Dental Health: Older People

Jim Shannon Excerpts

Wednesday 27th February 2019 Commons Chamber

[Andrew Selous (South West Bedfordshire) (Con)]

This Adjournment debate provides an opportunity to discuss a very important but often overlooked issue, which can have a major impact on the wellbeing of older people: their oral health. Many of us will have older relatives who have reached the stage where they need some extra support. It might be that they live in a residential care home, have a carer who visits them in their home a couple of times a week, or just require a bit of extra help from us personally to stay independent.

However, one issue that often slips under the radar when we think about an older relative’s needs is their oral health; it can often seem like a small issue, but in fact poor oral health can have much wider implications. Having a painful oral health problem can impact on someone’s ability to eat comfortably, to speak and to socialise with confidence, and on the ease with which they can take medication, something which may be a particular issue if an older person is living with other long-term health conditions. Maintaining good oral health can also become much more challenging for older people with reduced dexterity, who may for example have more difficulty with brushing their teeth. Furthermore, for the most vulnerable older people, such as those with dementia, who may have difficulty communicating where they are experiencing pain, an oral health problem can be especially distressing.

Ensuring that older people are supported to maintain good oral health, and have access to dental services when they need them, is therefore very important. However, while data on this issue is limited, the information that we do have suggests that these are areas in which we often fall short.

The Faculty of Dental Surgery of the Royal College of Surgeons published a report on “Improving older people’s oral health” in 2017, which estimated that 1.8 million people aged 65 and over in England, Wales and Northern Ireland could have an urgent dental condition such as dental pain, oral sepsis or extensive untreated decay. Moreover, the Faculty of Dental Surgery also highlighted that this number could increase to 2.7 million by 2040 as a result of several demographic factors, thereby increasing pressure on dental services in the future. As well as the ageing nature of Britain’s population, increasing numbers of people are also retaining their natural teeth into old age; while this is good news, it also means that dental professionals are facing new challenges as they have to provide increasingly complex treatment to teeth that may already have been heavily restored.

Separately, in 2014 Public Health England published the findings of research looking at oral health services for dependent older people in north-west England, which found that access to domiciliary and emergency dental care can often be very challenging for those living in residential care homes or receiving “care in your home” support services. More recently, Public Health England last year published the results of a national oral health survey of dependent older people living in supported housing. This revealed that nearly 70% of respondents had visible plaque and 61% had visible tartar, indicators of poor oral hygiene, and that in some parts of the country, such as County Durham and Ealing, over a quarter of dependent older people would be unable to visit a dentist and so required domiciliary care in their home.

It is difficult to get a complete up-to-date picture of the oral health needs of older people across the country, partly because there has not been an adult dental health survey for 10 years, an issue I will return to later. However, these figures, as well as anecdotal reports from dental professionals working on the frontline, suggest there is a real issue here which potentially impacts on large numbers of often vulnerable older people.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this important issue to the House. As he said, 1.8 million elderly people across the United Kingdom of Great Britain and Northern Ireland have problems, which is shocking. The hon. Gentleman outlined some of the solutions such as extra attention on domiciliary care and in residential homes, and for those at home and dependent on carers. Does he agree that older people’s confidence can also be diminished by not having their teeth correctly done? My mother went this week to have her teeth done; she is 87 years of age and she depends very much on her dentist. She has attended over the years, but many have not, and we need to have that care at all those different levels.

[Andrew Selous]

I am grateful to the hon. Gentleman for giving us his personal family experience of this issue.

There have been some welcome developments over the last few months, including the recently published NHS long-term plan highlighting oral health as one of the priorities for NHS England as it rolls out a new “Enhanced health in care homes” programme across the country. However, I would like to draw the Minister’s attention to five particular areas in which more could usefully be done: training for health and social care professionals; access to dental services; data; regulation; and the social care Green Paper.

First, on training, health and social care professionals regularly do a brilliant job of caring for older people, but as I have mentioned, oral health is one issue that can easily fall between the cracks, particularly if someone is living with a range of other health conditions that also require care and attention. One example of this is oral care plans. Ideally, whenever someone is admitted as a resident to a care home, their oral health needs should be considered as part of their initial health assessment. Those needs should then be reflected in an oral care plan that all their carers are aware of and that will, for example, set out whether the resident needs extra help brushing their teeth.

There is some good guidance from the National Institute for Health and Clinical Excellence, but this can often be overlooked. In Public Health England’s research in north-west England, 57% of residential care home managers said that they did not have an oral care policy, and one in 10 said that an oral health assessment was not undertaken at the start of care provision. Knowing how to provide good oral care is especially important when it comes to supporting those with more complex needs. For example, for those with dementia, electric toothbrushes can sometimes be quite intimidating, and it makes a big difference if a carer knows that they should use a manual toothbrush when helping with tooth brushing. More broadly, if someone who is living with dementia refuses oral care, this can become an obstacle to maintaining good oral health, so it is important that carers understand how to manage these situations, ideally with input from a dental care professional.

Equally, for those with dentures, it is important that training and procedures are in place to minimise the risk of a denture getting lost, even if this is a simple thing such as ensuring that they are kept in a jar by the bedside when not in use. A lost denture takes weeks to replace, and this can be a devastating experience for an older person who relies on them to eat and speak. This is particularly sensitive if someone is coming to the end of their life, when it may not be possible to manufacture a replacement in time as they spend their remaining days with loved ones. An understanding of good denture care is particularly important in these situations.

Improving awareness of oral health among health and care professionals should therefore be a priority, and was a key recommendation in the Faculty of Dental Surgery’s 2017 report. This highlighted schemes such as the Mouth Care Matters programme, in which mouth care leads are recruited to provide oral care training to staff in hospitals and care homes, and I would be interested to know from the Minister whether there were any plans to replicate such initiatives nationwide.

Secondly, ensuring that older people can access dental services when they need them is essential. It is not uncommon for people to think that if someone has no teeth, they cannot be experiencing pain or other oral problems. Sadly, this is not the case and they should still have an oral check-up once a year, not least because the majority of cases of oral cancer occur in people over 50. There are all too many tragic instances of an older person being diagnosed with oral cancer too late—the saddest two words in the English language—simply because they had not seen a dentist in a number of years. Attending a dental appointment can be a particular challenge for those with reduced mobility—for example, if they are unable to climb stairs to reach a dental practice on the first floor—in which case, domiciliary visits are vital. However, evidence suggests that access to domiciliary dental care can be challenging, particularly for those living in care homes or supported housing, and I would appreciate the Minister’s thoughts on how we can address this.

In 2015, Healthwatch Bolton reported that it was easier for a local care home resident to get access to a hairdresser than to a dentist. In 2016, Healthwatch Kent reported that care homes had told it about accessibility problems for wheelchair users within dental practices. In 2016, Healthwatch Lancashire reported that care home staff said:

“The residents don’t get regular checks; they are only seen when there is a problem.”

