Countess of Chester Hospital Inquiry

Liz Saville Roberts Excerpts

Monday 4th September 2023 Commons Chamber

[Steve Barclay]

My right hon. Friend is absolutely right about the way that the trial re-triggered a lot of pain and suffering for the families. What I found particularly powerful when talking to them was the fact that they discovered new information during the course of the trial, including harm to their children that they had not been told about hitherto. That was particularly concerning, and clearly serious lessons need to be learned from that. In terms of the support, one of the reasons for wanting to engage with them at the earliest opportunity was to ensure we are doing all we can to support them, and that is central to how I understand the judge will look to structure the inquiry to ensure that the wishes of the families are central to the approach that is taken.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Letby’s crimes freeze the heart, and I commend the Secretary of State for the inquiry being statutory. Although health is devolved, babies from across north Wales are regularly sent to hospitals in north-west England, including the Countess of Chester for specialist care and treatment. What assurance can the Secretary of State give to Welsh families that the statutory inquiry’s terms of reference will include cross-border patient safety and the safety of babies in hospitals possibly hours away from their families in Wales?

[Steve Barclay]

I am grateful to the right hon. Lady for raising that extremely important point, because the cases of five of the babies concerned in the trial were cross-jurisdictional. It is important that we take on board those lessons and look at how those cases that apply to a baby or family from Wales are captured, and I know that is something that Judge Thirlwall will give consideration to, shaped by her discussions with the families.

Cancer Medicines: Appraisals

Liz Saville Roberts Excerpts

Tuesday 13th June 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered the matter of appraisals for cancer medicines.

It is a real pleasure to serve under your chairship, Mrs Harris, and I am always pleased to see you in the Chair, as you know. I am always greatly impressed by your commitment to these issues, and I have been pleased to support you in a small way, although always fully. I thank you for being here.

I thank Members for coming along to participate in this important debate. I am pleased to see the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), in his place, and the SNP spokesperson, the hon. Member for Midlothian (Owen Thompson). I do not think there is a debate when the Labour spokesperson and I are not together, and we are, more often than not, saying the same thing. I am also incredibly pleased to see the Minister in his place, and it is no secret that he listens and responds to the questions we ask. I think he will find today that there is a united front pushing for the same things. Hopefully, we are pushing at an open door and he can respond in a positive fashion.

It is great that Members have the time to be here to support this matter. The UK’s health technology appraisal process must evolve if it is to keep pace with innovations in cancer treatment and improve outcomes. That is important because, across this great United Kingdom of Great Britain and Northern Ireland, one in every two people—half the people we meet out on the street—will be struck by cancer. My father had cancer on three occasions. He was a Christian and he survived all three times due to the prayers of God’s people, the skill of the surgeon and, ultimately, the care and love of the nurses and the family who supported him.

There are many global healthcare challenges, and the UK must emerge as a leading force. That is why this debate, which is specifically about appraisals for cancer medicines, is so important. It is essential that the Government, the NHS and the National Institute for Health and Care Excellence evolve their processes to address emerging access challenges—and there are challenges. We must have a process that moves quicker, focuses attention and delivers in the necessary timescale.

In July 2022, cancer waiting lists stood at over 320,000 across the UK, which is breathtaking. In addition, there are wider challenges with patients getting treatment in Northern Ireland. As you and others will know, Mrs Harris, I always try to give a Northern Ireland perspective. I am ever mindful that this is not the Minister’s responsibility, but what is happening in Northern Ireland encapsulates what is happening in the UK, Scotland and Wales. Waiting times for cancer treatment in Northern Ireland are the worst on record. Just a third of urgent suspected cancer referrals from GPs—only 35.6%—began receiving treatment within the 62-day target in the final quarter of last year. We have a big challenge, there is a lot to do and there is clearly a lot more for Northern Ireland to do. It is incredibly concerning that we have deteriorated further since those figures from 2021-22. Back home we have a crisis; a catastrophe is perhaps waiting to happen. It is unacceptable that almost 64% are waiting too long to start cancer treatment.

We in Northern Ireland have a cancer strategy that echoes the asks of many cancer charities across NI, including Cancer Focus Northern Ireland and Cancer Research Northern Ireland. I want to put on record my thanks to those cancer charities, which do fantastic work and are very good at contacting us—I do not think there is an MP here who does not have regular correspondence with them. The information they formulated and sent to myself and others before the debate was really helpful.

The cancer strategy was agreed in March 2022 but, over a year later, given stringent funding cuts from central Government, we simply have not had the finances to fully implement it. It still has the potential to play a crucial role in the transformation agenda of the health and social care service, and I believe that it will prove to be an exemplar of true healthcare for cancer sufferers, but we look to our Ministers back home and here in Westminster to ensure that we have the funds to make that happen.

Throughout the United Kingdom of Great Britain and Northern Ireland, cancer survival rates have risen thanks to improvements in planning, but levels of diagnosis and treatment lag significantly behind those in other countries for some cancer types, especially our five-year net survival rates.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

I congratulate the hon. Member on securing the debate. He mentioned the significance of diagnosis. Medical radioisotopes are highly significant for the diagnosis and treatment of dangerous cancer cells, and it is important to secure a domestic supply of them, in terms of both security of supply and cost. I am told there is a shortage of supply in the offing in the United Kingdom, but there is a chance to secure a generating reactor at Trawsfynydd in north Wales, known as Project ARTHUR. I am sure the hon. Member agrees that it would be a positive step for cancer care in the UK if the UK and the Welsh Government were able to make progress together on delivering that project.

[Jim Shannon]

As so often in Westminster Hall and in the main Chamber, the right hon. Lady makes a positive suggestion, and it is one I know you would also support, Mrs Harris. We think it should be the Government’s intention to make every effort to deliver that project in Wales alongside the Welsh Assembly, because it will help us all in the United Kingdom. I always enjoy these debates because they bring us all together, focused on the issue and not the politics of it. If we can make life better for all of us in the United Kingdom through that project in Wales, let us do it. I do not know whether the Minister has had time to prepare, but hopefully his civil servants will give him some indication on that, and then we can look forward with a positive suggestion out of this debate. I thank the right hon. Lady for her intervention; it was very helpful.

Our poor international standing and lack of supportive frameworks mean that, in some cases, certain innovative cancer medicines are not submitted for UK regulatory approval or to NICE, further impacting access for UK patients. Resolving challenges in the appraisal process for licensed medicines will provide important benefits. First and foremost, there will be benefits to our constituents and patients, including, importantly, access to a wider range of treatment options and the potential for improved outcomes for those needing treatment.

Secondly, there will be benefits to the NHS, which will be able to deliver more efficient care and have permission to access a full range of licensed medicines. Thirdly, there will be benefits to the UK—this great nation—because resolving these challenges will improve its attractiveness as a destination for clinical research by incentivising research and development to focus on new and more challenging patient populations. How the Government respond to what the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts) asked for is an indication of how we will move forward and lead the way.

One issue is that NICE guidance is not automatically applicable in Northern Ireland, although the Department of Health there does tend to adopt NICE guidelines and approaches. As such, the patient access challenges outlined will likely have the same impact on Northern Irish cancer patients as they will on cancer patients in England and Wales. To be a successful, leading force in cancer medicines and treatments, we must be united, not divided, in how we tackle these issues. I have always been an avid believer in the idea that no nation in this United Kingdom should be left behind, and I know the Minister has always been committed to that; whatever the subject of a debate, he encapsulates my thoughts on how important it is to work together.

