Duchenne Muscular Dystrophy

Chris McDonald Excerpts

Thursday 12th June 2025 Commons Chamber

[Chris McDonald (Stockton North) (Lab)]

I thank the Minister for what I think is her triple shift at the Dispatch Box today.

A few months ago, I met three really great young lads—Benjamin, Eli and Jack. We had a great conversation, and they had me laughing and joking along with them for a very long time. I slightly disappointed Eli when I first opened my mouth because, listening to me, he recognised where I was from, and he asked if I could introduce him to Sam Fender. The north-east is quite small, but I do not know everyone, and I could see the disappointment on his face. One of the things we talked about was what they want to do in the future. Eli is considering being a musician, and Jack said he would like to do something involving public speaking or, who knows, even be a politician. It was really great to see that level of ambition, but for me it was tinged with sadness; I knew that they were unlikely to realise their ambitions, because Benjamin, Jack and Eli are unlikely to see their 30th birthdays.

Benjamin, Jack and Eli all have Duchenne muscular dystrophy. It is a disease that affects only boys, and about 100 baby boys are born with it every year. Diagnosis is normally at the age of three or four, and at that moment the parents find out that their son has a life-limiting condition that cannot be treated, and that he will probably need a wheelchair by the age of 12 and a ventilator by the age of 20. There is no cure for Duchenne muscular dystrophy, but there is hope now with a new drug called givinostat.

Givinostat was developed by an Italian company, Italfarmaco, and it is an example of the brilliance of our UK life sciences sector that it decided to develop the drug here in the UK. As it has been trialled here, Italfarmaco has given the national health service a unique option to prescribe givinostat through an early-access programme entirely free of charge. The NHS can offer this drug to boys in the UK completely free of charge, and the early-access programme has been available since November last year. Members might think that such an opportunity would be seized quickly by the NHS, but sadly it has not been. Many families have had their hopes raised, only for them to be dashed when they find that they cannot access the treatment. Patients, families and charities are now calling for urgent access to givinostat, as are many Members of this House.

My constituent Tracy is one of the many who have been fighting for their child’s right to live, and for the treatment that has been proven to slow down the progression of Duchenne. Her son, Tom, is 14 years old, and she tells me that he is deteriorating. Givinostat has market authorisation for all boys with Duchenne over the age of six. It has been proven to slow its progression in clinical trials. It is not a cure—the families realise it is not a cure—but it could help boys and young men to keep walking and use their muscles for longer.

[Graeme Downie (Dunfermline and Dollar) (Lab)]

Like my hon. Friend, I have a constituent, Jamie Tierney, who, sadly, suffers with Duchenne muscular dystrophy. Recently, he has been able to begin treatment, as have other patients in Scotland, but it took a lot of work and in some cases intervention by lawyers to get that. Jamie’s family tell me that “Time is muscle”. Does my hon. Friend agree that the sooner we make givinostat available across all parts of the UK, the better it will be for those people?

[Chris McDonald]

Yes, I do agree with that very timely intervention. In fact, the slogan of Duchenne UK is “Time is muscle”, and it is absolutely right that every day and every week makes a difference to these boys.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing forward this debate. He and I spoke about it the other day. I have some constituents who have had a brave few years with Duchenne muscular dystrophy. The problem is that the opportunity of this drug has never been there for them, but it needs to be. Up until now in Northern Ireland, Duchenne treatment has included corticosteroids, physical therapy and other supportive therapies, while access to newer treatments, such as vamorolone or givinostat, are being worked on—we in Northern Ireland have not had access to them either. It seems to be almost a postcode lottery. Does he agree that these drugs could give those young boys a life-changing opportunity that they would never have otherwise, and that, with great respect to the Minister, the Government need to move and ensure that they all get these drugs?

[Chris McDonald]

I thank the hon. Member for that intervention. I am very pleased that he has intervened and I think the comment about a postcode lottery is exactly right. I noted, when I looked at the figures, that currently the Belfast health and social care trust is not offering the drug to lads in Northern Ireland, because it is claiming that it will cost £309,000 for 13 patients. That is different from the rest of the country by an order of magnitude, so I would be grateful if the Minister looked very carefully at the situation in Northern Ireland.

[Freddie van Mierlo (Henley and Thame) (LD)]

I thank the hon. Gentleman for securing this debate. I have been engaging with the Oxford NHS trust, which is not yet providing givinostat to boys in Oxfordshire. Its own business case suggests that it would cost less than £2,000 per boy and £66,000 in total for the 35 boys. Clearly, as a country, we should be able to afford such a sum. Does he agree that a hospital that wants to be world-leading should be providing it? Does he further agree that this is exactly the sort of thing we need Government intervention on, so that these boys can get treatment as soon as possible?

[Chris McDonald]

I do agree. I recognise the figures from the Oxford university hospitals NHS foundation trust. It is quoting around £2,000 per lad treated, which I understand is very similar to other areas of the country. I see that as quite a small amount of money for the 35 lives that could be saved.

Despite, as we have heard, givinostat being available for more than seven months, there has been a very inconsistent approach across the UK. A very small number of ambulant people living with DMD have so far received the treatment, and no non-ambulant boys have been treated with it yet.

[Cat Eccles (Stourbridge) (Lab)]

I, too, thank my hon. Friend for securing this important debate. I met a family in my constituency whose son is suffering with Duchenne. He is at that key stage right now where he still has his mobility, but he is starting to lose it. Does my hon. Friend agree that, as the campaign says, time is muscle? If we act now, we can prevent further deterioration of his mobility.

