Prisons in Wales

Debate between Liz Saville Roberts and Jim Shannon
Wednesday 29th November 2023

(11 months, 2 weeks ago)

Westminster Hall
Read Full debate Read Hansard Text Read Debate Ministerial Extracts

Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.

Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.

This information is provided by Parallel Parliament and does not comprise part of the offical record

Liz Saville Roberts Portrait Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
- Hansard - -

I beg to move,

That this House has considered prisons in Wales.

Diolch yn fawr iawn, Cadeirydd—thank you very much, Mr Gray. I am pleased to have secured this debate, which is based on a report by the Wales Governance Centre at Cardiff University. I sincerely thank colleagues at the university, the justice unions and the probation development group for their contributions. I must put on the record my role as joint chair of the justice unions parliamentary group.

Dr Robert Jones of the Wales Governance Centre has told us time and again that Wales has the highest imprisonment rate in western Europe. Nothing has changed in the latest set of figures, and I think that matters. When offenders leave prison, they return to our communities, and the criminal justice system has a duty of care to everyone in those communities to reduce reoffending and ensure that returned ex-offenders are healthier and better able to find work, and that they are released from prison to somewhere with a roof over their heads. Too often—I have come across constituents in this situation—ex-offenders are released to live in tents, cars and vans. I think we know how ineffective that is in helping people to rehabilitate and in the prevention of reoffending.

Wales has the highest imprisonment rate in the UK, in terms of both in-country and home-address rates. In-country means, of course, those who are held within the borders of a country. In September this year, 177 people were held in prison within the borders of Wales for every 100,000 of the population. By contrast, the number is 146 in England and Scotland and 100 in Northern Ireland, so there is a striking difference across the four nations of the United Kingdom. It is also striking that we have the England and Wales jurisdiction; in Scotland and Northern Ireland, the management of justice and offenders is devolved.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- Hansard - - - Excerpts

I commend the right hon. Lady for securing this debate. I spoke to her beforehand, and although I know the debate is about the prison system in Wales, she gave some stats for Northern Ireland. I understand what she is going to ask for, so may I, through her, ask the Minister for whatever is done in Wales to be done in Northern Ireland? I know he is always responsive to requests, and it is important that we have co-ordination of legal systems across the whole of the United Kingdom.

James Gray Portrait James Gray (in the Chair)
- Hansard - - - Excerpts

Order. Interventions must be brief.

Cancer Medicines: Appraisals

Debate between Liz Saville Roberts and Jim Shannon
Tuesday 13th June 2023

(1 year, 5 months ago)

Westminster Hall
Read Full debate Read Hansard Text Read Debate Ministerial Extracts

Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.

Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.

This information is provided by Parallel Parliament and does not comprise part of the offical record

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- Hansard - - - Excerpts

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 Portrait Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
- Hansard - -

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 Portrait Jim Shannon
- Hansard - - - Excerpts

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.

Devolution of Justice: Wales

Debate between Liz Saville Roberts and Jim Shannon
Tuesday 29th November 2022

(1 year, 11 months ago)

Westminster Hall
Read Full debate Read Hansard Text Read Debate Ministerial Extracts

Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.

Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.

This information is provided by Parallel Parliament and does not comprise part of the offical record

Liz Saville Roberts Portrait Liz Saville Roberts
- Hansard - -

Again, I will return to that. This is not just a matter of serving the needs of Wales. Sending thousands of prisoners miles away from home—men or women—does not serve the vast majority of those prisoners well either. If we want a joined-up magic connection with housing, work and maintaining kinship, family and friendship connections, which we know are the routes to successful rehabilitation, we should not send prisoners hundreds of miles away from where they will return, because those links will not be made, be they back home in Wales or in communities in England.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- Hansard - - - Excerpts

I am encouraged by what the right hon. Lady said. When we look across this great United Kingdom of Great Britain and Northern Ireland, there are two examples of where it has happened: Northern Ireland and Scotland. Surely those are examples of what has worked, and Wales should have the same opportunity as Northern Ireland and Scotland for the benefit of those in Wales.

Liz Saville Roberts Portrait Liz Saville Roberts
- Hansard - -

I am grateful to the hon. Gentleman for his intervention, and I am honoured that Members from across parties are pointing out the inconsistency that we are experiencing in Wales.