There will be challenges for medicines in the cancer drugs fund. Following the update of NICE’s methods and processes, medicines currently in the cancer drugs fund will be measured against different criteria to those used when those medicines entered it. That could mean that, for some medicines, the likelihood of recommending routine NHS access is significantly reduced, so we need some reassurance on that.

The cancer drugs fund is a source of interim funding for cancer drugs in England. It provides access to promising cancer medicines via managed access arrangements. The Northern Ireland Department of Health confirmed in 2018 that medicines approved by NICE for use through the cancer drugs fund will be equally accessible in Northern Ireland through a separate budget pot, which I urge the Minister to defend against any future budget cuts. I know that is not the Government’s intention, but it would be nice to have that reassurance today so that we can report it to everyone involved back home.

Given that medicines are to be reappraised under the NICE guidelines, they will not be appraised against the same criteria. I have ascertained that NICE is not presently considering any flexibility for medicines in that situation. For certain medicines, that will mean that the likelihood of recommending routine NHS access will be further reduced, and probably one of the major asks in this debate is to ensure that that does not happen.

The Government confirmed that 43% of medicines currently in a period of managed access through the CDF include the end-of-life modifier. Issues remain around who can access what medicines. New patients will not be given access to cancer drugs fund-approved drugs if they are not originally taking the drug at the first NICE regulation. Sometimes there needs to be flexibility in how drugs are allocated. It is not just a black and white tick-box exercise—it never is. We need to focus on the circumstances of the individual, the patient and our constituents—I know from his responses to questions that the Minister understands that, and we seek reassurance that that would be the case. The issues I have outlined mean that new cancer patients have no access to old drugs, so future eligible patients will lose out on options in their treatment plan. We seek reassurance that, when it comes to their treatment plan, eligible patients are given options to ensure that they are not debarred by some paper exercise—if I can use that phrase, with great respect.

NICE must act to address the impact that updates to its methods and processes will have on medicines currently in the CDF, especially in Northern Ireland, where these methods are usually followed to the rule. Ensuring that medicines in the CDF can be assessed against the same criteria under which they were initially recommended for use in the NHS will increase confidence for cancer sufferers that the medicines to which they so desperately need access are available. If the Minister has one positive reply for us today, that is the one we would ask for, because we know that it would bring relief to many people right away.

There will always be issues surrounding cost and the cost-effectiveness of financing a drug. The 2019 voluntary scheme for branded medicines pricing and access is an agreement between industry and Government that aims to meet the need to keep the NHS medicines bill affordable. I know there is a need to do that, but there is also a need to make the medication and drugs available, with the ambition to grow the life sciences sector as well, which we must do and have done before. The partnership between Government, pharmaceutical companies and universities is one that I recognise from Queen’s University Belfast and Ulster University in Northern Ireland. Those two universities have great relationships and partnerships with pharmaceutical companies that are to the fore of finding new cures for disease.

The scheme operates through rebate mechanisms, where companies pay a percentage of their net sales back to the Government. Historically, the rates in the voluntary scheme have averaged well below 10% of revenues, but as of 2023 they are 26.5%—wow! That rapid rise was driven by several factors, including the post-pandemic demands on the NHS and the fact that the UK is now widely out of line with comparator countries. Not only does the current level of repayment risk costing the UK economy far more than it saves, but it has an incredible impact on patients’ access to medicines. Again, we need some reassurance from the Minister on that.

For the UK to continue to be an attractive destination for clinical development, which brings benefits to all areas of the United Kingdom of Great Britain and Northern Ireland, a solution to the cost challenge must be found. In presenting the facts of the case and the evidential base, all of us present are very much solution-based, and our questions to the Minister will be about finding solutions.

Further combination therapies have been instrumental in combining medicines to attack different types of cancer and cancerous cells. There are still multiple unresolved issues around the value assessment, which I will briefly list, and I thank Sanofi for making me aware of this information before the debate—indeed, some organisations have been incredibly helpful in giving us a train of thought and a focus for requests, and hopefully we can be solution-driven.

Combination therapies undergoing appraisal can be found not to demonstrate cost-effectiveness or value for money. Furthermore, pricing barriers have proven problematic for manufacturers when two therapies are involved. The manufacturer of the new medicine has no influence over the price of the new therapy, meaning the total cost may go over the cost-effectiveness threshold. We all regularly meet lobby groups and pharmaceutical companies, which tell us that the NICE process is making it difficult for them to advance their medicines to provide relief and find a cure. I know that Governments have to be responsible and do not have the power to spend money willy-nilly, but it is important that we grasp what the manufacturers and pharmaceutical companies are trying to achieve.

Combination therapies can offer people suffering with cancer a better quality of life, a better response to treatment and—this is really what it is all about—a better chance of survival, which is so important. The UK must learn from countries such as Spain and the US in creating a more cohesive and agile path from pre-trial to treatment. Those are just two countries that have an excellent methodology for trying to advance. Hopefully, the Minister will reassure us that we in the United Kingdom are doing the same as other countries. The US dominates certain research, such as in immunotherapy, followed by China. The UK is in third place, with a global share of approximately 5%. Third place is not bad—it is a bronze medal—but we would like to move a wee bit further beyond that, and I think it is possible. The ideas are here, the technology is here and the will is here. We just need to drive it.

We must learn to strengthen links between UK academia, clinical medicine and industry, at a time when it is being reported that the number of industry-backed clinical trials has decreased by 41% since 2017. I know there has been a focus on covid, with everybody trying to find the cure, but let us get back to where we were before and lead the way again. I do not see how we can say that we are doing more to expand the variety of medicines that we offer patients, when the number of trials has declined by almost half.

I cannot emphasise enough how important it is that we ensure that the United Kingdom remains an environment where companies want to bring medicines forward for NICE appraisal in the first place. Being able to approve access to innovative cancer medicines is critical if we are to improve patient outcomes. The UK currently ranks 16th out of 18 comparable countries for five types of cancer, and it is important that we address the challenges with appraising cancer medicines to ensure that patients continue to access the new, innovative treatments in the pipeline. It is so important to get that pipeline concluded and the product line out the other end.

What is the solution? First, it is about exploring and adapting to the challenges and issues that must be overcome in terms of costing, combination therapies and fairer price negotiations for manufacturers and the NHS. The UK Government—our Government—must, in collaboration with NICE and the NHS, work with industry and patient organisations to develop and trial a sustainable solution.

Cancer has killed too many in recent years. Advances in medication and medicine have increased the likelihood of survival—not when my dad had cancer 40-odd years ago, but today. Cancer affects too many loved ones; there are too many horror stories, which we, as Members of Parliament, hear regularly. We do not always get the good stories; it is usually the bad stories about what has gone wrong. As MPs, our duty is to bring them forward on behalf of our constituents and highlight them, as we have done today.

The NHS can work closely with the cancer drugs fund to improve patient access to the good and decent drugs that will help them, and ensure that nobody is left behind. I sincerely thank all the organisations that have been in touch with me and others ahead of the debate on an issue that is so important and affects so many. I say a special thank you to Sanofi for its efforts and support and for answering my questions and queries.

We in this United Kingdom of Great Britain and Northern Ireland have real potential to ensure the best outcomes for constituents and patients. I look to the Minister for reassurance, which I am sure is coming, that we will continue to do all we can to work with the devolved nations—Scotland, Wales and Northern Ireland—and NICE to improve people’s lives. Our job is to do just that. If we can improve people’s lives and help them to live longer, what a joy it will be to have those answers.

--- Later in debate ---

[The Minister for Health and Secondary Care (Will Quince)]

It is a pleasure to serve under your chairmanship, Mrs Harris. I thank the hon. Member for Strangford (Jim Shannon) for securing this important debate on appraisals for cancer medicines and thank all Members who have contributed to a hugely valuable discussion.

