Coronavirus

Ben Lake Excerpts

Wednesday 17th June 2020 Commons Chamber

[Matt Hancock]

I agree 100%. The need to level up is no greater than in health inequalities. The differences in life expectancy between different parts of our country is stark and has been laid bare further by this crisis. The crisis has been like sheet lightning that has laid a light on some of the health inequalities that were there before but which must with increased urgency be addressed. That is one of the big learnings from this crisis. It is something we all knew before but which we must redouble our efforts to resolve after this crisis is over.

[Ben Lake (Ceredigion) (PC)]

Last Friday, it was confirmed that the UK was eligible to participate in a European scheme to place advanced orders for vaccines currently in development and to ensure priority access to any successful vaccine. What is the Secretary of State’s assessment of the potential merits of UK participation in such a scheme?

[Matt Hancock]

We are having such discussions—I have had conversations with my German, French and Italian counterparts on exactly this subject—but the most important thing is that we will not let those discussions get in the way of the much more advanced discussions we are having directly with the vaccine producers to make sure that even if the two great British vaccine hopes do not come off, or if one from somewhere else in the world comes off first, we have access to a vaccine for citizens across the UK.

Social Distancing: 2 Metre Rule

Ben Lake Excerpts

Monday 15th June 2020 Commons Chamber

[Edward Argar]

My hon. Friend is right to say that this is about conducting this review so that we have the best scientific and economic evidence, and so that we can make the right decision at the right time, when it is safe to do so.

[Ben Lake (Ceredigion) (PC)]

Whether the 2 metre rule is maintained or shortened, as the hon. Member for Cardiff West (Kevin Brennan) mentioned, many businesses will find it will still not be viable to reopen. Given that, will the Government consider extending financial support to businesses that have to remain closed because social distancing measures would make reopening not financially viable?

[Edward Argar]

As the hon. Gentleman will have heard the Chancellor say on many occasions, we continue to keep all measures to support individuals and businesses under constant review, and I know that the Chancellor will have heard the point he makes.

Covid-19 Response

Ben Lake Excerpts

Monday 18th May 2020 Commons Chamber

[Matt Hancock]

My hon. Friend should be proud to represent Stoke Mandeville hospital and Stoke Mandeville hospital radio. He is right: hospital radio is always important, but at times like this, when visitors have not been able to go into hospitals, it is even more important. I am pleased that he raised it.

[Ben Lake (Ceredigion) (PC) [V]]

The Secretary of State has mentioned that both the R rate and the level of new cases are important factors in determining the Government’s decision making, but will he clarify whether the way in which those factors differ throughout the UK will be considered in future planning, including in respect of financial-assistance programmes?

[Matt Hancock]

Yes.

Covid-19 Update

Ben Lake Excerpts

Tuesday 5th May 2020 Commons Chamber

[Ben Lake (Ceredigion) (PC) [V]]

Widespread testing and contact tracing will be essential to contain future outbreaks, and such a system will need to be operational before we move from full lockdown. In addition to the Isle of Wight trial, will the Secretary of State consider the work being undertaken by Ceredigion County Council, in collaboration with Hywel Dda University Health Board and Aberystwyth University, on a community testing and contact tracing system that could offer local solutions and expertise to complement any UK-wide infrastructure?

[Matt Hancock]

I am happy to look at any examples that are effective in reducing the spread of the virus. Of course, parts of this are devolved, and parts of it are the UK Government’s responsibility. We have made available all the tools that we are developing at a UK level for devolved Governments to pick up. For instance, we have published the underlying source code behind the apps, so that people can have a look at it and suggest improvements or take it and use it in their own way.

Coronavirus Bill

Ben Lake Excerpts

2nd reading & 2nd reading: House of Commons
Monday 23rd March 2020 Commons Chamber

[Matt Hancock]

I will look into those specific points. There are parts of the Bill that would help to tackle the problem my hon. Friend describes if it is appropriate to do so, but I think it is better if I get some medical advice and then get back to him.

The third part of the Bill contains measures to slow the spread of the virus. As the disease accelerates, our goal is to protect life, to protect the vulnerable and to protect the NHS by flattening the curve and minimising unnecessary social contact. This is a national effort, and everyone has their part to play—self-isolating if someone or anyone in their house has symptoms, working from home wherever possible, avoiding social gatherings and, of course, regularly washing your hands.

The Bill provides for us to go further: it gives us stronger powers to restrict or prohibit events and public gatherings and, where necessary, to shut down premises; and it gives the police and Border Force the power to isolate a person who is or may be infectious. This part of the Bill also allows us to close educational settings or childcare providers, and to postpone for one year elections that were due to take place in England in May. These are not measures anyone would want to take, but they are absolutely necessary in this crisis.