Healthwatch Derby was concerned about the lack of information for social care providers about how to access dental services for their residents. While the commitment in the NHS long-term plan to

“ensure that individuals are supported to have good oral health”

in care homes under the “Enhanced health in care homes” section is welcome, there is no mention of a similar commitment for older people who use domiciliary care agencies. Those people should not be forgotten, so what do the Government intend to do about that for domiciliary care agency users under the NHS long-term plan?

Thirdly, the intelligence around older people’s oral health is quite limited, making it difficult to build a full picture of the level of need or assess the barriers that older people face in accessing dental care. The most immediate action that could be taken to address that would be for the Government to commission a new adult dental health survey. It is one of the few resources to provide detailed, national-level data on standards of oral health among older people, and it is a key reference for many commissioners, policy makers and dental professionals. The survey has been conducted every 10 years since 1968, but the last edition was published in 2009, so a new one is due. However, the Government have yet to give any indication of when or if a new survey will be taking place, which is causing increasing concern within the dental profession, so an update on that would be most welcome.

There are other steps that would help to improve our understanding of such issues. For example, NHS Digital publishes a regular set of NHS dental statistics for England, which reports on the proportion of children aged zero to 17 who attended an NHS dentist in the preceding 12 months, as well as the proportion of adults aged 18 and over who attended an NHS dentist in the past two years. That data provides a useful measure of access, and expanding the figures to include attendance rates for older people would help us to develop a clearer picture of whether there are particular groups or areas where access to an NHS dentist is a problem.

[Jim Shannon]

Many elderly people are independent and proud, and one of the things that puts them off attending the dentist—I see this in my constituency—is that they think they have to pay for the treatment, but they do not. Perhaps we need to put out a reminder about that.

[Andrew Selous]

I am grateful to the hon. Gentleman for putting that on the record.

Fourthly, in addition to health services, care home providers and dental professionals, regulators can play an essential role by monitoring standards of oral care and driving improvements. The Care Quality Commission in England does not explicitly look at oral health during its inspections of hospitals and care homes, although I understand that it is doing a lot of work behind the scenes to try and push that on to the agenda for care providers, which is obviously welcome. Health and care regulators in other parts of the UK can also make a valuable contribution to ensuring that the importance of oral health is recognised by those that they inspect.

Lastly, I continue to look forward to the publication of the Government’s long-awaited social care Green Paper. Given the importance of oral health to our wider health and wellbeing, an all-encompassing model of care for older people must include dental services, so it will be important that the Green Paper clearly sets out how social care and dental services can work together in the future and what more can be done to ensure that older people have access to dental services when they need them. As I have mentioned, one of the most valuable things we can do to improve older people’s oral health is to ensure that it is not overlooked amid the many other issues that we are dealing with, and I hope that the Government will show leadership on that in the Green Paper.

Oral health can sometimes seem like a small issue, but it has a significant impact on quality of life. The Minister will be aware that we have spoken a lot in recent years about the need to improve children’s oral health, and quite rightly so, but it is also essential that we do not take our eye off the other groups who need support. For an older person who is in pain because of an oral health problem, finding it difficult to eat or speak, or who may be distressed at the loss of a denture that will take weeks to replace, such issues are very real. We can all contribute to addressing them, including Members who care for older relatives in our everyday lives. Indeed, the Faculty of Dental Surgery published some useful advice over Christmas about using visits to older relatives as an opportunity to check their oral health and for how to spot the signs that they might have an oral health problem. That is something that Members could do over Easter when visiting elderly relatives, and we could encourage our constituents to do the same. However, I hope that the Minister will recognise that Government also have an important role to play and will look carefully at what can be done to help improve oral care for our older people.

Safeguarding Vulnerable Adults: Care Homes

Jim Shannon Excerpts

Tuesday 26th February 2019 Commons Chamber

[Dr Rosena Allin-Khan (Tooting) (Lab)]

Thank you for calling me, Mr Deputy Speaker, and thank you for being in the Chair for my first Adjournment debate, which concerns such an important matter.

The UK has a world-class national health service, full of the most fantastic doctors, nurses and support staff. It is a testament to our fantastic NHS that, for decades, we have generally seen life expectancy increase across the country. With increasing life expectancy, however, we have seen a growth in degenerative diseases such as dementia. For families living with a relative with dementia, it is an incredibly difficult experience to see a parent, for instance, lose the ability to talk and forget the essence of who they are. You never forget the first time that they look straight through you, having no idea who you are. I am sure that the Minister will extend her sympathies to the families across the country who live with those circumstances day in, day out.

Many families are increasingly reliant on extra care facilities and nursing homes to manage the healthcare needs of their elderly and vulnerable relatives. They will therefore experience the heart-wrenching feeling of visiting dozens of care facilities and wondering if their loved one will be happy and safe there—will the care be good enough? Sadly, my family and I have found out what happens when the answers to these questions is no. While the majority of those working in the care sector are wonderful and deserve medals for the incredible service they provide, there are, as in any industry, those who are not, and who, sadly, prey on the vulnerable.

I am going to now share something that is not at all easy to talk about. Minister, there are some phone calls you never wish to receive, and I can say that one of them is the hushed phone call from a carer who knows your family, who tells you that as a matter of urgency you need to come to the care facility and check on your loved one because they have been hurt. Nothing prepares you for arriving to find your loved one with black eyes, bruises, cuts and blood on their face. And I can tell you, Mr Speaker, that nothing prepares you for discovering that these injuries in fact happened three days previously and nobody called you, no one alerted you, nobody called an ambulance despite the fact that somebody had a head injury, was on blood thinners and is elderly, and with not a single person—not one—having any answers as to how this may have happened or any proof at all as to how this occurred.

My father has dementia. It started very young and affects a part of his brain that is involved with speech. He is fully aware of everything and even has memory, but his days as a university lecturer would be hard to imagine now were you to meet him, as not only does he not speak, but he can only sing in his mother tongue—which I have never heard him even speak in my lifetime. This makes him extremely vulnerable as he is unable to communicate with those who do not know him. As his children, however, my brother and I can understand his body language and his emotions; we know when he is happy, we know when he is sad, and unfortunately we now know what his demeanour is when he is deeply, deeply frightened.

He was found extremely distressed by a carer covered in bloody injuries which would have caused a great deal of blood loss wherever they had taken place. To our horror we were told that he had not left the building overnight, there was no evidence of him having fallen and no other resident had any evidence of injury. Quite unexpectedly, the centre manager suddenly left and not a single person had any excuse for what had happened or why we were not called. Three days—three days—it took for us to receive a phone call, which came in the manner of a hushed call from a carer who was leaving the very next day. She said she was entirely aware that we had not been told and deeply thought that we should know.