The UK Government’s prison population projections from 2021 to 2026 anticipate that prisoner numbers in the England and Wales conglomeration will rise to 98,500 by March 2026. Those are extraordinary figures. As part of that increase, the Ministry of Justice anticipates that the number of adult female prisoners in England and Wales will increase by over a third—36%. Disaggregated data from Wales shows that the number of Welsh women in prison will likely increase from 227 to 308. Therefore, the provision that is being planned now for south-west Wales, although welcome—even to those of us who disagree that that number should be arriving in the system—is highly unlikely to deal with the numbers we are anticipating to arrive in the system.

Under the plans that took effect in May, the maximum prison sentence that can be handed out by magistrates has increased from six months to a year, which is also expected to contribute to a rise in prisoner numbers. Disaggregated sentencing data shows that the average custodial sentence length for women sentenced in Wales already increased from seven months in 2017 to 13.6 months in 2021. Although 23% of the Welsh female prison population was serving sentences of four years or more in 2019, that has increased to 29% in 2021. How does that align with the Welsh Government’s stated aim to reduce the number of Welsh women in prison? The answer, of course, is that it simply does not because there is no direct link between the very worthy policy, which most of us support, and the means to bring it about.

I am pleased that the UK Government are working with the Welsh Government to establish a pilot women’s residential centre in Wales as an alternative to custody, and my probation service in north Wales is doing very good work to the best of its ability on the ground, but the policy and structure that we have in place hinder it. In truth, the number of women supported will be small and focused in very specific areas of Wales. Therefore, my second question to the Minister is: given that overall incarceration of women from Wales will increase, does he honestly believe that to be coherent policy making for women in the criminal justice system in Wales? Particularly since the autumn statement, it looks likely that Departments such as the Ministry of Justice will have less capital money to spend in the long term. I wonder where that leaves the development of multiple women’s residential centres across Wales.

Another issue that shines the cold light of reality on the jagged edge is housing. Housing and the responsibility for preventing homelessness lie, as we all know, with the Welsh Government, and have done so for 22 years, but the policy aim is not properly aligned with the Westminster-controlled criminal justice system at present. The removal of priority need for prison leavers in the Housing (Wales) Act 2014 was driven by several factors, including low levels of housing stock and pressures on hard-working local authority staff in finding accommodation for prison leavers. It was, however, in part due to the inability of the Welsh Government to control or even influence the upstream factors that affect the rate and timing of demand for housing prison leavers. Even though prison leavers still get let out of prison on Fridays, they get no support at the weekend. The outcomes of that need proper scrutiny.

Those factors include the rapid rise in prison leavers from an ever-expanding prison population, the long distances from home addresses, which reduce the likelihood of prison leavers being able to receive support services, and the fact that Welsh prisoners are widely dispersed across England, making it hard to know when and where the demand will arise when they return to Wales. The same facts apply equally to English-address prisoners held in Welsh prisons. This is not looking at the justice experience just from a Welsh perspective but as a totality.

Huntington’s Disease

Debate between Liz Saville Roberts and Jim Shannon
Wednesday 9th November 2022

(2 years ago)

Westminster Hall
Read Full debate Read Hansard Text Read Debate Ministerial Extracts

Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.

Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.

This information is provided by Parallel Parliament and does not comprise part of the offical record

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- Hansard - - - Excerpts

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 Portrait Liz Saville Roberts
- Hansard - -

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 Portrait Jim Shannon
- Hansard - - - Excerpts

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.

Labour and Skills Shortages: Temporary Recovery Visa

Debate between Liz Saville Roberts and Jim Shannon
Tuesday 8th November 2022

(2 years ago)

Westminster Hall
Read Full debate Read Hansard Text Read Debate Ministerial Extracts

Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.

Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.