The hon. Member said that he thought the debate would be a presentation of a united front, and that has been demonstrated today. He also said that he hoped he was pushing at an open door. On many of the points he made, he certainly is doing that. He spoke with great passion and empathy for those who suffer from this terrible disease, and I commend him for bringing this issue to my attention and the attention of the Government. Unusually, for a Westminster Hall debate, I have some time to respond to the points, so as ever, I will offer all Members who would like it a meeting to discuss any of the issues that have been raised in greater depth, but I will try to cover them in as much detail as I can in my response.

According to Cancer Research UK, one in two people will develop cancer at some point in their lives. There are around 290,000 new cancer diagnoses a year, equating to around 780 every single day. I am acutely aware as a Health Minister that when we use statistics such as these, we must remember, as the hon. Member for Mitcham and Morden (Siobhain McDonagh) eloquently and articulately pointed out, that these are people; these are human beings who we all know and love—a dear friend, a loved one, a member of our family. It is important when we talk about statistics that we do not lose sight of that.

Let me turn to the hon. Lady’s contribution. She made a powerful speech, and it is not the first that I have heard from her and had the good fortune to respond to. She rightly made a powerful and emotive case on behalf of her sister Margaret and all those who suffer and have suffered with brain tumours. I think she knows my commitment to doing all I can to improve the situation in relation to brain tumours. In truth, I think I have spent more time on this particular issue in my time as a Minister than I have on any other condition under the umbrella of the major conditions strategy. I will continue to do so, not just because of the powerful case that she makes, along with others across this House and campaigners, but because I know there is an injustice in that this area does not get the attention it deserves, and I want to address that. I have raised it with the chief scientific adviser, who heads up the NIHR, and it is important to also raise it with NICE.

I have met the hon. Lady, and I would be happy to do so again. She makes a powerful case that we need the pharmaceutical industry to step up in this space, and I am keen to work with her to see what more we can and should do to make sure that happens. Finally, let me thank her for her kind words about my leaving Parliament at the next election. I assure her that I will do all I can for as long as I am in this role to help her achieve the objectives she seeks.

I join the hon. Member for Strangford in paying tribute to all the cancer charities—some very large and some very small—that work to support patients up and down this country. He is right to draw the House’s attention to that.

The NHS has seen enormously high demand for cancer checks. More than 2.8 million people were seen in the 12 months to April this year, up by 26% compared with the same period pre-pandemic. That returning demand is positive after the falls we saw during the pandemic. We are working closely with NHS England to reduce the amount of time people are waiting to receive a diagnosis, and we are making progress; it is not as fast as I would like, but we are working very hard to make progress. The latest published figures show that the 62-day cancer backlog for the week ending 30 April stood at 22,533. It has fallen by 34% since its peak in the pandemic, but I am acutely aware—this preys on my mind every single day—that it amounts to more than 22,000 people, too many of whom have had to wait 62 days and are struggling with the anxiety of waiting for either a diagnosis or the all-clear.

The hon. Member for Strangford set out the scale of the challenge we face, which I touched on there, but I will move on to what we are doing to address this. The Government are spending more than £8 billion on the elective recovery fund, £700 million on the targeted investment fund and, importantly, as has been referenced in a number of contributions, £2.3 billion of capital funding has been made available to increase our diagnostic capacity—those 160 additional community diagnostic centres. I was able to give the hon. Member for Denton and Reddish (Andrew Gwynne) some good news on that for his constituency recently.

We have 108 community diagnostic centres operational at the moment. I announced a further number only last week, and we have another eight coming on stream. We want to get to 160 centres by 2025, but I want to do it as quickly as we possibly can. There will also be additional surgical hubs. Those CDCs have already since July 2021 delivered over 4 million checks, so we have to get those open and operational as quickly as possible.

[Liz Saville Roberts]

The Minister is of course aware of the proposal for a medical radioisotopes facility in north Wales, which is crucial for diagnosis in the future. I wonder whether he is also aware that this would complement Bangor University’s Nuclear Futures Institute and its planned new medical school. We are all aware of the shortage of clinicians. I am concerned that the centre for doctoral training in nuclear energy futures at Bangor, which plays a vital role for PhD projects and their funding, has had its application for renewal rejected by the Engineering and Physical Sciences Research Council.

I would be grateful if the Minister clarified whether he is aware of this issue. I appreciate that it is local, but when we are looking at the future, these local solutions will be absolutely critical. If he is not aware of this, could he commit to raising it with the Department for Science, Innovation and Technology and his counterparts in the Welsh Government? Most importantly, could I plead with the Minister for a meeting with him to discuss the wider issue of radioisotopes availability, their cost and the security of supply in the future?

[Will Quince]

The answer to both is yes, and yes. If the right hon. Lady would write to me with the details, I will certainly raise the issue and meet to discuss radioisotopes specifically.

NHS England is working very closely with the independent sector to ensure that we are using all the available capacity to us to deliver both diagnoses and treatment as quickly as possible. The Government announced the major conditions strategy on 24 January, which is important for cancer as it draws on previous work on cancer. Over 5,000 submissions were provided as part of our call for evidence last year, and we will continue to work closely with stakeholders, the public and patients—whose voice should never be forgotten, as the hon. Member for Strangford rightly points out—and the NHS in the coming weeks to identify the actions we need to take as part of the strategy that will have the most impact.

Specifically on NICE appraisals, the hon. Member raised several concerns about the way in which cancer medicines are appraised. Members will know that NICE is rightly independent of Government. It is an expert body that makes evidence-based recommendations to the NHS on whether new medicines should be routinely funded by the NHS on the basis of on assessment of clinical and cost effectiveness. Those recommendations then develop, mainly for the NHS in England, but as was mentioned, they are usually adopted by the NHS in Wales and in Northern Ireland. Scotland has its own system. This is a difficult matter to raise, but it is important to point out that every pound that we spend on a new medicine is money that is not available for other services, and the NICE appraisal process ensures that NHS funds are spent in a way that provides the greatest health benefit to society. That is a hugely difficult job, which NICE does with great professionalism.

Again, it is important to point out that NICE appraises all new medicines and that its approval rate for cancer medicines has consistently been around 90%–I think that the latest figure is 92%. It is absolutely right that when NICE recommends a medicine for the NHS, it is available for patients and NHS England is required to fund that drug or treatment. I know that the NHS in Northern Ireland and in Wales has adopted a similar model.

NICE’s methods and processes for assessing new medicines are internationally respected, and they have evolved over time to ensure that they reflect best practice and keep pace with advances in medical science. As my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) pointed out—I will come on to this in some detail— NICE concluded a comprehensive review of its appraisal methods and processes last year, which it carried out with a high level of ambition and transparency. As she pointed out, changes include the introduction of a new severity modifier, which will give NICE more flexibility to recommend medicines for more severe diseases at higher prices. The severity modifier replaces the previous flexibility for end-of-life treatments.

My hon. Friend raised some concerns about that, and I always listen very carefully to what she says on this and many other issues, especially given her personal experience and campaigning. She is right to say that the situation is hugely complex, and her point about data is a really good one, because decisions need to be informed by good-quality data. I would be happy to meet her to discuss how we can ensure that we are collecting data not just on a regional basis, but nationally, so that we can make sure that NICE is making informed decisions. As she rightly points out, we need to ensure that patients and their voices are always at the heart of all the decisions made by not just the Government, but NICE. I would be happy to meet her to discuss that in greater detail.