As any family would, we complained immediately to Wandsworth Council, which contracts out the care to London Care, which manages Ensham House, which is owned and run by Optivo. I am sad to say that there our nightmare began, and that nightmare is the reason for this debate, for if two young professionals can endure what happened in the following months in pursuit of answers I fear deeply for the elderly in our community, such as the 80-year-old woman who herself is frail, who is caring for her husband with dementia, and who is too fearful to speak out for fear of going through what I am about to describe.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter to the Chamber. She and I spoke about it last night, so I had a bit of an idea of what the issues were going to be. I commend her for bringing us her personal story and this exposé of what has happened to her family. Does she agree that the ability of former owners and management of care homes that have received bad ratings simply to operate elsewhere under a new name is not conducive to openness and transparency, and that consideration must be given to introducing further and better regulation of the staff, management and ownership of these homes, which house some of the most vulnerable people in the UK? Unfortunately, we have had similar circumstances in Northern Ireland, and they are heartbreaking for the families. I understand exactly what the hon. Lady is saying.

[Dr Allin-Khan]

I thank the hon. Gentleman for his intervention, and I entirely agree with him. This debate is about safeguarding all our vulnerable adults, including his constituents and all the people up and down the country who want and deserve the very best for their families.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 19th February 2019 Commons Chamber

[Caroline Dinenage]

My hon. Friend is absolutely right to raise this. When children’s hospices expand and include facilities for young adults, it can make such an immeasurable difference in their local area. In my area, the Naomi House children’s hospice has opened Jacksplace, which has been such a valuable resource. Hospices should be incredibly celebrated for all such facilities they offer.

[Jim Shannon (Strangford) (DUP)]

Will the Minister take this opportunity to guarantee that the £11 million children’s hospice grant will be protected for children’s hospices, and indeed further increased as a result of the long-term plan to reflect the growing demand and the complexity of care provided by these lifetime services?

[Caroline Dinenage]

Yes. I think this is a really strong signal to clinical commissioning groups about how the NHS values the services provided by children’s hospices—not just end-of-life and palliative care, as I say, but the other respite and outreach services they provide. That is why giving them access to up to £25 million will make an immeasurable difference.

St Helier and St George’s Hospitals

Jim Shannon Excerpts

Tuesday 19th February 2019 Commons Chamber

[Siobhain McDonagh]

My recollection of that particular consultation was that that was really the scorched earth strategy of deciding that St Helier and Epsom were going to close and St George’s would take the strain. I thank God that that never happened, because we could be in an extraordinarily difficult position had it ever happened.

I might sound cynical when I talk about the NHS and its bias against my constituency and against services being at St Helier Hospital, but I have been here several times before. A freedom of information request revealed that those running the programme only distributed consultation documents to targeted areas around their preferred site and to just a handful of roads in my constituency. But my constituents care passionately about their local health services and will not be ignored, and 6,000 local residents responded to the programme by calling for St Helier to retain all its services on its current site.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for giving way. I sought her permission to intervene beforehand because I am always very interested in health issues, and I am here to support her as well. Centralising the health service means that the ill and the vulnerable and pregnant women are expected to travel for miles to get medical assistance. That is totally absurd. Surely the health of the patient must always be put first and foremost.

[Siobhain McDonagh]

I agree with the hon. Gentleman, but it is about not just distance travelled but who is travelling that distance: do they have access to a car, or do they have public transport? The NHS constitution requires that equalities legislation is taken into account, particularly looking at disadvantaged people who are in poor health and how they access services, because they access services differently.

As I said, my constituents care passionately about local health services, and when they responded to the consultation 6,000 of them sent in cards explaining how they felt and saying that they wanted St Helier to retain all its services on its current site. Can you imagine the anger when I found out that their responses had been discounted by the programme? Why? Because they were not on the official documentation—the same documentation that had been disseminated in those targeted letterboxes far away from my constituency.

To the public, the trust portrayed a neutral stance whereby a suitable site across south-west London would be selected for their acute services. To the stakeholders in Belmont, it confessed its desire to move the services to their wealthy area, and to mine, it pretended that the consultation would genuinely seek the views of the public. But as my mum always says, much gets more. I would like to put on record that while I fundamentally disagree with the desire to take services away from my constituents, I do recognise Mr Elkeles’ hard work and dedication in leading St Helier Hospital.

We now fast-forward to the present day and the latest brand, “Improving Healthcare Together 2020-2030”, a programme built upon the unstable and unscrupulous foundation of its predecessors and that once again considers the pros and cons of moving St Helier Hospital’s acute services 7 miles west to Epsom or south to leafy Belmont in Sutton. The programme was launched last summer—they always choose the summer—undertaking an initial public engagement that is expected to transition to a public consultation this coming summer. But just 837 people responded to the public engagement, and that is including hundreds of NHS staff and 169 comments on Twitter or Facebook. That is an utterly abysmal response considering the £2.2 million of taxpayers’ money squandered on the programme already. Does the Minister agree that this is a complete misuse of taxpayer funds at a time when our NHS is under such overwhelming pressure?

This is about more than just the future of St Helier Hospital. My constituents tell me that if St Helier Hospital were to lose its acute services, they would turn not to Epsom or Sutton but east to Croydon University Hospital or north to St George’s. That is a completely terrifying prospect. Before Christmas, my constituent, Marian, was left queueing outside St George’s Hospital with her left leg badly infected, because the A&E was full. And that was the calm before the storm, with St George’s A&E facing its busiest ever week just a fortnight ago. We all remember the winter crisis last year, but the first full week of February this year was 16% higher than last year’s equivalent, with a simply staggering 600-plus visits every single day. This is a hospital that already relies on St Helier as its safety valve. The maternity unit at St George’s had to close temporarily in 2014 and 2015, directing women who were already in labour to St Helier Hospital.

That is why a letter sent in November from the chair of the St George’s trust to those running the programme is completely astonishing. In the letter, the chair expresses her concern that

“there is no formal requirement to take account of the impact on other providers”

when deciding where to relocate acute health services across south-west London. It is hard to put into words just how dangerous that disregard is. I should like to pause briefly to thank the chief executive of St George’s Hospital, Jacqueline Totterdell, for her hard work and tenacity in steering one of London’s largest hospitals at a time of such difficulty.

St George’s is a hospital already under immense pressure. The plumbing, ventilation and drainage facilities are at breaking point, leading to a bid for £34 million of emergency capital from the Treasury. Does the Minister agree that a recent outflow of sewage in the hospital A&E is a clear sign that such emergency funding is justified and, more importantly, urgent? How busy does she think the same A&E would be if the local NHS were to get its way and move St Helier’s major A&E to wealthy, leafy Belmont? Will she step in today and require any proposal to reconfigure health services to wholeheartedly take into account the impact that such a decision would have on all other nearby health providers?