[Ben Lake (Ceredigion) (PC)]

The Secretary of State will be aware that over the weekend thousands of people made their way to holiday areas and rural areas such as mine. Do the powers in schedule 21 allow Ministers to require people, in circumstances where local health boards are under increased pressure, to remain in their primary residences?

Covid-19

Ben Lake Excerpts

Monday 16th March 2020 Commons Chamber

[Matt Hancock]

Yes, that is very important. I was in Cardiff on Friday to discuss that with my opposite number who attended the Cobra meeting today. We are working very closely with the Welsh authorities, which, of course, run the NHS in Wales.

[Ben Lake (Ceredigion) (PC)]

What consideration have the Government made of the possibility that some people, especially those living in London, may, in light of today’s announcement, decide to move from more urban areas to rural areas? Will the Secretary of State reassure us that additional resources will be made available to local health authorities should there prove to be a significant shift in population?

[Matt Hancock]

Yes, of course, I will keep both of those under review.

Genetic Haemochromatosis

Ben Lake Excerpts

Wednesday 3rd July 2019 Westminster Hall

[Ben Lake (Ceredigion) (PC)]

Diolch, Mr Sharma. It is a pleasure to serve under your chairmanship. I congratulate the hon. Member for Rugby (Mark Pawsey) on securing this important debate and I pay tribute to Haemochromatosis UK for its work supporting both the sufferers of the genetic condition and the all-party parliamentary group. If I may, I particularly thank Lisa Flude, who first brought the condition to my attention and has been an invaluable source of information and advice to me in recent months.

As we have already heard this afternoon, genetic haemochromatosis is the most common genetic disorder in the UK and yet it remains largely unknown or unfamiliar. Too often it is poorly diagnosed and managed. Approximately 10% of individuals of white European descent in the UK—as my hon. Friend the Member for West Dunbartonshire (Martin Docherty-Hughes) pointed out, this particularly affects those of Celtic descent—or some 5 million people are believed to be genetic carriers of the mutated copy of the haemochromatosis or HFE gene, as the hon. Member for Rugby mentioned. Perhaps 100,000 or 200,000 people might have two mutated copies of the HFE gene and are then at the risk of iron toxicity or overload and the subsequent diseases and conditions that can emerge from that. Yet—this is the nub of the debate in my opinion—for every patient diagnosed with the condition, between eight to 10 are left undiagnosed and unaware of the risk to their health. It is some risk, too: although genetic haemochromatosis is easy to diagnose and to treat, if left untreated it has serious consequences.

The hon. Member for Heywood and Middleton (Liz McInnes) referred to the two recent studies led by groups from the Universities of Exeter and Connecticut. They have shown that the condition quadruples the risk of liver disease and doubles the risk of arthritis and that individuals with the condition are at higher risk of diabetes and chronic pain. In addition to those serious health complications of iron overload, individuals with genetic haemochromatosis can suffer from fatigue, muscle weakness and joint pains. Unfortunately, those symptoms are often mistaken for the signs of ageing or tiredness, but together they can still prove debilitating. Yet genetic haemochromatosis can be diagnosed and treated effectively when detected. The treatment, as we have already heard, entails venesection. I will not go into that any further, but it is a safe process that should be widely available across the UK.

Given the pervasiveness of genetic haemochromatosis and the serious impact that iron toxicity has on an individual’s health and wellbeing, the case for ensuring consistent and effective diagnosis of the condition across the UK is clear. It is not a condition for which there is no treatment or diagnosis. The problem that we face is the lack of consistency, or standardisation, as the hon. Member for Rugby put it, in the application of clinical guidelines.

A survey of health boards across the country showed that even where protocols are in place they are often non-mandatory and differ between boards. Sometimes they are discipline-specific, which can be problematic in itself when we consider that haemochromatosis is often treated by a range of specialists, including hepatologists, haematologists and gastroenterologists.

Introducing standardised guidelines, and ensuring their consistent application, has the potential to increase diagnosis rates tenfold. Early diagnosis prevents so much unnecessary pain and suffering. I hope that the Minister can explore the introduction of more standardised guidelines or patient pathways for the diagnosis of this condition, as it would vastly improve treatment and management of the condition.