On the broader point about whether the introduction of a severity modifier in place of an end-of-life modifier will affect cancer drugs specifically, analysis was carried out by NICE in developing the modifier. It indicated that the vast majority of cancer medicines that would have been eligible for the end-of-life modifier would also be eligible for a weighting under the severity modifier. I am happy to meet my hon. Friend and any other Members who would like to meet NICE to discuss this issue further.

NHS Winter Pressures

Liz Saville Roberts Excerpts

Monday 9th January 2023 Commons Chamber

[Steve Barclay]

Let me first congratulate my right hon. Friend—along with the whole House, I am sure—on the knighthood that he received from His Majesty.

According to the analysis we have received, the variant in China is the same as the one in the United Kingdom. On the other hand, the data shared by China is often not as clear as we would like. That is why, over the Christmas period, my right hon. Friends the Prime Minister and the Secretary of State for Transport announced proportionate measures involving covid tests for travellers and, in particular, sequence variant testing for those coming into the UK, in order to identify any new variant quickly.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Strikes by nurses and ambulance workers are a last resort for overworked staff, who fear that patient safety is suffering as a result of increased demand and staff shortages. Instead of providing proper pay increases, the Labour Welsh Government have responded by offering Welsh health service staff tokenistic one-off payments, and, reportedly, the right hon. Gentleman’s Government are considering doing the same in England. Can he guarantee that if that approach is taken, one-off payments will be recognised as support with the cost of living crisis rather than proper pay increases, and will be treated as such for tax and benefit purposes?

Huntington’s Disease

Liz Saville Roberts Excerpts

Wednesday 9th November 2022 Westminster Hall

[Hilary Benn (Leeds Central) (Lab)]

I beg to move,

That this House has considered Huntington’s disease.

It is a great pleasure to serve under your chairmanship, Mr Robertson, and to see the Minister in her place. I thank all the Huntington’s disease organisations in England, Scotland, Wales and Northern Ireland for the vital work they do and for the help and expertise they have given me in preparing for this debate. Back in May I tabled early-day motion 72 on Huntington’s, and I am really grateful for the support it received from Members on both sides of the House. My colleague Jackie Baillie tabled a similar motion in the Scottish Parliament, which I am told secured record support. I should also declare that my interest in this subject is the direct result of knowing someone who has the disease.

Huntington’s is a rare genetic neurodegenerative disorder that, over time, basically stops the brain working properly. It affects some 8,000 people in the UK, but around 32,000 people are living at risk of developing it for the simple but deadly reason that Huntington’s can be passed from generation to generation. This means that a diagnosis of Huntington’s does not just affect the person who has it; it also affects their children, who have a one in two chance of carrying the gene. There is a predictive genetic test to find out whether someone has the faulty gene that causes the disease, but I am told that on learning of, say, their parent’s diagnosis, the vast majority of people do not want to know and prefer to travel in hope. For all those reasons, it is a devastating diagnosis, because there is no cure, and there is only limited palliative care.

Imagine for a moment the questions that go through somebody’s mind when a loved one gets the diagnosis. How long has my spouse or my parent got? What is going to happen when they can no longer look after themselves? Which of our children has it? Should we tell the rest of the family? Will my loved one’s personality change, so that they end up shouting at me or even assaulting me? In many ways that is probably the most difficult thing to cope with, because we are losing the person we love not just physically but emotionally. This horrible disease makes them no longer the person they once were, and there is nothing—absolutely nothing—we can do about it.

It is very hard fully to convey what this means, so let me quote a letter I have received from someone who writes of

“being forced to witness the agonisingly slow degeneration of someone you have known and loved for nearly forty years, and how hard it is to keep remembering the person that they once were. That man—a loving, supportive spouse and utterly devoted father—was erudite, kind, attentive, with a wickedly dry sense of humour. He bears little resemblance to the unsteady figure with unclear speech, alternating between bouts of aggression, anxiety and apathy, with whom I now share my home.”

That is what sufferers and their families have to live with.

The symptoms of Huntington’s are many, and the list I am about to give is by no means exhaustive. They include early onset dementia; difficulty concentrating; lapses of memory; cognitive decline; depression; anxiety; obsessive disorders; psychosis; stumbling and clumsiness; involuntary jerking or fidgety movements of the limbs and body; difficulty moving; mood swings; personality changes; irritability; apathy; disinhibition; problems swallowing, speaking and breathing; fatigue; loss of weight; incontinence; and sexual dysfunction. In the later stages, full-time nursing care is needed.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

I am immensely grateful to the right hon. Gentleman for giving way, and I congratulate him on securing the debate. He is speaking very movingly.

One thing that has been emphasised to me is how important it is to remember the carers—particularly the family carers—affected by this condition. I am sure the right hon. Gentleman will join me in impressing upon the Minister the importance to families who are going through this experience of granting the facility of respite care for family carers at a time of real carer shortages.

[Hilary Benn]

I am profoundly grateful to my right hon. Friend for attending this debate, and I agree completely with what she has said. I will come to the question of the needs both of people who have the disease and of those who care for them.

In short, those affected will lose the ability to walk, talk, eat, drink, make rational decisions and care for themselves. Partners and children are turned into carers, and children know that they themselves have a 50% chance of going through what they see unfolding in front of their eyes—a prospect that often results in self-harm, low esteem, low confidence, low mood, anxiety or depression.

Professionals, and indeed families, can sometimes mistake Huntington’s for other conditions such as Parkinson’s or Alzheimer’s. That is especially true when the family has no idea that Huntington’s exists in their family, and those living with it face a great deal of stigma and discrimination. It is not uncommon for a loved one to be wrongly accused of being drunk or on drugs due to their symptoms. The symptoms can start at an early age, and about 5% to 10% of sufferers experience them before the age of 20, although they usually appear between the ages of 30 and 50, and some 10% of sufferers develop them after the age of 60. The average survival time from first onset of symptoms is about 15 to 20 years.

Needless to say, people living with Huntington’s and their families face extraordinary challenges in their lives because the condition affects everyone who comes into contact with it: those experiencing symptoms and their families, those who have tested positive but do not yet have symptoms, and people at risk of developing it. Even those who test negative can suffer from survivor guilt, and in some cases might be ostracised by their families.

--- Later in debate ---

[Jim Shannon (Strangford) (DUP)]

It is always a pleasure to speak in this Chamber. As the DUP health spokesperson, I wanted to add my contribution today. I congratulate the right hon. Member for Leeds Central (Hilary Benn) on setting out the case so well and on doing so from a passionate, intimate and obviously knowledgeable point of view. It was hard to listen to some of the things he said, not because he does not put them over right, but just because, when we hear the emotion in his voice, we understand that he has a very personal interest in this subject. So, again, I thank him personally, as I think we all do in the Chamber today. I just want to add my contribution and, as I always do, to give a Northern Ireland perspective.

This is a difficult subject to deal with. As the right hon. Gentleman said, this disease does not just affect the person who has it; it can potentially affect the children as well. I think that makes things harder, because if someone has any doubt whatever as to whether they carry the gene, that will impact what they do when it comes to marriage, having children and having relationships, but also what will potentially happen to them in the latter part of their life. Therefore it is important that we take the right action to make our services better, and that is what we want to try to do.

May I say what a pleasure it is to see the shadow Ministers, the hon. Members for Leicester West (Liz Kendall) and for Paisley and Renfrewshire North (Gavin Newlands), and to see the Minister in her place two days running? We are doing well here, so we are. The Minister tries extremely hard to answer the questions that we put forward, so I thank her for that. I am very pleased to see the Labour shadow Minister—a fellow Leicester City supporter—in her place. We won 3-0 last night, which was a good result. That is by the way and nothing to do with this debate; it is just for the hon. Lady and me to glory in that victory, as we do, personally and collectively.