Merton Council recognises the devastating impact that these proposals could have, and I would like to put on record my thanks to leader of Merton Council, Stephen Alambritis, the cabinet member for social care, Councillor Tobin Byers, and the director of community and housing, Ms Hannah Doody, for their unflinching support. It is so disappointing that those at Sutton Council can stand so idly by.

By law, when deciding where acute services should be based across a catchment area of this size, it is fundamental that the level of deprivation and local health needs are accurately understood and thoroughly assessed. So I read from cover to cover the deprivation and equality analysis produced by a range of external consultancy services as part of their £1.5 million programme fee. At a time when the NHS is so strapped for cash, it is extraordinary that my local NHS seems to have carte blanche to employ so many consultants on such extraordinary rates. But even I was absolutely astounded by the monumental gaps in the analysis that these consultants have delivered.

In the pieces of analysis on deprivation and equality, areas that rely on St Helier Hospital are either absent from the documents or actively described as falling outside the catchment area. Take Pollards Hill in my constituency, an area that would be considered deprived in comparison with much of Sutton or Epsom. Wide Way Medical Centre is the largest GP surgery there, and it directs 34% of its patients to St Helier Hospital, but Pollards Hill is deemed to be outside St Helier’s catchment area. Why does this matter? Because if areas that rely on St Helier Hospital are not even considered in the analysis, how can the potential impact of moving acute services from the hospital be adequately assessed? Pollard’s Hill is not alone. The report does not mention Lavender Fields despite almost a fifth of Colliers Wood surgery patients and Mitcham family practice patients being directed or referred to St Helier from the ward.

I urgently brought the gaps in the analysis to the attention of those operating the programme and Jane Cummings, the NHS’s chief nursing officer. I was pleased that everyone agreed that such significant analysis shortfalls would be addressed and rectified.

NHS Menopause Services

Jim Shannon Excerpts

Wednesday 13th February 2019 Commons Chamber

[Rachel Maclean]

I thank my hon. Friend so much, both for his work locally and for supporting me in this work in the Chamber and the House. He is an absolutely fantastic campaigner for the menopause and for women.

Psychologically, none of us likes to be reminded that we are growing old. For women, however, the menopause provides irrefutable evidence that our biological clock has ticked. While men can, and do, continue to reproduce into their old age, we cannot. With that loss, we face a grieving process. Our species has evolved to reproduce itself, and women’s bodies have evolved to carry out childbirth and child-rearing. Aeons of our cultural norms have been built upon that basic and irrefutable fact. Despite advances in all areas of medicine, I do not see men being able to conceive children or breastfeed any time soon, so the loss of those capabilities comes weighted with deep-seated and unexpected emotions. At the same time that we are attempting to grapple with those emotions, we find ourselves beset with a huge laundry list of symptoms and facing at best, indifference and ignorance, and at worst, downright hostility, mockery and discrimination while we attempt to help ourselves.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on securing the debate. Like the hon. Member for Walsall North (Eddie Hughes), I have much interest in this, not only because it involves health issues that I am responsible for, but because sometimes things are pretty close to home. Does the hon. Lady not agree that the support that is needed for women who are going through tremendous changes in their bodies is not readily and sustainably available at GP surgeries, and that funding needs to be allocated to support groups, like the ones that the hon. Lady and the hon. Gentleman referred to, to ensure that the mental and physical health of ladies going through the menopause is readily available? That is very important.

--- Later in debate ---

[Rachel Maclean]

I thank my hon. Friend again for that really good point. In fact, menopausal women are the fastest-growing demographic in the workforce. It is vital, therefore, that employers step up and produce menopause policies to help women going through this process.

There are many ways in which society can better support menopausal women, but we must look also for ways in which menopausal women can better help themselves. Of course, education can help. We can raise awareness of these issues in numerous ways—for example, through sex and relationships education in schools. We teach young girls about reproduction and periods, about contraception and relationships, and we ought at that stage to educate them about what happens in the menopause.

Employers also have an important part to play and can introduce supportive policies in the workplace, and I am pleased that many large employers are starting to lead the way in this respect. The best known local employer I have worked with is the West Midlands police, who are introducing creative and groundbreaking policies. Having spoken to women who have worked with them to introduce those policies, I know they faced considerable barriers when they first started to bring these conversations into the workplace—this very traditional, male-dominated environment—and yet they persisted, and now they find that their events and support groups are oversubscribed and that men really want to help and get involved to support their female colleagues.

[Jim Shannon]

I mentioned in my earlier intervention the importance of access to GP surgeries. Every lady who has this problem goes to her doctor. That is a fact. At that stage, there is an opportunity to address the issue. I hope that the Minister will respond to this point—she always does respond very positively—because there needs to be some extra assistance in GP surgeries to help the ladies whenever they present with these problems.

--- Later in debate ---

[The Minister for Care (Caroline Dinenage)]

I congratulate my hon. Friend the Member for Redditch (Rachel Maclean) on securing this debate on health services and the menopause, and I want to start by celebrating the fact that we are discussing this subject. For too long the things that only affect women have been taboo; they have been brushed under the carpet—they have not been discussed in this place. One of the most magnificent of the many great side-effects of having a more gender-equal place is that we begin to discuss these subjects and those last taboos get addressed properly. It is wonderful to hear and see the men present in this Chamber who also care passionately about this subject; that must be celebrated too.

My hon. Friend has been a passionate and highly effective campaigner for improved awareness of the menopause and better support for women who are dealing with some of the difficult symptoms. I am very grateful and supportive of her work on this issue; in my eyes she is an absolute hero. I believe it is vital that we provide effective support and treatment for women with menopausal symptoms. It is of the utmost importance that we continue to work to improve that and to tackle the misconceptions attached to the menopause.

My hon. Friend raised the issue of HRT and expressed her concern that some GPs are not prescribing or recommending it to women who need it. No two menopauses are exactly alike and GPs play an important role in ensuring patients are given treatment that is appropriate to them. It is worth bearing in mind that the menopause is a natural stage in a woman’s life, and that many women will experience the menopause without troublesome symptoms or the need for treatment. Where symptoms do arise, HRT can be very effective in relieving them, and GPs should give menopausal women information about HRT as a treatment option, highlighting its risks, if they see that there are any, and its benefits. However, every patient is different and HRT might not be suitable for everyone. It is not the only treatment for menopausal symptoms, and GPs should also, where appropriate, talk women through all the non-hormonal and non-pharmaceutical treatments that are available.

My hon. Friend is right to say that there has been real confusion in the past about the safety of HRT. Concerns were raised in the early 2000s, as she mentioned, when a study said it was associated with an increased risk of breast cancer and heart disease. As a result, many women were advised by their doctors to come off HRT and the number of HRT users in the UK fell significantly. I cannot stress strongly enough that, as my hon. Friend has noted, the evidence base has since become clearer and the NICE guidance on the menopause is clear that HRT is a perfectly safe treatment in the majority of cases, and in most cases there is a far lower health risk in taking HRT than in drinking a couple of glasses of wine every day or in obesity, as my hon. Friend said.