This information is provided by Parallel Parliament and does not comprise part of the offical record

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- Hansard - - - Excerpts

Thank you, Mrs Cummins. You caught me out, because I was not expecting to be called; I was just doing my duty of jumping up and sitting down again. You are most kind. I congratulate the hon. Member for Westmorland and Lonsdale (Tim Farron) on setting the scene for the debate. The Minister probably knows what I will ask in relation to the fishing sector, because I asked him last week after the debate; his Parliamentary Private Secretary, the hon. Member for West Bromwich West (Shaun Bailey), was there as well. I have sought a meeting with the Minister and he has agreed to it, so hopefully we will have that in the diary over the next period of time. I will specifically focus on that and explain why it is so important, and reflect on my meetings with the previous Minister, the hon. Member for Torbay (Kevin Foster), and how we move forward on the issue.

One UK sector that most people agree has a bright future following Brexit is our fishing industry. Located in often remote coastal communities, the industry has weathered many challenges over many years, including those that are unique to the sector. The fishing fleet based in Portavogie, in my constituency, probably had its heyday during the second half of the ’70s and into the ’80s. Good profits were made and shared with the crew, which reflected the hard work and long hours that fishermen put into their profession. My brother is one of them; he worked the fishing boats in Portavogie over a period of time. I could never understand how the guys could get into the fishing boats, never mind get out of them, but that is by the way. It is a dangerous profession. Being a fisherman carried with it a great deal of pride, but something went wrong. Fisheries management policies were applied that undermined the industry; with hindsight, it is debatable whether those policies were right or wrong. Nevertheless, the policies succeeded in reducing most crew wages. Combined with alternative occupations, this led to a situation developing in the 1990s where there were more crew vacancies than there were crew to fill them. That is a wee bit of background about the sector before I put forward some ideas.

Fishing vessel decommissioning schemes released some crew who found positions in other fishing vessels. At that time, it was migrants from eastern Europe who, although inexperienced in commercial fishing, offered a breathing space when they were recruited to fill the crewing gaps. Then, trawler owners from Portavogie, Kilkeel and Ardglass followed the lead of owners elsewhere in the UK by beginning to recruit new crews from overseas. Those crews were Filipinos, who became a very important part of fishing for nephrops in the Irish sea and the Clyde.

The fishing fleet has never pretended that overseas crews offer a long-term replacement for domestic recruits. I understand exactly that it is not a long-term solution, but it is a short-term solution. It would be great if young people from my constituency were going into fishing, but they are not, and neither are young people from Kilkeel or Ardglass. The hon. Member for Glasgow North East (Anne McLaughlin) will speak for Scotland shortly, and the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts) will speak for Wales. I think both of them will endorse that point.

Overseas crews have filled critical roles, which has kept a large part of the UK’s fishing fleet at sea and, in turn, maintained supplies of domestically caught seafoods to markets at home and overseas. Overseas fishing crews have largely been recruited to the UK on the basis of transit visas. I understand that transit visas were never intended for that purpose. Transit visas permit a crew member to join a vessel that is departing the UK and working outside UK territorial waters. It has generally been accepted that the majority of time on a fishing vessel at sea has to spent beyond the UK’s—

Liz Saville Roberts Portrait Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
- Hansard - -

One fishing practice that the Minister might propose is for those vessels to keep their foreign-originating crew offshore, beyond the 12 miles of territorial waters, but that is both dangerous and inhumane.

Jim Shannon Portrait Jim Shannon
- Hansard - - - Excerpts

The right hon. Lady illustrates the issue very clearly, as well as the concerns that we have. I think there are solutions that all of us here can support. I suspect that, besides fishing vessel owners, many ship operators would find the 12-mile limit challenging, as she mentioned. That is certainly not a new issue.

For well over a decade, the fishing industry has sought to engage with the Home Office to resolve the ambiguities around the matter. Ten years ago, a concession was granted: the option to move crew on to work permits. That was not widely taken up. The situation has changed again, not least because EU crew have left the industry, so there is a dependence on non-UK and non-EU crew.

Geographically, areas such as the Clyde have nowhere outside 12 miles. I am told that, towards the end of 2021 and early 2022, staff from Border Force visited Campbeltown, where they reminded fishing vessel owners about their roles, and effectively told the owners that overseas crew would have to go home. As a result, boats have been tied up and some have been sold. On 20 August, Border Force visited the fishing community in Mallaig and delivered a similar message to the one that was heard in the Clyde. A virtual meeting was held with industry representatives in Northern Ireland on 15 September.