We need to have better mental health services for patients suffering with this disease and to encourage more funding into research. The right hon. Member for Leeds Central was right about the importance of research; I will comment on research later, but he was right to mention the need for it. In a way, this debate follows on from some of the questions about research in the debate on pancreatic cancer that I secured in Westminster Hall yesterday. We have to focus on research in a deeper and stronger way, and I look forward to hearing the comments of others about what we can do for our constituents.

Health is a devolved matter for Northern Ireland and is not the Minister’s responsibility, but I want to sew a Northern Ireland perspective into the debate. I will replicate the perspective heard in the right hon. Gentleman’s comments, and talk about what we in the United Kingdom need to do in Northern Ireland, Scotland and Wales. I look forward to hearing from my friend and colleague in the SNP, the hon. Member for Coatbridge, Chryston and Bellshill (Steven Bonnar), who always makes a significant contribution on health issues.

Huntington’s services across the UK lack efficiency and funding, especially in Northern Ireland. That is not the Minister’s fault, but it shows what this is all about. One of my constituents made me aware of the fact that there are only two Huntington’s-qualified nurses across the whole of Northern Ireland—for a population of 2 million. Wow! It shocks me to the core when I read that and have to convey the situation in Northern Ireland. As a result of the right hon. Gentleman raising my awareness of this matter, I will take a deeper interest in it from a Northern Ireland perspective. I will follow this up with Robin Swann, the Northern Ireland Health Minister.

In that population of 2 million, the rate of Huntington’s has increased from 6.4 people per 100,000 in 1991 to 12 per 100,000—almost doubling over that period of time. Approximately 223 people have been diagnosed with the disease back home, leaving many with the possibility of getting it genetically. That is one of the worst things: someone could be carrying the disease without knowing—this rare condition is also known as the disease of families.

The hon. Member for Blaydon (Liz Twist), who has left her place, is the chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions. Huntington’s is a rare condition, and sometimes the symptoms are not as prevalent, making it even more essential for people to be aware of them. I would subscribe to the hon. Lady’s line of thought that this should be categorised as a rare disease: statistically, the numbers suffering from this disease are not large, and it is rare in the effect that it has. Government have a policy to deal with rare diseases, so maybe it is time to consider this as one of those, Minister.

Huntington’s Disease Association Northern Ireland has been instrumental in providing support for families—it is not all doom and gloom in Northern Ireland for the families and those who support them. The association has a lovely motto: “Families at the heart of all that we do”. That conveys the importance of what it does, bringing families together so that they can help and reach out to each other. The right hon. Member for Leeds Central referred to that point, and I would reiterate it.

The organisation offers care to loved ones and encouragement throughout the process. Not only that, but it provides hope for those dealing with Huntington’s. Currently, 15 clinical trials of different treatments are under way. We should take some encouragement from that and have hope of a cure. With 15 clinical trials taking place, there is hope that one day soon—not too far away—we will have a cure. If we have that cure, we can deal with these issues better personally.

Sorcha McGuinness of HDANI has stated that, by the late stages of the condition, people will require 24-hour care, as the right hon. Gentleman referred to. They will be unable to move, speak or sometimes even swallow. Other diseases we have spoken about, such as motor neurone disease, are similar.

[Liz Saville Roberts]

The hon. Gentleman is speaking movingly and powerfully. Members will be concerned when we hear from constituents who are being refused personal independence payments. The procedure that applicants—people with Huntington’s disease and their families—have to go through to get PIP, to which they are entitled, is almost a test of their perseverance. As MPs, many of us have to deal with these things, but there must be a better way of dealing with families affected by conditions such as Huntington’s. Given what they are likely to need and that their care needs are so great, we must find a better way of dealing with this issue.

[Jim Shannon]

I thank the right hon. Lady for her intervention, which clearly outlines another issue. It is not always health alone that is an issue; it is also about not being able to work again, as the right hon. Member for Leeds Central said. There is the financial impact on families. There is going on to benefits, which are probably alien to those applying. The system needs a wee bit more compassion for those who are under financial pressure. When they state that they have Huntington’s disease, the reality of what that means should figure in how they are helped through PIPs and other benefits. More often than not, we—elected representatives—come to an acknowledgment and knowledge of those matters through constituents who apply for PIPs. We understand a bit better what they are doing. There is one lady in my office who does nothing but benefits—five days a week. That gives Members an idea of the magnitude of this issue. The right hon. Lady is right, and I thank her for her intervention.

As the disease becomes increasingly debilitating, there is a need for more trained specialists in it. I ask again the question asked by the right hon. Member for Leeds Central, and we look to the Minister for help: what can be done, and what is being done, to increase the numbers of trained nurses? The disease affects the whole of this great United Kingdom of Great Britain and Northern Ireland, so what discussions has the Minister had, or will she have, with the devolved Administrations to ensure that there is a universal strategy for moving forward that encompasses us all?

A nurse who is qualified in Huntington’s plays a key part in the patient’s life, as the link to mental health. Physically, the patient’s body is dying—that is what is happening. Mentally, the disease affects them with anxiety, depression and all those issues. They feel it as it overtakes them and as their bodies decay. The nurse is also the link to neurology, GPs, social services and occupational therapy. I come back to the comment about PIPs made by the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts). When our staff fill in PIPs forms, we look at how occupational therapy can add aids that help patients around the house. There is only so much that can be done for Huntington’s, and perhaps other diseases, but there is a key role for the occupational therapist in helping families to deal with it, whether that means a bed downstairs, an extension to the house or a walk-in shower. At certain stages of the game, of course, those things will not help, but perhaps early on they can.

In the area covered by the South Eastern Health and Social Care Trust, which includes my constituency, patients are referred to the Belfast Health and Social Care Trust specialist nurse, and the cost is covered by the Health and Social Care Board. Patients living in the western, northern and southern trust areas in Northern Ireland have no access to Huntington’s disease specialist nurses. Some sufferers have described the condition as a vacuum of silence—that is what it is. They feel almost isolated—on their own—and they are very much dealing with all the issues without help. When people are living in complete isolation, with no assistance, it is important that there is someone they can turn to.

Although I appreciate that health is devolved in Northern Ireland, the situation unfortunately remains the same in the rest of the UK, as the right hon. Member for Leeds Central said and as others will as well. There is no equality of care, and Huntington’s disease patients still feel left behind. Through this debate and through awareness raising, we must try to address that. If the number of people diagnosed with Huntington’s disease continues to rise, the Government must review its status as a rare disease. I said that earlier on, and I say it again. Perhaps we need to move it into a priority category as soon as we can.

I look to the Minister, as I will continue to do whenever she is responsible for the answers, and to her counterparts in the devolved Administrations to initiate funding for greater care for those in the early and latter stages of the disease. We referred to those 15 clinical trials earlier. The right hon. Member for Leeds Central referred to the clinical trials and how important it is to find a cure, help that research and bring new symptoms to light.

Familial carers desperately need their loved one to have professional care, so that they can seek some respite, without being sick with worry about them. They need respite care—we say that often, but Huntington’s disease is such an all-encompassing disease that it totally takes over the life of families. That respite care has to be there to give them a half-day or even a few hours off from the 24/7 focus they have. Some indication in the Minister’s response that there will be some help with respite care would be helpful.

Contact in Care Settings

Liz Saville Roberts Excerpts

Thursday 27th October 2022 Commons Chamber

[Dan Carden (Liverpool, Walton) (Lab)]

I beg to move,

That this House has considered the matter of guaranteeing the right to maintain contact in care settings.