The NICE guidance on the menopause also provides GPs with advice on how to recognise symptoms of the menopause. This guidance has helped prevent misdiagnosis, and my hon. Friend spoke very powerfully about how sometimes menopause can be mistaken for depression, which is incredibly worrying. Improving treatment of the symptoms of the menopause is also important.

We are also taking a range of other actions to improve support for women experiencing menopausal symptoms. This includes the work of the royal colleges, which of course play an important role in the education, training and professional development of healthcare professionals who treat women with menopausal symptoms. The Royal College of General Practitioners has produced a toolkit that includes learning resources for GPs on diagnosis and management of symptoms of the menopause. In addition, the Royal College of Nursing, in collaboration with the British Menopause Society, has produced a guide providing information for nurses who wish to become specialists in the menopause. That is very important, too. The Royal College is also aiming to develop a GP specialty that focuses on women’s health, which will be warmly welcomed.

Correct diagnosis and treatment of symptoms of the menopause are important, but we also have to focus on improving wider awareness of the menopause. An important part of this will be to have more open conversations around the menopause, so that we can start tackling the taboos that are attached to it. Taking this wider, bigger-picture approach is vital, given the huge impact that the menopause can have on all parts of a woman’s life.

In raising awareness and tackling taboos, we need to ensure that we reach out to all demographics, including boys and men. I cannot help thinking that if a similar hormonal transition affected men for an average of four years in the second half of their life, we would never hear the end of it—[Interruption.] Present company excepted, of course. As it is, the menopause has become something of a taboo, and we have to get over that. That is why it is so incredibly faith-restoring to see these incredibly liberated and forward-thinking gentlemen in the Chamber tonight, including my hon. Friend the Member for Walsall North (Eddie Hughes), who has talked about the menopause café that he runs. He should be championed for that. I was also pleased to see that the debate that was held on world menopause day last October was called by a male MP. These men are champions, in my eyes, and they deserve to be celebrated.

As my hon. Friend the Member for Redditch mentioned, education is absolutely key to promoting awareness and understanding of the menopause. The Government are making relationships education compulsory in primary schools and relationships and sex education compulsory in secondary schools. The underpinning focus in these subjects is to equip young people to develop positive attitudes to health, relationships and wellbeing. Schools will then have a really good opportunity to improve pupils’ understanding and awareness of the menopause.

Hon. Members will be aware that women represent 51% of the UK population and 44% of our workforce. They play a vital role in the nation’s health, but they do not always receive the most timely or appropriate healthcare. My hon. Friend mentioned the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Thurrock (Jackie Doyle-Price), who is the Minister with responsibility for mental health, inequalities, and suicide prevention. She is doing sterling work on this issue, and she has set up a women’s health taskforce. This taskforce will work to ensure that women receive timely and appropriate care in relation to a whole range of issues, and as part of its upcoming early work, it will consider the menopause.

This work will be informed by a collaborative discussion that will be led by the brilliant chief medical officer and include the Royal College of Obstetricians and Gynaecologists, a number of academics who work in menopause research and GPs who specialise in the menopause. These discussions will feed into the taskforce’s wider objectives: to empower women to speak more confidently; to raise awareness and break taboos around women’s health problems; and to improve the access, quality and experience of care for women. I hope that that will help to address some of the important issues that my hon. Friend has raised today, and I am sure that my ministerial colleagues in the Department of Health and Social Care will be absolutely delighted to work closely with her on the taskforce’s developing work around the menopause, because she has done such sterling work in this area so far.

We need to ensure that workplaces provide the necessary and appropriate support for women. A recent study found that 41% of women aged 50 to 60 said that the menopause had affected their job, but that 70% did not tell their employer about their symptoms. This demonstrates the work that needs to be done to move beyond shame and silence to an open conversation about the menopause, because half the population will go through it. Giving better support to those women in work is not only right but fundamentally good for the economy. Women over 50 are now one of the fastest growing groups of employees. They have invaluable skills and experience, which means that they are incredibly difficult to replace. We should be looking to support them to stay in work whenever we can.

I am particularly proud to be responding to this debate tonight not only because I am hurtling very fast towards the menopause myself but because, when I was Minister for Women and Equalities, I chaired the very first parliamentary roundtable on awareness and taboos around the menopause in the workplace. This was the first ever meeting in Parliament that brought together important stakeholders and interested parties to discuss this important issue. We heard some incredible evidence. I remember one lady telling us that she had had to leave her workplace because all she wanted was a desktop fan to help her deal with the hot flushes, but the company would not let her have one and so lost an employee with incredible experience and huge amounts of skill, which just makes no sense at all.

[Jim Shannon]

I thank the Minister for her positive response. There is an old proverb that a problem shared is a problem halved, and the Minister has clearly indicated a method of doing that. I encourage her to get that message out across GP surgeries, education and all the relevant bodies.

[Caroline Dinenage]

The hon. Gentleman is an enlightened man. The work that we did at the very first roundtable led to an evidence review that was published in 2017, which talked about raising awareness and about the effects on women’s economic participation. The review led to the Women’s Business Council developing a toolkit to enable employers to support their employees more effectively, and I think we can all agree that that can be nothing but a good thing.

Mental Capacity (Amendment) Bill [Lords]

Jim Shannon Excerpts

3rd reading: House of Commons & Report stage: House of Commons
Tuesday 12th February 2019 Commons Chamber

[Caroline Dinenage]

The role of the family is much greater in this amended legislation than it is currently. A number of families have told us through our work on this Bill that they feel very disenfranchised by the current system. For example, in the new system a family member or a loved one can be an approved person.[Official Report, 13 February 2019, Vol. 654, c. 7MC.] That would be the person’s advocate through the process. That method brings family members and loved ones much closer into the decision-making around this whole system.

[Jim Shannon (Strangford) (DUP)]

I received some correspondence from Age Concern, as the Minister knows. It wanted to raise two specific issues; I spoke to the Minister about this, but I want to raise it again to have it recorded in Hansard. The issues are the definition of the deprivation of liberty, which I understand the Government are including in the Bill, and access to advocacy. I reiterate, too, the point made by the right hon. Member for Wokingham (John Redwood): the importance of having family and loved ones as part of the process. We must not disenfranchise them; if we do that, we are doing this wrong. So will the Minister confirm that those things are in place?

[Caroline Dinenage]

Yes, that definition is included in the Bill, and it is also expected that people will have an advocate. That is an approved person; it can be a family member or loved one or it can be an independent mental capacity advocate, or indeed both if the family do not feel they are fully equipped to be able to support their loved one.

[Jim Shannon]

So the wishes and feelings of the loved ones and their families are at the heart of the Bill?