If further persuasion were needed, improved diagnosis and earlier treatment of genetic haemochromatosis has the potential to save the NHS considerable resources in the long term, as other Members have mentioned. Iron overload can cause a range of cancers, heart failure, diabetes, and joint disease. Researchers have found that, for men, 1.6% of all hip replacements and 5.8% of all liver cancers occurred in those with two HFE genes. The treatment of those conditions exerts incredible pressure on both primary and hospital care, without considering the impact that multiple appointments over years by patients with non-specific chronic conditions have on primary care.

I am conscious that you want me to finish, Mr Sharma, so to conclude, addressing the current lack of national or standardised guidelines and thus improving the rate of diagnosis of genetic haemochromatosis could reduce the unnecessary suffering of thousands of individuals, while saving the NHS much-needed resources. As somebody more eloquent than I put it, it is a no-brainer.

[Mr Virendra Sharma (in the Chair)]

I am sorry, I was conscious of the time—I want the Minister and the Opposition spokesperson to respond as well. I call Gavin Newlands.

Appropriate ME Treatment

Ben Lake Excerpts

Thursday 24th January 2019 Commons Chamber

[Ben Lake (Ceredigion) (PC)]

I join others in congratulating the hon. Member for Glasgow North West (Carol Monaghan) not only on securing this important debate but on her tireless work, with others, to raise awareness of the difficulties that individuals with ME endure; on relentlessly challenging authorities to improve the way in which they support sufferers; and on giving a voice to those who all too often feel abandoned and alone.

As we know, ME is a chronic, multi-system disease that impacts approximately a quarter of a million people across the UK. To put that number into context, ME affects more people than the terrible Parkinson’s disease and multiple sclerosis combined. It is estimated, as has been mentioned, that it has an economic cost of some £3.3 billion. One would imagine that those considerations alone were sufficient to ensure adequate funding for biomedical research into ME and clinical care for those suffering from the disease, and yet ME research represents just 0.02% of all active grants given by UK mainstream funding agencies. It really does beggar belief that research into an affliction that leaves 25% of sufferers housebound or bedbound, and from which 95% of people do not recover, receives so little funding. This underinvestment needs to be addressed urgently, and I hope that the Minister can help in this regard. I also support a review of NICE guidelines on the treatments prescribed for ME and hope that that can be implemented as soon as possible. If positive changes are adopted, I hope, of course, that they are, in turn, implemented by the Welsh Government so that ME sufferers in Wales can benefit.

It is near impossible for those of us fortunate enough to not suffer from ME to truly comprehend its real, tangible impact, so I would like to conclude with the words of two individuals who have contacted me to share their experiences of the disease. John Peters suffers from ME and was first struck down in the 1980s. The impact on his life has been total, as he so painfully put it to me:

“I have missed the whole spectrum of life: the big things such as family, a career; holidays, celebrations, the ‘hooks’ of someone’s years; but also the minor events—that night out with a friend, the moment on a mountain, the lazy morning in bed with someone, that fantastic book, the sharing of a joke.”

Saran, a teenager from Ceredigion, has suffered from ME for over a decade and is now mostly housebound after receiving a formal diagnosis only last year. She told me:

“I have no idea what a life without chronic pain is, I don't know what it’s like to be able to tolerate noisy bright spaces, what it’s like to remember the conversations I’ve had with those I love…I have slowly watched my life disappear over many years, and now I’m entirely dependent on my parents, have no job, A levels, or hope for the future.”

I sincerely hope that this debate succeeds in its objectives, for we simply cannot wait any longer. John and Saran deserve some hope for the future.

Baby Loss Awareness Week

Ben Lake Excerpts

Tuesday 9th October 2018 Commons Chamber

[Ben Lake (Ceredigion) (PC)]

Let me begin by expressing my admiration for the hon. Member for Eddisbury (Antoinette Sandbach), who made such a powerful contribution to the debate and, in particular, for her personification of bravery when recounting what can only have been a painfully traumatic experience.

I speak as someone who has not lost a child and who, as such, cannot begin to imagine how harrowing, how devastating, such a loss must be. I cannot begin to understand what it feels like to have enjoyed the exhilaration of expecting a new addition to the family and the months of anticipation and preparation, and then to be deprived of such joy.

As a society, we must strive to reduce the UK stillbirth rate, which remains high in comparison with those of other wealthy countries. There is also a disparity within the United Kingdom that needs to be acknowledged: Wales still has the highest stillbirth rate, at 4.44 per 1,000 births. Others who are present this evening will have far greater experience and expertise than I—so I will keep my remarks brief—but it appears to me that a range of measures will be needed to reduce our rate significantly. For example, researchers from the University of Edinburgh have recently discovered that introducing a package of care when women report a change in foetal movements can help to reduce the stillbirth rate slightly. Raising awareness among expectant mothers is important, but we should also ensure that training for frontline maternity professionals is not only available but prioritised, so that they are best able to react to any change in movements reported by mothers. Training and resources must be made available to maternity units so that they can act promptly when necessary.