I arranged a meeting with the previous Minister, the hon. Member for Torbay, and we discussed concessions granted to other marine operators, specifically those engaged in the construction of offshore wind farms and the owners of well boats. The latter are largely Norwegian-owned ships that transport fish between salmon farms in the west of Scotland, which are all within the 12-mile limit. Will Minister tell us the difference between a well boat carrying salmon smolt inside the 12-mile limit and a trawler carrying prawns in the same area? I do not quite understand that, but if we have a meeting, perhaps we can develop that argument constructively and find a solution. For me, it is all about solutions. It is never about the negativity; it is about the solutions. It is about what we can do to make it better. We ask the Minister for that meeting.

The industry is indebted to the Minister of State, Department for Environment, Food and Rural Affairs, the right hon. Member for Sherwood (Mark Spencer), for his early intervention with the Home Office on this matter. A six-month window has been agreed during which trawler owners are encouraged to pursue the sponsorship route for fishing crew, and the industry is working on that. Although that avenue is being pursued by some, questions are being asked about its applicability to the fishing fleets, especially in respect of the Government’s immigration targets.

Fishing vessel operators accept the need for a scheme that is transparent, complies with international law and affords protection to all fishing crew, especially those from overseas. There is no question about what they are trying to achieve. Fishermen and fisherwomen are skilled professionals, as the Government recognised in early 2021, following a recommendation from the Migration Advisory Committee. However, despite the committee’s further advice that deckhands be added to the shortage occupation list, the then Home Secretary declined to approve the recommendation, and stated that more time was needed to examine the impact of the covid pandemic on UK employment levels. Again, I honestly believe that the fishing organisations that I and other Members represent have a working solution. The Minister’s PPS, the hon. Member for West Bromwich West, is not involved in the debate, but he knows that only too well, so he knows what I am going to say. I also note that it is accepted that skills can differ across the professions on the Government’s shortage occupation list, with one being English language fluency. However, the same standard of English is required across all occupations, which is something that we urgently need to examine.

I am nearly finished and am going really fast—I hope Hansard can follow my flow of words. The hon. Member for Vauxhall (Florence Eshalomi) says that Jim Shannon gets more words to the minute than any other MP, and today may be one of those occasions.

Leaving the EU creates opportunities for our fishermen, yet they are still competing with EU fishermen. The Home Office’s refusal to engage with the fishing industry and consider a bespoke or flexible approach to the issues around overseas crews compares less than favourably with the approach taken by others, such as the Dublin Government. In Ireland, a partnership approach has recently resulted in a new policy being unveiled. When we meet the Minister, we might be able to share this example, which is a constructive one. Less than a month ago, on 11 October, the Irish Government approved the publication of the “Review of the Atypical Scheme for non-EEA crew in the Irish Fishing Fleet”. The report and its recommendations followed an extensive consultation process, with stakeholders involved in the scheme. It is that kind of collaborative approach that needs to be pursued by the Home Office, instead of trying to squeeze the square peg of the fishing crew into the round hole of the sponsorship route. A square peg in a round hole really does not work.

The fishing industry remains focused on creating an economically viable sector that will offer financial rewards in order to reflect the hard work that the fishing sector does. After decades of challenges, that ambition will not be met overnight, which is why officials need to work with the industry to develop a visa system that allows skilled overseas crew to pursue their professions on UK fishing vessels in a controlled, transparent and law-abiding way. That would allow our fishing industry to develop its full potential, benefiting the economic life of our coastal communities as well as the whole of the United Kingdom.

What I have said today about Northern Ireland is reflected for our fishermen in Scotland, Wales and England, and I honestly believe in my heart that we have a solution. I know the meeting last week was about a different thing, but none the less I took the opportunity to appeal to the Minister’s good nature and will. I hope to have a meeting shortly, so that collectively we can move forward together in a partnership fashion and solve this problem. If we can do that, it will be a big day.

Small Breweries Relief

Debate between Liz Saville Roberts and Jim Shannon
Monday 9th November 2020

(4 years ago)

Commons Chamber
Read Full debate Read Hansard Text Read Debate Ministerial Extracts
Liz Saville Roberts Portrait Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
- Hansard - -

Diolch yn fawr iawn, Ddirprwy Lefarydd.