[Caroline Dinenage]

The wishes and feelings of the vulnerable person are at the centre of the Bill, and the wishes and feelings of their family will definitely be taken into consideration if their family is the approved person. We must always leave a little space in case the person does not want their approved person to be a family member for whatever reason.[Official Report, 13 February 2019, Vol. 654, c. 8MC.] The wishes and feelings of the individual must be at the heart of this, and that was at the heart of the original Mental Capacity Act 2005.

Licensing of Medical Devices

Jim Shannon Excerpts

Tuesday 12th February 2019 Commons Chamber

[Owen Smith]

I am grateful to my right hon. Friend for her kind words. She is completely right to say that there are devices on the market here and across the world that are still causing grave medical problems for patients. The question we have to ask is: how did these things get on to the market in the first place? How have we got so many of these devices that are causing such significant problems? The common problem that unites mesh with all the other device scandals in our country and across the globe is the weakness of the regulatory system in the UK, in the EU and, to a lesser extent, in America, where the pathway for testing approval, marketing and surveillance of such devices just is not good enough.

How does the system work? It will shock people to hear that we do not have a central body that is responsible for checking out, authorising and licensing devices in the same way as for medicines. If a company in the UK wants to create a new prosthetic hip joint, it does so and then it shops around among a group of what are called notified bodies. These are effectively commercial organisations that are in turn licensed by the MHRA to be a body that checks safety and efficacy through the clinical data provided by the companies and then gives them their conformité Européenne—their EU kitemark. Once a company has received that mark, the device can be sold all across the EU.

Companies do not need clinical trial data in order to substantiate their claims that devices are efficacious and safe. Quite often—this is true of a remarkable proportion of the devices on the market—they do not even have to undertake first-hand clinical evaluations themselves and can rely on being follow-on products that go through a regulatory pathway that is termed as being “substantially equivalent” to the products that have gone before. For instance, there are examples of mesh on the market now that are the 61st iteration of an original licensed mesh that is no longer on the market because it was proven to be dangerous. There is no real mandatory post-marketing surveillance of these devices.

Given that the difficulty of randomised control trials versus placebo for a device—someone cannot put a wooden heart into one patient and a pacemaker into another in order to see which one works—means that there will be a degree of risk in testing such things in the real world, one would think that we would have a system that would test how devices are doing in the real world and get companies or the Government to monitor them, but we do not, which is in stark contrast to the regime for medicines. Changes are coming into effect, however. A new medical devices regulation was launched across the EU in 2017 and will come into effect in May 2020. It was introduced with the acknowledgement of many of the problems that I have highlighted.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing this debate on an issue that is important to many of us. With the EU’s new medical device rules coming into place in May 2020, as he says, does he agree that the number of available notified bodies is already diminishing? The Government must be aware of that and must work to find a way to secure acceptance of UK notified bodies as part of any arrangement, allowing for the smooth transition of notified bodies and product certification.

[Owen Smith]

I agree in part with the hon. Gentleman. One thing that I did not say earlier is that there are 50 notified bodies across the EU, so if a company goes with its new artificial hip to one body and says, “Will you approve this for my CE mark, because I would like to sell it in the EU?” and the body says no, because it does not think the data is good enough, all the company has to do is go to the next notified body, and if it says no, the company can go to the one after that, and if the third body says no, the company can go to the fourth one. Neither any of the notified bodies nor the manufacturer are under any obligation to disclose that the device had been turned down earlier. I agree that fewer notified bodies would be a good thing, but there are big questions for us in the UK because we will have no notified bodies once we have left the EU.

There are other problems with the new directive, which is a strengthening of the regulations, but it is not strong enough. For example, it now says that companies should summarise their clinical trials data, that they should take clinical data that is, if possible, sourced from clinical investigations carried out under the responsibility of a sponsor—meaning something more akin to randomised control clinical trials—and that they should ordinarily have a quality management system and a post-market surveillance system that should be proportionate to the risk class of the device in question. However, the point is that none of those things is mandatory.



There is no mandatory requirement to conduct proper trials or to max out the tests that are done. There is no mandatory requirement to publish data. There is no mandatory requirement to publish all data, including negative data. There is nothing to stop the companies continuing to conceal data, or shopping around between different notified bodies, and there is nothing to stop the companies doing the bare minimum on surveying how their product is doing in the marketplace. The directive is a strengthening but, unfortunately, it is not the strengthening we need.

If we leave the EU, the directive will not necessarily apply in all regards in the UK. The Government have tried to respond to the concern voiced by others before me by saying that they will effectively apply the regulation in future, but that would bring difficulties in and of itself. As I said, we would effectively be accepting products that are kitemarked and approved elsewhere in Europe, and not by our own notified bodies, because we will not be part of that system any longer. I assume we will be using the European database on medical devices, which is designed to work right across Europe, but we will not be part of the expert panels that reflect on the findings reviewed through that database.

Crucially, I assume that the MHRA will be filling some of those gaps. It will already have an almighty job on its hands in trying to fill the gap on medicines once we are outwith the purview of the European Medicines Agency. I fear that devices will once again be the Cinderella of the medical game. We did not have regulations for devices at all before 1990, and we may find that we are playing catch up with the European Union in future.

Whichever way Brexit turns out, and in reflecting on the flaws in the regulatory system I have highlighted, I ask the Minister, first, to try to get the MHRA, or whatever replaces our current regulatory pathway, to go back to the first principles of protecting patient safety at all times. There is too much talk in Europe of maintaining our advantage over other markets as an early adopter of innovation. Well, early adoption can go wrong if the innovation has not been adequately tested, and mesh is a great example.

Secondly, will the Minister do what the Royal College of Surgeons has asked her and the Government to do and set up a national registry of all “first implanted into a man or woman” devices—the innovations—so that we can track what happens with those devices, as we should have been able to do with mesh? Thirdly, will the Minister make sure that whatever system we have imposes much more stringent obligations on companies to undertake the most rigorous tests in respect of such medicines? In any new system, we should rule out anything like the substantial equivalence model that has been deployed in Europe for so long. It seems crackers to have a system that is basically a paper-based exercise without any real-world tests.

Lastly, I would like our Government to follow the example of the Australian Government, where the Minister’s counterpart, Greg Hunt, issued a national apology to the many women whose lives have been ruined by the debilitating effect of pelvic mesh implants:

“On behalf of the Australian government I say sorry to all of those women with the historic agony and pain that has come from mesh implantation, which have led to horrific outcomes”.

Our Government should similarly apologise to women damaged by surgical mesh. Irrespective of how Brexit turns out, they should pledge to radically reform the regulatory pathway for this class of medicines in order to make sure that no patients, men or women, suffer, as patients have in the past, as a result of medical devices.