After much delay due to circumstances out of our hands, I am grateful that we now have the opportunity in this Chamber to debate this incredibly important issue. I thank the Backbench Business Committee for its efforts in finding us time to speak about this in the Chamber today. I also want to extend my gratitude to the hon. Members for Chatham and Aylesford (Tracey Crouch) and for St Albans (Daisy Cooper) and the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts) for their steadfast and resolute support and advocacy on this matter throughout.

People across the United Kingdom are still having to face their time in hospitals, care homes and other care settings completely alone and detached from the people they hold dearest. They are some of the most vulnerable and frail people in our society; some of them will be nearing the end of their lives. The devastating impact of this isolation and of denying contact with loved ones affects those in receipt of care and also their loved ones. It is difficult to imagine, unless we have personal experience, the anguish, pain and stress of not knowing when we will next see our loved one—our husband, wife, mother or father—and repeatedly asking ourselves, “Are they okay? Are they comfortable? Do they even know that I care?”

That same anguish and pain is experienced by the individual receiving care, not understanding why family or loved ones are not able to visit. Shirley from my constituency said:

“My father forgot I was his daughter during the period I was unable to visit. When I was finally able to visit, my dad was unrecognisable. It broke my heart. He has never recovered.”

The support and care given by partners and by parents and children is not an optional extra: contact with loved ones is absolutely vital to dignified care. This point was also made by the 363 members of the public who in the last few days alone provided written evidence for this debate, and I want to thank them for their brave contributions and the Chamber engagement team for collecting them.

Throughout today’s debate we will hear further personal experiences from across the Chamber, but I hope the House will not mind if I take a moment to talk about my own family’s experience last year. My mother and brother contributed a few words, too, and I am grateful to have the opportunity in the Chamber to express them.

My father, Mike, died last year: he was diagnosed with lung cancer in February and died in December. Like many people undergoing cancer treatment, one evening he suddenly became unresponsive and we had to rush him to A&E. At the hospital, it was confirmed that he had sepsis, and he was therefore isolated in a side room on the A&E ward, which was overrun with patients on beds or trollies in the corridor. My dad was in an A&E side room for three days, during which time he did not receive any hot food, he was not showered or washed, nor assisted to change his clothes, and he was unable to get help to go to the toilet. Instead, he was given cardboard containers which were often left full on his bed table for days despite regular requests that they be taken away and replaced. Throughout this time, he had no means of contacting us, because there was no phone signal where he was and he could not access the wi-fi despite repeated attempts.

There were other occasions: once he had to be moved to a ward, when he was left with his emergency buzzer out of his reach; and one time he could not breathe and began to panic, and he phoned my mum, who was unable to get through to the ward by phone and therefore rushed to the hospital. After these experiences he told us that he had felt so lonely and neglected, and unable to alert anyone to his basic needs, and my dad was a man who never liked to make a fuss.

The hospital policy at the time was that visitors were only allowed for patients in end of life care. The NHS website defines that as follows:

“End of life care is support for people who are in the last months or years of their life.

End of life care should help you to live as well as possible until you die and to die with dignity. The people providing your care should ask you about your wishes and preferences and take these into account as they work with you to plan your care.

They should also support your family, carers or other people who are important to you.”

However, at the time, the hospital defined end of life care differently and restricted visiting rights to those patients who were “actively dying”. In other words, they were displaying the physical symptoms of dying.

My mum said:

“This meant that instead of being able to focus on caring and supporting my husband through his final weeks, we had to battle with the hospital to see him. The trauma of my husband’s death—and in particular the neglect he experienced in his final weeks of life—remain with me. It is almost exactly one year since Mike was admitted to hospital, where he spent the last month of his life, and I am still overwhelmed each time I attempt to talk about what he went through.”

I turn to the words of one dementia sufferer, who said:

“I’d forget that I had an allergy, but my daughter was there to correct me. If alone, I would simply have said I didn’t have an allergy—that could be so dangerous.”

The lack of input from the family and friends of those receiving care—the people who know them best—leads to much worse outcomes.

In March, we invited affected constituents to an event where they could share their experiences with parliamentarians on the estate. The testimonies that we heard were harrowing, and the collective trauma was palpable. To give just one of the contributions from that day:

“Sitting with my mother’s body was the longest time I had been allowed to spend with her since she had entered the care home 16 months before.”

That powerful event left those hon. Members present united in the view that a legal right was needed to secure the right of care users to nominate an individual to provide support or care in all circumstances. Many of us at the event were disappointed by the response of the Government and the Minister for Care.

Since the event, 60 Members sent a letter to the right hon. Member for Bromsgrove (Sajid Javid), who at that point was Secretary of State for Health and Social Care, pushing for codification—a legal right to be put into law. We were again left disheartened by the Minister’s response. While we were told that the Government were committed to ensuring that care home residents had access to the support and companionship that loved ones bring, there was no answer to our request for a meeting or consideration of our proposals. Understandably, the campaign groups felt ignored once more. I hope that the Minister will not leave those affected feeling the same way.

The problem is not exclusive to the coronavirus pandemic. There are still rigid restrictions on visiting as well as shocking instances of denying contact. Another of my constituents reported:

“My family and I have never been allowed into the care home that he now resides in. Restrictions have caused unnecessary stress and anxiety to my family and I.”

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

The hon. Member is making an excellent speech. Does he agree that now is exactly the time that we should be considering this matter, because, as we go into the winter, many care settings will be considering the option of imposing restrictions, and guidance alone has proven insufficient? That is among the lessons that we should have learned over the last two years. The Government should now be acting.

[Dan Carden]

I am grateful to the right hon. Member for that intervention. The Government have previously pointed to guidance as a defence against bad practice, and we have enough evidence to show that that is not good enough. Indeed, while there are excellent examples of good practice across the sector, significant levels of uncertainty and variability throughout the system seriously undermine the rights of individuals. The guidance leads to a postcode lottery as separate settings interpret guidance differently.

That difference is compounded by the response of the Care Quality Commission, which is an organisation that many have had difficult and negative interactions with. The Government encourage those affected to report care providers who do not meet the guidance to the CQC, but by then it may be too late. The poor response is not because the CQC ignores complainants, although there was evidence of that as well, but that it simply does not have the proper powers or data to support people who have their access rights compromised. In the CQC’s own words:

“We do not have the power to require care homes to report live data on levels of visiting, neither do we have the power to take action against those care homes that are not reporting changes to their visiting status to us.”

The CQC, which regulates all health and care services in England, bases its enforcement action on the capacity tracker. However, providers are not obligated to use the tool—they are merely encouraged. That has led to very little, if any, clarity on the true extent of the problem.

By comparison, in Scotland, the National Care Service (Scotland) Bill, places a duty on Ministers to require providers to comply with any direction made regarding visiting. What assessment has the Department made of the Bill and would it be minded to introduce similar provision in England? The evidence suggests that the only way to guarantee contact in care settings is a legal right to an essential care supporter. An essential care supporter would be able to visit or accompany a person in any health and care setting to help communicate their wishes and needs, and to ensure they receive the correct care. If the Government are serious about their support for these calls, if they are serious about acting in the interests of families and loved ones, if they are serious about balancing clinical restrictions with the impact of restrictions on residents’ health and human rights, then I ask the Minister to immediately consider how to put that into law.

I cannot think of any other issue that commands such unanimous cross-party support. Indeed, as my right hon. Friend the Member for Leeds Central (Hilary Benn), who I know supports these calls wholeheartedly, said at our meeting in Parliament:

“How can anyone be opposed to this?”

