituency of the hon. Member for Leeds East (Mr Mudie).

As is often the case, however, the truly inspirational support networks are not those provided by the professionals. My hon. Friend the Member for Beckenham (Bob Stewart) talked about early diagnosis, and there are community champions. One community champion in my constituency is Peter Smith, who established the Tea Cosy Memory Café in Rothwell, which provides a welcoming place for those with dementia and their carers, as well as making Rothwell the first dementia-friendly community in Leeds.

The Alzheimer’s Society has done great work to promote awareness of dementia. Hon. Members can play a greater role, too, in raising awareness. I alluded to the fact that, like many Members, I am proud to be a dementia friend and to support the work of the Alzheimer’s Society. I urge as many Members as possible to become a dementia friend and to help the Alzheimer’s Society.

--- Later in debate ---

[Norman Lamb]

I very much agree with the right hon. Lady on that. I think that what she argues for is developing. We are not there yet, but it is important that we have developed this ambition to achieve a diagnosis rate of two thirds, which encourages every part of the system to focus on what it needs to do. It is not a nationally imposed arbitrary target; it was based on getting every part of the system to think about what it can achieve by setting ambitious objectives. Collectively, that amounts to an ambition to achieve a two-thirds diagnosis rate, but in itself, of course, a two-thirds diagnosis rate is not good enough. We should not be satisfied when we achieve that; we have to press on. We know that the community in Gnosall has a diagnosis rate of close to 100%, so we should not be satisfied until everyone is getting properly diagnosed on a timely basis. I agree with the right hon. Lady’s point. Under the new system, with the health reforms making clinicians much more involved in the commissioning of care locally, there is a greater chance of getting the engagement of general practice across the country than we perhaps had in the past through the primary care trust route.

[Jim Shannon]

Has the Minister had an opportunity to consider the point I made in my intervention on the hon. Member for Elmet and Rothwell (Alec Shelbrooke), which was about the exchange of good practice and information between the four regions of Scotland, Northern Ireland, Wales and England? Ever mindful that the highest levels of diagnosis for the whole of the United Kingdom are found in Northern Ireland, has the Minister had a chance to discuss these matters with the Health Minister, Edwin Poots from the Northern Ireland Assembly, for instance, to take the issue forward? We all gain from good practice across the whole of the United Kingdom of Great Britain and Northern Ireland, and we all gain from the exchange of good ideas.

Hospices (Children and Young People)

Jim Shannon Excerpts

Wednesday 18th December 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to say a few words in relation to this topic. I thank the hon. Member for Pudsey (Stuart Andrew)—his constituency is wonderfully named—for his contribution. It summed up and set the scene for how we all feel about the matter. We thank him for his compassion and knowledge on the issue; it was a real pleasure.

Whenever I think of this issue, I think of Northern Ireland Hospice and its good work, and of all the other hospices throughout the United Kingdom, which other Members have spoken about, and of the scourge of cancer and specifically how it affects young people. Yesterday we had a debate on rare diseases. Perhaps the two debates could have been merged together—one on rare diseases and palliative care—because they very much go hand in hand.

As well as praising the hospices, I would also like to mention the Macmillan nurses, who, in many cases, make life just that wee bit easier for the families and those concerned. I pay special credit and thanks to those caring men and women who manage to make life that little bit less stressful for those suffering from cancer and for their families.

[Robert Flello (Stoke-on-Trent South) (Lab)]

I, too, thank the hon. Member for Pudsey (Stuart Andrew) for securing the debate, and there is also a hospice—the Donna Louise children’s hospice—in my constituency, which does marvellous work. Will the hon. Gentleman join me in commending the caring professionals, whether volunteers or paid staff, who will be working in hospices over Christmas and new year, caring for people in often difficult, if not tragic, circumstances?

[Jim Shannon]

I thank the hon. Gentleman for his intervention. I do join him in commending them, as does everyone inside and outside the House. We recognise the tremendous work they do—they are on call at all times. I sometimes wonder how they handle the sadness and emotion they have to confront each and every day as part of their vocation.