Non-surgical Cosmetic Procedures: Regulation

Jim Shannon Excerpts

Tuesday 12th February 2019 Westminster Hall

[Alberto Costa]

I thank my hon. Friend for that intervention. Yes, that is one of the core issues that I wish to raise today. The mark of a professional in our society is somebody who is regulated, who is trained, qualified and licensed, and who has ongoing regulation and development. However, in addition to that, in the private sector they must carry professional indemnity insurance, so that people do not sue men or women of straw and so that they have someone to sue when things go wrong.

My experience of non-surgical cosmetic procedures does not extend to Instagram celebrities or Kylie Jenner. Instead, I wish to inform you, Mr Hollobone, of the case of my constituent Rachael Knappier. First, I thank Rachael, her mother and her friend, who are all attending this debate here in Parliament. I also thank Rachael for her tremendous bravery and willingness to talk openly about the terrible injury that she sustained as a result of a botched non-surgical cosmetic procedure. I think Rachael has been a role model for hundreds, if not thousands, of people across the country who have read the articles in the British media about her trauma. They responded with sympathy, but most crucially an understanding of her experience, because—sadly—experiences such as Rachael’s are not confined to the few. Many hundreds of our constituents have suffered such botched procedures.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for giving way and I congratulate him on bringing this issue to the House. This debate was supposed to be held a few weeks ago, Mr Hollobone, but unfortunately it did not take place then, so I have looked forward to this opportunity today.

Very recently, I was contacted by one of my local councillors on behalf of a registered nurse in my constituency who is asking for regulation of non-surgical cosmetic services to be made compulsory and not voluntary. Does the hon. Gentleman agree that we must understand the belief of someone who sees the terrible effects of these treatments carried out by those who are not medical professionals, and that we should put legislation in place to address this grave concern? Whenever nurses or my councillors come and tell me their concerns, there is a real need for legislative change.

[Alberto Costa]

I thank the hon. Gentleman for his intervention. I agree that regulation is required and that legislation should underpin that regulation; there should not be voluntary regulation. Indeed, I would go further and say that, although I do not profess to know what type of expertise somebody should have to carry out these procedures, the regulator should identify the training, the expertise and the qualifications required and what products should be permitted in the market.

--- Later in debate ---

[Alberto Costa]

The hon. Lady is exactly spot-on. It is beyond belief that somebody can inject someone else with a foreign substance and have no medical expertise whatsoever. That is the nub of the problem.

We see more and more young people seeking these types of procedures, and at younger ages. It is incumbent on the Government to act swiftly and decisively to ensure that proper regulation and protection are in place for our constituents, of all ages, before the situation spirals out of control.

According to data from Save Face, a Government-approved voluntary register of accredited practitioners, there has been an alarming rise in reports of botched cosmetic procedures in the UK. The number of complaints about unregistered practitioners of treatments such as lip fillers and Botox reached almost 1,000 last year, showing that there is a large gap in safety and proper process that must be bridged.

Further, there is a separate but inextricable link between the rise of non-surgical cosmetic procedures and the pressures that young people in our society feel. Members may have seen Sky News this morning about social media, selfies and changing one’s image. That is clearly a major issue, particularly among the younger generation. Social media also has a responsibility regarding advertisements for non-surgical cosmetic procedures that are particularly targeted at minors. Although it is a person’s prerogative to undertake any treatment they wish, they should be able to do so through the prism of an informed decision, and with the peace of mind that the treatment they receive has been tried, tested and regulated by a professional body.

Colleagues might have seen the news about Superdrug a week or so ago, in which NHS England’s medical director strongly criticised the trusted high street retailer for not conducting “medically responsible” checks before customers receive their treatment. Similarly, NHS England’s chief executive sternly warned ITV about screening advertisements for these types of treatment in breaks during programmes such as “Love Island”, which is hugely popular with young people. Many colleagues will be shocked, as I was, to find that anyone can carry out non-surgical cosmetic procedures, with no regulation or expertise whatsoever.

A multitude of small businesses, and even individuals, spread across Facebook and, especially, Instagram, offer their services to impressionable young people. Many of them have no corporate responsibility or regulation and there are therefore absolutely no safeguards for consumers. Although I appreciate that many colleagues may have never seen an episode of “Love Island”—I confess to being in that category; I do not even have an Instagram account—

[Jim Shannon]

That makes two of us.

[Alberto Costa]

Dreadful, shocking. [Interruption.] Resign? With immediate effect. Members may also inexplicably not even know the different between their Kylie and Kendall Jenners, but there can be no doubt that most of our young constituents do. Those things are staples of the young generation, and are prevalent reminders, and in some cases advocates, of these types of non-surgical cosmetic treatment.

The Times recently conducted an investigation in which an Instagram account was created purporting to be that of a 13-year-old. Almost instantly after the account had followed social media influencers and celebrities, posts promoting such procedures appeared in the app’s “explore” feature. That reveals the shocking ease with which our younger constituents can be exposed to these types of treatment, under the guise of their being the new norm in today’s society.

In addition, young people’s physical access to the treatments is of tremendous concern. Although the law rightly restricts tattooing and the use of sunbeds for those under 18, there is no age-related restriction for either surgical or non-surgical invasive cosmetic procedures. The Nuffield Council on Bioethics recommends that children and young people under the age of 18 should not be able to access cosmetic procedures unless there is a medically relevant reason to do so. With the prevalence and exposure of the procedures specifically aimed at the young and impressionable in our society, action is required to protect children.

Turning to the industry itself, I have repeatedly said that non-health professionals who provide non-surgical cosmetic procedures are not regulated in an appropriate statutory manner. There is, however, an independent voluntary Joint Council for Cosmetic Practitioners, which has launched two new registers, one for practitioners who meet the clinical standards required to provide the treatments and another for accredited education providers. In the absence of an obligatory statutory register, as a minimum there should be clear public information about the need to seek a practitioner who is, at the very least, registered with that independent voluntary regulator. Nevertheless, a voluntary independent register, however laudable, does not go far enough. Dermal lip fillers, as one of the more popular non-surgical cosmetic treatments, are a good case in point regarding the total lack of standards in respect of the administered products.

I am mindful of time, so will make a few closing remarks. It was mentioned that the Keogh review, undertaken by the coalition Government, expressed huge concern that nothing prevented entirely unskilled practitioners from offering invasive treatments using unregulated products. The review stated that

“dermal fillers are a crisis waiting to happen.”

Despite the Minister at the time of the review’s publication advocating that its recommendations be taken forward, sadly this is, apparently, not happening. I therefore ask both the Minister, who I know has been a champion of ensuring appropriate health and safety standards for consumers, and the Government to at least consider setting out a cohesive and comprehensive plan to properly regulate the non-surgical cosmetic industry.

My constituent Rachael has been forthcoming, and willing to discuss her experience, but many hundreds out there have suffered botched treatments and are embarrassed or unable to come forward. As Members of Parliament, we have a duty to our constituents, and indeed to all others who may consider these treatments, to provide public information and to ensure that the procedures are administered by trained, qualified and regulated individuals. We also must ensure that, yes, those individuals are able to work in a thriving and competitive industry, but also that consumers have choice and that professional indemnity insurance is obligatory, so that our constituents are protected when things go wrong and the taxpayer is not burdened through the impact on the NHS.