There are also 35 organisations in this area who support these calls, including Mind, Mencap, Disability Rights UK and Dementia UK. The new Secretary of State for Health and Social Care, the right hon. Member for North East Cambridgeshire (Steve Barclay), has previously signalled support for this right. We are ready and willing to work with the Government to make this legal right a reality as swiftly as possible. The Joint Committee on Human Rights has also been unequivocal in its call for legislation in this area. In its report from July this year, “Protecting human rights in care settings” it stated:

“The Government must introduce legislation to secure to care users the right to nominate one or more individuals to visit and to provide support or care in all circumstances, subject to the same infection prevention and control rules as care staff.”

We have not yet had a response from the Government to that report, so may I ask the Government Minister to take that up? We have opportunities in the draft Mental Health Reform Bill and the Bill of Rights to codify this right. The Government could also introduce secondary legislation, which I know campaigners are in favour of. Will the Minister meet me, others and the affected families as soon as possible to discuss making this right as strong and effective as possible? The Government have previously said that legislative options are under active consideration, so please can the Government give much more specific detail on what that actually means?

I want to finish by paying tribute to the tireless campaigning of organisations in this area, in particular the Rights for Residents campaign group, the Relatives and Residents Association and John’s Campaign. The work of Jenny Morrison, Diane Mayhew, Helen Wildbore, Julia Jones, Nicci Gerrard and Kate Meacock has been absolutely inspirational, and they are all in the Public Gallery today watching this debate. Their dedication to this campaign has been phenomenal. I pay tribute to them. In the face of immense loss and personal grief, they have shown incredible selflessness and service to guarantee that no other family member will have to endure the pain of being denied contact again.

Families do not deserve any further delay; they have suffered enough. We must learn from this trauma and bring in legislation. I hope that when the Minister rises to give the Government’s response, she will agree and set out the steps that we can take to get this right.

--- Later in debate ---

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Diolch yn fawr iawn, Lefarydd.

My mother Nancy had a stroke sometime between Christmas eve and Christmas day at the close of 2020. There was no warning, no time to prepare for this catastrophic event. Overnight she lost her autonomy, her independence and her agency in her own life. She went into the local district hospital and was transferred from there at the beginning of January 2021 to a community hospital specialising in stroke rehabilitation. She remained there until the end of that February. She came back to live with us for a couple of months, with twice daily home carers, while I, her only child, was still able to vote here and speak in debates without having to be physically present in the House of Commons. She had to move into residential care because the period when I could balance caring and parliamentary duties came to an end.

Last November she had a fall and knocked her head. The anti-stroke medication resulted in bleeding on her brain. She was discharged from hospital back to the residential home at very short notice. Just before Christmas she fell again and broke her hip. She died in hospital four weeks later. These are the bald facts of the event. It was my mother’s misfortune to be old and in need of clinical services during the first covid winter. It was the misfortune of all of us as a family that my mother fell ill at a time when covid infection control demanded the absolute isolation of stroke patients. Many of the key workers with whom we interacted over those 13 months were extraordinary.

During the last month of my mother’s life, dementia specialist nurse Delyth Fon Thomas put me in contact with John’s Campaign. She explained to me that, in the last month of my mother’s life, family contact was a right rather than an optional favour. She was the first person in authority to mention that, and she put me in contact with Julia of John’s Campaign, who is, I am glad to say, with other campaigners here in the Public Gallery.

Look up the long list of hospitals and other organisations that have signed up to John’s Campaign. They recognise that a key family member is more than a visitor—they are a carer as much as anyone on the payroll. But, I say to Members, try to get that information volunteered to you, try to find out what your rights are, because they are not given to you on a plate. People such as Delyth confounded the cliché of monolithic public sector organisations, which may well prioritise institutional interests and risk aversion to the detriment of those services that we trust them with providing. I think that, as private individuals, many people will have had that experience.

None the less, despite Delyth’s help, I only touched my mother’s hand once during the critical six weeks after her first stroke. Yes, we could arrange to speak to her through a glass window as she sat in a hospital stairwell and we stood outside in the car park, peering in. She could not hear us—incidentally, her hearing aid had been kept in a cabinet all the while and the batteries had run out. Yes, we could phone and arrange to speak over an iPad, but she could not hear us; she could not understand us. There were no hugs.

Health authority infection policy vetoed family bonds of love as a health hazard to be minimised. Of course, at the onset of covid, we had to adapt and learn quickly about how to cope with an unfamiliar, life-threatening and highly infectious virus. We put in place measures such as lockdowns and visiting restrictions at hospitals and care homes, because that was the best that we could do; that is all we knew back in 2020. We had to learn as we went along, but have we truly learned the most important lesson of all? Treating the elderly and people with dementia as units of flesh and bone by meeting the barest minimum of their physical needs is wrong. We are social animals: take away our social support and we fail to thrive. Denying family contact causes immediate welfare harm to patients and longer-term harm to family members.

That is the context in which we must apply the abstract terminology of legislation: the Equality Act 2010 recognises the basic principle that the needs of disabled people should be assessed and reasonable adjustments made to meet those needs. People with dementia and cognitive impairments are disabled. Then there is the matter of human rights, which have been touched on. Article 2 of the European convention on human rights places an obligation on the state to secure the right to life. Article 8 protects the right to private and family life, but how these are balanced in care settings is critical, and how we shift that balance as we move along is also critical. It is also surprising that the Human Rights Act 1998 applies only to publicly funded residents in care homes.

This evidently unjust inconsistency is why the Government must step in. Why should the owners of private care homes, especially in England where local authority care is far less available than in Wales, be able to make such immense decisions, and possibly prioritise convenience over residents’ and families’ rights? Indeed, if we start from the point of view of people in need of care, the care setting itself should not depend on whether it is in the public or the private sector. If the individual has a right, that right goes with them throughout their lives—whether they be in hospital, at home or in residential or nursing care. A right is not a right if its only guard dog is guidance.

[Sir Geoffrey Clifton-Brown (The Cotswolds) (Con)]

On a point of order, Mr Deputy Speaker. I made a speech in the previous debate on the national food strategy and food security and I inadvertently forgot to declare my interest in the Register of Members’ Financial Interests as a farmer and a Fellow of the Royal Institution of Chartered Surveyors, for which I wish to apologise to this House and to put the record straight.

Covid-19 Update

Liz Saville Roberts Excerpts

Wednesday 8th December 2021 Commons Chamber

[Sajid Javid]

My hon. Friend makes an important point. There is nothing more important in our society than our children. As a nation we have, like many other nations, learned a lot during the pandemic about some of the better ways to handle the concerns around the pandemic but better protect our schoolchildren. I am happy to confirm what she has said. If there is a positive case in a child, of course that individual child would isolate like anyone else, but any contacts of that child would not have to isolate. Instead, they can take lateral flow tests, not PCR tests.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Health is devolved in Wales. We already have in place reasonable measures that reflect what needs to be done to protect our communities. If we need to do more to safeguard people’s health in Wales, can the Secretary of State guarantee that his Government will enable sufficient funding to ensure that Welsh businesses get sufficient support to do what is necessary?

[Sajid Javid]

We work very closely across the UK, and the positive output from that work has been evident throughout the pandemic, especially on vaccinations and antivirals. We will continue to work together and provide whatever support is needed.

Covid-19: Contracts and Public Inquiry

Liz Saville Roberts Excerpts

Wednesday 7th July 2021 Commons Chamber

[Fleur Anderson]

I do not know how much further investigations will cost, but that does not preclude from needing to investigate this point. We cannot deflect by looking at other investigations; we need to have an investigation into this point.

Hundreds of millions of pounds have been spent on masks that have been mothballed and on gowns that could not be used because the contracts were not good enough. At a time of public emergency, we need the Government to be excellent in their competence in contracting, and not to throw the rules out of the window and end up with these failed contracts.