Northern Ireland Hospice is committed to fostering, encouraging and supporting a quality research culture internally, regionally, nationally and internationally, and it is known for the high level and quality of care it gives. My right hon. Friend the Member for Belfast North (Mr Dodds), who has just left, referred to the Northern Ireland Assembly Health Minister’s commitment to contribute £2.3 million to hospices, and that commitment by elected representatives shows the appreciation of what hospices do.

It is essential that those receiving end-of-life care have the best care available and are made as comfortable as they can be in their last days. It is also essential, as the hon. Member for Pudsey said, that the family have all the information they need, whether that is in a hospice setting, the patient’s home or through a palliative care package—those are the three areas that have to be looked at.

Some 49,000 young children in the United Kingdom of Great Britain and Northern Ireland live with a life-limiting or life-threatening condition and need palliative care. There are inspirational professionals working alongside them in their family homes, hospitals, community settings and hospices across the United Kingdom.

It is horrifying to think that if we had more children’s hospices, they would be filled, because the need continues to grow. Every time we find a drug that works against a strain of cancer, for example, a resistant strain appears. For that reason, it is essential we put money into not simply hospices and nurses, but research, and I am convinced the Minister will take the issue of research on board in her response.

I recently read a report stating there is a real danger that palliative care and palliative medicine will be the least evidence-based subjects in medicine in a few years’ time unless vastly more research is done. While palliative care is vital, research is equally important, so perhaps the Minister can give us some thoughts on that.

I hope we are all blessed with young children and grandchildren who are bubbly and full of life, but some families are not. Those families have to live with a child who is ill, and it is tremendously heartbreaking to acknowledge that. Before yesterday’s debate on rare diseases, the Teenage Cancer Trust sent us some information saying that 30% of children with life-threatening diseases will die before they reach the age of five. Again, that puts things in perspective.

Macmillan nurses told me that the sufferer’s mood is affected by their family. If the parents are content and relaxed, the child is likely to reflect that. This is about the family and everyone involved. It is also about the day trips and the residentials, which the hon. Member for Pudsey referred to.

We have fantastic charities, such as the Make-A-Wish Foundation, that help children with terminal illnesses live a dream. However, that in no way absolves us, as MPs, from our responsibilities to the families, and nor does it absolve the Government or the regional Assemblies from theirs.

Together for Short Lives has also highlighted an issue to me. Will short breaks for children who need palliative care be fairly and sustainably funded from ring-fenced funding allocated to local authorities for short breaks? We look forward to the Minister’s answer, and I trust it will be yes.

Another issue highlighted to me was benefits for families. As soon as the child is taken to the next scene of life—as soon as they leave this life—the parents are left to deal with their grief and their debt. Sometimes, handling the first overrides handling the second. There must be some leeway over cutting off benefits, so that the family has time to realise their financial situation and handle it accordingly. The Minister does not have direct responsibility for the benefits system, but will she say how we can help families get through the switchover at a time when grief is the ultimate driver of where they are? What can we do to ensure that they are entitled to time off and that their benefits are reduced gradually?

[Sarah Champion (Rotherham) (Lab)]

On the point about families, no parents separated as a result of the death of their child in the four years I was at Bluebell Wood, whereas the average in the country is 50%. Hospices are also very good at helping families to secure benefits and housing and to deal with their grief. The hospices therefore give holistic care.

[Jim Shannon]

I thank the hon. Lady for contributing her personal knowledge on that matter. I ask the Minister to tell us how the Government will improve support for the families of children with life-threatening or life-limiting diseases who die, to ensure that family members are entitled to time off and to have their benefits reduced gradually.

To conclude, a child’s illness is the most stressful thing a parent can face. We are failing the family and, by extension, the child if there is a lack of support. That can and, indeed, must change. I ask the Minister to outline what will be done to bring about the changes the hon. Member for Pudsey and others have outlined. We cannot heal these children—I wish we had that talent, but we do not, as much as we might want it—but we can make the journey easier. When will we start to deliver the extra, full care that is so needed?

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.

--- Later in debate ---

[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.

--- Later in debate ---

[Mark Durkan (Foyle) (SDLP)]

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

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

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

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

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

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

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

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

[Jim Shannon]

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

[Mark Durkan]

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

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

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.