Orkambi

Jim Shannon Excerpts

Monday 4th February 2019 Commons Chamber

[Bill Wiggin]

I suggest that the hon. Gentleman hears the rest of the speech before he expects to draw any conclusions.

Cystic fibrosis is a life-limiting genetic disorder. Patients with cystic fibrosis experience a build-up of thick mucus in their lungs. This can have a wide range of effects on their respiratory, digestive and reproductive systems. The disease is widespread in the UK. One person in 25 carries the faulty cystic fibrosis gene. Statistically, that is 26 Members of this House whose future generations could be affected by this cruel disease.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this debate to the House; there is such a good crowd in the Chamber tonight due to the importance of the issue. I also thank him for being an advocate of Orkambi not because I have had any dealings with the company, but because I have many constituents who are affected. One grandmother in particular has asked me to make a plea because the life not only of their grandchild, but the lives of the whole family, have been turned around by this drug. I want this drug to be available for families throughout Northern Ireland and the whole United Kingdom. Does he agree that this Crown licence is a way to get around the stalemate that is preventing CF sufferers throughout the United Kingdom of Great Britain and Northern Ireland from accessing this drug, which is proven to deliver tremendous improvement in quality of life?

[Bill Wiggin]

I am sure that the hon. Gentleman’s constituents will be grateful to him for raising the issue in the House this evening.

Every week, five babies are born with the disease, according to Great Ormond Street Hospital, and every week two young people die as a result of cystic fibrosis. The disease accounts for 9,500 hospital admissions and over 100,000 hospital bed days a year. There are two main ways to treat cystic fibrosis: conventional treatments target the symptoms, and precision medicines such as Orkambi tackle the cause of the condition. For conventional treatment on the NHS, the average waiting time to be admitted to hospital is 45 days.

Orkambi presents a relatively safer, more effective and clinically meaningful alternative. In treating the root causes, it reduces lung damage and cystic fibrosis-related diabetes, and improves pancreatic function. The drug has been approved by the European Medical Association, and the Food and Drug Administration in the United States. It avoids the high risk associated with organ transplants.

Orkambi treats the F508del mutation, which around 50% of people with CF in the UK carry. Essentially, the drug permits more chloride ions to pass into and out of the cells. This helps to keep a balance of salt and water in affected organs. Ivacaftor is one of the active substances in Orkambi. It increases the activity of the defective cystic fibrosis transmembrane conductance regulator protein, thereby making the mucus less thick. Decline in lung function is the most common cause of death for people with cystic fibrosis and, although not a cure, Orkambi has been found to slow the decline in lung function by 42% and reduce hospitalisations by 61%.

World Cancer Day

Jim Shannon Excerpts

Wednesday 30th January 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

First, I congratulate the hon. Member for Berwickshire, Roxburgh and Selkirk (John Lamont) on securing the debate and giving us all an opportunity to participate. This issue is very close to my heart. My father battled and had the victory over cancer three times during his lifetime, but watching him and my mother go through it was incredibly tough. My dad survived those three times due to the clinical and surgical skills of the doctor, the care of the nurses, who were excellent, and, as a man of faith, the prayers of God’s people. That is the experience of so many people throughout my constituency and throughout the UK.

Cancer is no man’s respecter and the reality is that in our lifetime one out of two of us in this place will have an experience of it. I was in touch with CLIC Sargent—indeed, it was in touch with all of us. It is a wonderful charity that is very active in my constituency and I am happy to support it. It gave me the following figures, which are simply heartbreaking. Some 4,450 children and young people under 25 are diagnosed with cancer every year. That is 12 children and young people every day. Those are extremely worrying figures. Around four in five children and young people survive cancer for five years or more, yet cancer remains the disease that is the biggest killer of children and young people in the UK aged from one to 24 years old.

Cancer impacts on young people and parents’ mental health. Undergoing cancer treatment is challenging, isolating and deeply personal. Young people’s ability to cope is often seriously affected by the emotional pressures and the mental health impact of a diagnosis and months of treatment. CLIC Sargent’s 2017 “Hidden costs” report found that 79% of young people felt cancer had a serious impact on their emotional wellbeing. During their cancer treatment, 70% of young people experience depression, 83% experience loneliness, 90% experience anxiety and 42% experience panic attacks. More than half of parents—63%—say they experience depression during their child’s treatment. It affects not only the child, but the family and the parents. More than a third of parents experience panic attacks and 84% experience loneliness.

I stand with CLIC Sargent, Macmillan, Marie Curie and all the other charities that are too numerous to mention, but which do great work. They are asking the Government to improve support for young cancer patients and their parents by making changes to the way benefits such as PIPs and DLA are accessed. The stories that I have heard from others in the Chamber, in my constituency and elsewhere, and in the news are disgraceful. I know that the Minister is not responsible for the DWP, but he does, I believe, have compassion and a heart, and hopefully he will pass these issues on to the Minister who is responsible. I have written to that Minister about these matters as well.

Not only do I need to see change; the system needs to see change. As treatment starts immediately and often takes place a long way from home, the costs start building up from day one. There must be a review of access to DLA and personal independence payments for young cancer patients, so that they can get their financial support backdated from the day of diagnosis. It is so important to have that financial support in place, because that worries the parents, the families, and everyone else at a time when they need that support most desperately.

Following the Prime Minister’s announcement in April 2018 of the establishment of a children’s funeral fund in England, I ask the Minister to further clarify when that fund will be introduced. Again, that is not his responsibility, but perhaps he can ask that question of the Minister who is responsible. Furthermore, will the Minister provide an update on what the Government are doing to ensure that parental bereavement leave, which would give all employed parents a right to two weeks’ leave if they lose a child, is ready to be introduced in 2020?

I will quickly mention the importance of partnerships between universities and businesses to develop cures for cancer and other diseases: Queen’s University Belfast does that extremely well, and that partnership works. I will also mention that I had the opportunity to speak with Bowel Cancer UK the other day. Every year in Northern Ireland, 1,100 people are diagnosed with bowel cancer and 400 people die. By 2035, 332,000 more lives could be lost to that disease in the UK. There are some things that Bowel Cancer UK has asked for, but I will not go into those in the time I have left.

These topics are heartbreaking, but they need to be addressed. I ask the Minister for a response, either in this place or in writing, on how changes are going to be made to support the families of children with cancer throughout the UK. How can we make these impossible, dark, soul-wrenching things a little bit better? We can make them better by using common sense, and using funding in appropriate ways to provide support as and when it is needed, lightening the load in the only way that we can. That will not take away the pain of watching a child go through this, or losing a child, but it will take away pressure that should not exist in the first place.