Question 12: why, despite all the evidence uncovered this year, will the Government still not commit to ensuring these contracts are in the public inquiry? I hope to hear confirmation that this will happen.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

The hon. Lady is asking a series of highly pertinent questions, and I wonder whether we will receive the answers with any haste. Does she agree that we also need an urgent inquiry in Wales, where it has become apparent that almost 2,000 deaths occurred from infections that probably, or definitely, took place in hospitals and were therefore the responsibility of the Welsh Government, and that we need that inquiry urgently?

[Fleur Anderson]

Inquiries need to happen in real time, as we are learning, because we are making decisions all the time that affect our lives. There also need to be major Government inquiries, and I hope that all of this will be included in the Government inquiry to come.

The Minister made much of the Boardman review, saying, “There has been an inquiry. Don’t worry. The Boardman review has done it,” but this is my thirteenth question. It is, again, a question that I have asked before and received no answer to: does she seriously believe that the Boardman review is an independent and unbiased review, and good enough? How can she think that when Mr Boardman’s law firm has been the recipient of Government contracts in the past year, and given that Mr Boardman once ran to be a Conservative councillor—far more than just voting for one party or another? It looks more and more as if the Conservatives are set on glossing over the cronyism in their ranks, so that they can carry on as if nothing has happened.

I have two more questions, and then I will close. Question 14: when will we see a return of all public sector procurement to open competitive contracting as a default? The Minister said that emergency procurement procedures are still continuing, but they do not need to anymore. We need a way of having a contract in good time but with all the open competitiveness that the public need to see. There is no justification for the continuation of emergency procedures. They should be wound down immediately, and ways found to make contracting work without being secretive.

Finally, my fifteenth question: where is the Chancellor of the Duchy of Lancaster to answer these questions? The Cabinet Office is responsible for overseeing transparency across Government, and these are the fundamental questions that we have today. Why has he once again dodged an opportunity to explain the decisions made by his Department? Will he ever take responsibility and stop getting other Ministers to do his explaining for him, as has happened in many previous debates on this issue? The public will not stop asking these questions. We on the Opposition Benches will not stop asking these questions. We need some answers.

I have a lot of sympathy for the Minister, who will have to field some incredibly difficult questions about serious allegations. When such debates come up I can imagine that the conversation that Ministers have about who will reply is not a pleasant one. There are some very serious allegations, and I hope to hear the answers this afternoon.

UK Rare Diseases Framework

Liz Saville Roberts Excerpts

Wednesday 24th March 2021 Westminster Hall

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC) [V]]

I, too, extend my congratulations to the hon. Member for Blaydon (Liz Twist) on securing the debate and my gratitude to the Minister for the extra time.

The devolved nature of health and the need for proper planning and co-ordination between the nations of the UK have been brought into sharp focus as a result of the covid-19 pandemic. For people living with rare diseases, planning and co-ordination within health systems is key, as they face additional barriers to receiving a diagnosis and treatment, compared with those people who are suffering more common illnesses. In Wales, around 175,000 people will be affected by a rare disease at some point in their lives. A Welsh action plan that commits to proper joint working and collaboration between the four nations will be imperative in ensuring the best outcomes for people living with rare and genetic conditions in Wales.

That should involve data sharing between Wales’s Congenital Anomaly Register and Information Service and other rare diseases registries in the UK to help researchers identify non-genetic rare diseases that are not picked up through screening and genomic testing. It would also involve better cross-border co-ordination for care and treatment between Wales and the other nations, including education for clinicians and healthcare staff.

There is a question as to how the Welsh plan will integrate with health entities with a UK-wide remit, and challenges associated with decision making. I urge all national Governments to commit to publishing their action plans within 2021 so that we avoid delays in implementing the framework, to ensure that there is equitable treatment for those living with rare conditions.

I would like to mention my constituent Mark Edwards of Llanegryn, who has proved to be such an excellent ambassador for PKU, and to add my voice to the call for wider licensing of Kuvan.

[Mrs Maria Miller (in the Chair)]

We now move to the Front-Bench speeches. I call Marion Fellows.

Women’s Health Strategy

Liz Saville Roberts Excerpts

Monday 8th March 2021 Commons Chamber

[Ms Dorries]

Parity between physical health and mental health is a priority in the Department for Health and Social Care. This is about breaking down taboos and stigmas. That is why we have invested £2.3 billion, year on year, into mental health and into the development of a long-term plan. That is why we had another £500 million allocated at the spending review a few weeks ago. That is why we allocated £79 million of that on Friday to dealing with the very issues my hon. Friend has just raised. When we talk about a call for evidence for a women’s health strategy, I hope it is understood that we are talking about both physical health and mental health. I thank my hon. Friend for his question; it is important that such issues are raised as often as possible.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC) [V]]

I, too, welcome the launch of this call for evidence today, on International Women’s Day. The consultation refers to evidence that female-specific health conditions can affect women’s workforce participation. However, the welfare system does not currently provide adequate support for many such conditions. For example, statutory sick pay is available to an employee only for a linked period of sickness for a maximum of three years, which penalises those people—women, of course—with chronic long-term conditions such as endometriosis. Will the Minister commit to the women who come forward with evidence that she will work with the Department for Work and Pensions to resolve those issues?

[Ms Dorries]

I thank the right hon. Lady for her question. If women are giving evidence that substantiates the points that she has just made, we will take it and provide it to the DWP. It is not the case that we would not do anything with that evidence; we absolutely will share it with other Departments.

Covid Security at UK Borders

Liz Saville Roberts Excerpts

Monday 1st February 2021 Commons Chamber

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC) [V]]

It has taken over a year for the Government eventually to implement a limited form of quarantine at the borders—a glacial pace of decision making that we can ill afford as the pandemic continues. The recent announcement was yet another half-measure and an all-too-familiar fudge of a thing—half-done, and that badly.

The evidence, of course, speaks for itself. Countries that locked down comprehensively and promptly have so far had better covid-19 outcomes. The Prime Minister’s “softly, softly” approach prompts the question: whose interest does this Government serve? His alignment with select business interests has distorted public health efforts from the start, from the billions spent on dodgy private procurement contracts to the ill-fated eat out to help out scheme, which helped to raise the tide of the pandemic into the second wave.

Despite the great effort of the people of the four nations to endure another testing lockdown, the Prime Minister sees fit to allow most travellers to enter the UK without undergoing strict quarantine measures, overruling in the process the wishes of both his Home and Health Secretaries. This policy ignores the risk posed by people arriving from overseas while carrying existing variants from non-high-risk countries, and there is no guarantee that this approach will safeguard against other variants emerging in non-high-risk countries.

Not only are the new measures weak in their practical application, but they are morally weak as well. It was of course Edmund Burke of the Conservative party who first coined the phrase “geographical morality” to describe the impunity with which the British elite acted abroad in countries under the yoke of the British empire in the 18th century. Under the new broader measures, that concept has been reversed. It is now business leaders and the rich from both home and abroad who can act with relative impunity, free to travel in and out of the UK while the majority of us live on under strict lockdown. The Government cannot shake their commitment to the ideology of hyper-individualism. Whenever possible, they prioritise the liberty of predominantly wealthy individuals above the common good, stubbornly ignoring the truth that covid-19 has laid bare for all to see: the deep interconnectedness of our society and the planet.

As has been the case since the beginning, these measures are part of a wave of blinkered wishful thinking set once again to come crashing down on the rocks of reality. That reality being that the virus has no interest in notions of individual liberty, and these futile attempts to apply quarantine measures selectively equally mean nothing to the virus. Only strict quarantine for all arrivals and proper support for hospitality and business will see us safely through.