I, like the vast majority of Members of this House, am proud to speak up for the excellent independent breweries of my constituency. These include inspiring beers from Cwrw Llŷn of Nefyn, Cader Ales in Dolgellau, and Porthmadog’s Mŵs Piws—which I imagine does not need translating as Purple Moose—as well as Myrddins Brewery and Distillery of Barmouth. Other bragdai bach of the county of Gwynedd include Bragdy Lleu in Penygroes, Snowdonia Brewery of Waunfawr, and Cwrw Ogwen in Bethesda.

This debate is not intended to be a language lesson, but I think Members will know the meaning of the words “cwrw” and “bragdy” when we have finished. The word “bragdy” is very similar to “brewery” because it is the same thing. “Cwrw” is an old Celtic word—Welsh word—meaning beer, but Members may recognise it from other places with words such as “cerveza”. There is a real pedigree to these words. I will not indulge myself any further, because given half a chance I will.

All in all, Wales is home to about 90 independent breweries. However, these small breweries have to hold their own against the global beer companies that dominate the pub handpulls, the bar taps and the supermarket shelves. The small breweries relief scheme was launched in 2002 to allow them to compete and to compensate for lack of market access. It gave independent breweries a fighting chance to get their beers out to a public thirsty to taste something new and different.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- Hansard - - - Excerpts

I am very pleased to see how many people have arrived in the Chamber, so there is a common denominator that brings us together. I congratulate the right hon. Lady on bringing this debate forward; she does so well in doing so. With one in eight staff in the pubs and breweries industry already having been made redundant so far, does she agree that any relief scheme must include an extension of business rates holidays, with consequentials for the Northern Ireland Assembly and the other devolved Administrations to do the same, as with other areas? This must be extended to suppliers and to their business premises. These companies can continue to produce but have no market to sell to. There really needs to be something done, and we look to the Minister to give us the response that we are after.

Liz Saville Roberts Portrait Liz Saville Roberts
- Hansard - -

It is of course an honour to be intervened upon by the hon. Gentleman. I really appreciate his intervention, and I will touch on that matter further. In the time in which we find ourselves, our breweries have been affected as much as the pubs that have been closed, and the pubs have received considerably more support than the breweries in the difficult recent months.

Commission on Justice in Wales

Debate between Liz Saville Roberts and Jim Shannon
Wednesday 22nd January 2020

(4 years, 9 months ago)

Westminster Hall
Read Full debate Read Hansard Text Read Debate Ministerial Extracts

Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.

Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.

This information is provided by Parallel Parliament and does not comprise part of the offical record

Liz Saville Roberts Portrait Liz Saville Roberts
- Hansard - -

Exactly. Lord Thomas identifies the discrepancies in cost and how much a local citizen contributes to justice in Wales. When I talk about justice being good and fair, I am describing the situation more than 1,000 years ago, not in the present day.

The legal system of Hywel Dda covered the law, procedure, judges and the administration of the land. It was notable for being based on retribution rather than punishment, for its pragmatic and arguably more compassionate approach than that which we now experience, and for granting higher status to women than most contemporary legal systems. Following the Acts of Union, of course, Welsh law was officially abolished and Wales as a legal jurisdiction ceased to exist.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
- Hansard - - - Excerpts

I congratulate the right hon. Lady on securing the debate. While the debate is focused on justice for Wales, the same argument applies in Scotland or Northern Ireland. There are differing laws. Does she agree that it is essential that regional laws are fully considered when the Government introduce legislation centrally in Westminster and that the Government need to work with the regional Administrations to achieve the goal that we all wish to see?

Liz Saville Roberts Portrait Liz Saville Roberts
- Hansard - -

I agree with the hon. Gentleman. There is a sense that we can learn from and compare with the other nations within the United Kingdom, if we have the information and the means to act upon that. That is invaluable for each of those nations.

In the last 21 years of devolution, the power of our National Assembly has expanded and its confidence as an institution has grown. Now, in 2020, Welsh Government policy made in that Assembly has a greater impact on the lives of the people of Wales than ever before, yet extraordinarily my country still operates without a corresponding legal jurisdiction, despite having a full law-making legislature, its own Parliament, the Senedd.