As I am sure will be mentioned later this evening, hand in hand with greater awareness of changes in foetal movement is the potential for an enhanced programme of ultrasound scanning into the third trimester—which occurs elsewhere in Europe—to measure a baby’s growth more effectively, potentially reduce the number of adverse perinatal outcomes caused by foetal growth restriction and prevent avoidable deaths. This is, of course, at the heart of the debate: the desire to represent the experiences of parents who have lost their child and, from their strength, endeavour to prevent others from having to suffer the agony of losing their child.

Let me express my admiration for the bravery of all the parents—some, I know, are in the Chamber this evening—who have lost a child. I am simply in awe of those who are able to speak so eloquently about their loss and work determinedly to improve things for other parents. I pay particular homage to the Members who are so active in the all-party parliamentary group on baby loss.

A young couple in my constituency embody such courage and fortitude. Having lost their little girl, Mari-Leisa Jên, this summer, Clare and Gareth have undertaken a range of initiatives to raise money to help to fund the purchase of additional “cuddle cots” for Ceredigion. The cots allow grieving families to have more time with their children— precious time in which to make lifelong memories—and I thank the charity Cariad Angel Gowns for enabling that to happen for Clare and Gareth.

The couple have climbed Snowdon to help raise money for the cots and to raise awareness of the causes of perinatal loss. Close friends completed the Cardiff half-marathon this weekend in memory of Mari-Leisa Jên. At a time of unimaginable grief, when most would understandably retire into themselves, Clare and Gareth have thought of helping others and, to date, have raised thousands of pounds. Such incredible resilience speaks for the strength and depth of their love for Mari-Leisa, and although her time with us was all too brief, the impact that she has had on family, friends and the local community is second to none. Mari-Leisa fach has brought them together to make a positive difference for others, and I, for one, cannot think of a more loving or a more worthy legacy.

ME: Treatment and Research

Ben Lake Excerpts

Thursday 21st June 2018 Westminster Hall

[Kerry McCarthy]

Yes. So much concern has been expressed about graded exercise therapy and many patients prefer the concept of pacing, which is balancing activity and rest to help them to manage their ME and work towards recovery. However, that approach is not currently recommended by NICE. I very much hope that the Minister picks this issue up, because it is probably the most controversial issue around the treatment of ME at the moment. I welcome NICE’s decision to review its guidelines—the new guidelines are expected in October 2020, I think—and I urge NICE to listen to the voices of patients with ME.

We have heard from other speakers about biomedical research and the decades of underinvestment in that research. We have also heard that the average research spend per person living with ME is less than £1 a year and that much of that money is provided by charities rather than Government. We can also consider the economic cost of not helping people at least to find a way to manage a condition such as ME; ideally, we would find the cause of ME and a cure for it. Clearly, that economic cost is unacceptable.

[Ben Lake (Ceredigion) (PC)]

The hon. Member has made a very important point about the decades of underinvestment. A friend of mine, John Peters, suffers from ME and was first struck down in the 1980s. The impact on his life has been total. He acknowledges that he would not have been able to do everything in life; he knows that there would have been ups and downs. But as he quite painfully put it to me, he has not had the chance to fail. His is a life unlived. So, given those decades of underinvestment, it is so important that we now change things for the future.

[Kerry McCarthy]

Yes. This is the problem we see over and over again with NICE: how do we value quality of life? We can look at the economic opportunities that are also lost if someone has to spend a lifetime on benefits rather than working and paying taxes, but there is so much more that they could perhaps have contributed to society and that opportunity has simply been lost.

In the time that is left to me today, I will mention the benefits system. We have already heard from other Members about it. Time and time again, we see that the assessments for employment and support allowance and for the personal independence payment just cannot cope with people who have fluctuating conditions, or with people who might be able to pass a test but who feel absolutely dreadful afterwards.

My friend scored zero on the test because she was trying to be as honest as possible, and if she was asked whether she could walk up a flight of stairs, she would reply that she could. However, on a bad day it would probably take her an awfully long time and she would collapse in a heap at the top. Actually, one of the reasons she was turned down when she went for the face-to-face assessment was that the examiners said, “Well, you look very presentable and you’ve washed your hair.” I know that she is bedridden for days at a time and cannot wash her hair, but clearly if she drags herself out for an assessment and is well enough to attend it on a particular day, she will try not to look like she has just got out of bed.