In the broader sense, that means that while devolution divergence is expanding Wales-specific legislation, it is being enacted without the underpinning structures of jurisdiction. That creates a jagged edge, duplication, a lack of accountability, additional costs to the citizen without transparency, and confusion. As the commission’s report says, the people of Wales both need and deserve a better system. Justice is not an island; it should be truly integrated into policies for a just, fair and prosperous Wales.

I hear myself using these abstract words, but of course justice is not an abstract concept; it is put into action or it does not exist. It is put into action through a range of agencies—education, social services, health and housing—all of which are devolved to the Senedd. Does that matter? Yes, it does. Bingham’s first rule of law is that the law must be accessible and, so far as possible, intelligible, clear and predictable. That simply is not the case in Wales in the 21st century.

The commission’s report is comprehensive, but today I intend to concentrate on three areas: criminal justice, family justice and legal aid. There are not many other areas that are worthy of more attention, but I urge that we have further discussion, because this problem will continue to be exacerbated. It is serious, given people’s experience in Wales.

On criminal justice, the report states:

“If criminal justice is to be effective, most particularly its treatment of victims, in policing and in the administration of the sentences of the courts (the principal role of the prison and probation services), it must be closely integrated with services which are the responsibility of other parts of local, devolved and central government—for example, health, drug and alcohol misuse, housing, education, employment, accessing benefits and managing debt and other welfare services.”

That, again, is the jagged cutting edge of justice. Whether a criminal reoffends or not is, of course, that individual’s responsibility, but that does not absolve the state of any responsibility as the provider of justice. If the state’s criminal justice system has contributed to the breakdown of family bonds, the release into homelessness, a failure to grasp the opportunity to address health issues such as addiction, and the likelihood of unemployment implicit in the toxic combination of low skills and a criminal record, what has it achieved, save to tighten the vicious circle of criminality?

I want to mention the case of Conner Marshall, whose inquest concluded last week. I pay my respects to Conner’s parents, Nadine and Richard, for their courage and perseverance in seeking justice for their son, and to my colleague and friend, the late and dearly missed Harry Fletcher, who supported the family in their search for answers. Conner was only 18 when he was murdered by a violent serial offender released on licence and on the books of community rehabilitation company Working Links.

Last Friday, the coroner in the inquest into Conner’s murder said that the probation caseworker of Braddon, the offender, was “overwhelmed” and

“essentially left to her own devices”

in what is an extremely challenging job at the best of times. Conner’s murderer had missed eight probation appointments, six of which were sufficient to return him to prison. The coroner—this is important—noted that that was not the fault of the probation officer. She had a case load of 60 offenders and was new in her post. Rather, Conner’s death was the collateral result of a failed social experiment—an ideological concept put into action by a Conservative Secretary of State for Justice in the belief that the profit motive of private enterprise can be trusted with a public good. Who would ever suspect that private companies might interpret contractual payment targets to reduce criminal acts by the simple means of seeing, hearing and recording no such acts? Clearly not the right hon. Member for Epsom and Ewell (Chris Grayling). It is to the credit of the former Secretary of State for Justice, David Gauke, that he recognised the abject and costly failure of the transforming rehabilitation programme, and that Wales led the way in bringing probation back into public control with the new National Probation Service of Wales.

The case of Conner Marshall revealed how difficult it was for his family to get to the root of the circumstances leading up to and following their son’s tragic death, but the lack of hard data about the crime and offenders in Wales, disaggregated from the wider England-and-Wales picture, was also an issue for the commission. The crime survey for England and Wales warns that separate estimates for Wales are subject to sampling volatility and variability, and that extreme caution should be taken in interpreting figures under the present reporting arrangements when trying to extract Wales-specific data. I am glad to note, however, that CSEW intends to produce Wales-specific estimates for the first time this summer.

Additionally, it is distressing to note that the then Secretary of State for Wales effectively enforced a veto by insisting that all requests from the commission to UK Ministers and entities had to be passed by him. That caused a significant delay to the commission in receiving evidence, which the commission itself expressed. Indeed, in May 2019 he said that he

“did not think it would be appropriate for UK Government Ministers or officials to give evidence on reserved policy to a Commission established by a devolved administration.”

Such high-handedness does not engender confidence that the needs of the citizens of Wales were foremost in his mind.