[Chris McDonald]

Yes, my hon. Friend is absolutely right about that. Time is muscle, as she says. Sadly, because the drug is currently only available, in the areas where it is available, to lads who are ambulant, the waiting time has meant that some lads out there who would have qualified for the drug now no longer do so. That is, frankly, heartbreaking. Of course, the use of one’s legs is not the only thing people are concerned about. We need to be able to use our arms to be able to dress ourselves, feed ourselves and brush our teeth, and givinostat could help with that.

It is very disheartening that while coping with all of this, families, parents and carers and so on are having to fight for access to the drug on a trust by trust basis. They have done that with the support of all the Members in the Chamber tonight. I am very grateful for the fact that they have turned up, because I know families are watching.

I also want to mention some Members who have approached me who would have loved to have been here but cannot be due to other commitments in the House. My hon. Friend the Member for Newcastle upon Tyne East and Wallsend (Mary Glindon) has campaigned on this subject for many years and chaired the all-party parliamentary group. A constituent of my hon. Friend the Member for Basingstoke (Luke Murphy), who has the disease, visited Parliament on Monday and was so pleased to see on the Annunciator that we were having this debate. My hon. Friends the Members for Bury North (Mr Frith) and for Bury South (Christian Wakeford) worked together to ensure that Manchester university NHS foundation trust does now provide the drug to their constituents. William from Codicote, a constituent of my hon. Friend the Member for Stevenage (Kevin Bonavia), is living with Duchenne. The hon. Member for Chester South and Eddisbury (Aphra Brandreth) has been supporting Mr and Mrs Binns, whose son Jack has Duchenne. They do not yet have access to givinostat and are trying to get it. I have also had representations from my hon. Friend the Member for Beckenham and Penge (Liam Conlon), the hon. Member for Westmorland and Lonsdale (Tim Farron) and my hon. Friend the Member for Altrincham and Sale West (Mr Rand).

We can see that there is broad support across all parties in the House, with Members working with their constituents to try to secure this drug which is free of charge—free of charge—to the NHS. We have heard that provision is very patchy across England. There is some central co-ordination in Scotland, but no lad in Northern Ireland can access the treatment.

[Euan Stainbank (Falkirk) (Lab)]

I thank my hon. Friend for securing this debate. It is important to acknowledge quality of life with this drug, but we also have to acknowledge that many people with Duchenne are living with 24/7 care needs, including my constituent, Dylan Phillips, who lives at the excellent care home in Glenbervie. Does my hon. Friend agree that those living with Duchenne in Scotland should be protected as they would be in England under continuing healthcare schemes, rather than having to bear the cost of their social care and living on only £35.90 a week with universal credit and adult disability payment, as they do not qualify for continuing healthcare in Scotland?

[Chris McDonald]

The important thing for us to consider here is that with only 1,100 or 1,200 lads and young men in the country living with the disease, and only 500 boys eligible for the treatment, we could at least expect some consistency in approach across the whole of the United Kingdom.

[Maya Ellis (Ribble Valley) (Lab)]

To build on that point, I recently met the parents of a young man in his 20s who absolutely reinforced the need to get givinostat funded properly across the country. I was also struck by how the lives of both parents—they are teachers—and their other child were deeply affected by having to support their son and brother. Does my hon. Friend support my plea to the Minister to reassure my constituents that adult social care services will continue to support people like them, so that their lives can be enriched?

[Chris McDonald]

It is really important that we remember the parents, families and carers—the big support network around these boys. It seems to be such a small thing that we need to do from the point of view of the NHS.

There are some very good examples: Leicester royal infirmary is leading the way as the first hospital to dose a patient. However, as we have heard, some large specialist children’s hospitals in many areas have been slow to commit, and only a few have actually started dosing patients, although some are still working to make givinostat available. The barriers that we hear about are a lack of capacity and resource constraints. Clinics say that they need small amounts of additional consultant time for pharmacy support and extra blood tests, but really, in the context of the number of blood tests that are carried out in the NHS on a daily basis, this number is really quite small. However, some trusts still insist on telling families that they cannot deliver the treatment because of that. Given that some trusts can and some cannot, I would like to hear from the Minister what we might do to even out the service across the country.

Some trusts have expressed concern that after starting patients on givinostat, the National Institute for Health and Care Excellence might subsequently not approve it at its upcoming meeting in July, and trusts would have to withdraw the treatment. Well, they would not need to do so: Italfarmaco, the previously mentioned pharmacy company, has made it clear that in the event of a negative decision from NICE, it will continue to provide givinostat for those already enrolled on the early-access programme for as long as it is deemed clinically beneficial to the patient. Continuity of supply letters have been signed between hospitals taking part in the early-access programme and the company to ensure that this is in line with NHS England guidance.

There are two reasons now to accelerate the roll-out before NICE’s decision in July. The first is that every day and every week makes a difference to these young lads; the second is that every lad who gets on that programme before July will be guaranteed this treatment for the rest of their lives, if it is not approved by NICE.

When I met Benjamin, Jack and Eli, I had already disappointed Eli by not being able to introduce him to Sam Fender, so I thought I would try to redeem myself. I said to them, “Look, I’ve come to see you, but clearly, when you came to Parliament, you didn’t want to meet the Member for Stockton North. Who would you most like to meet?”. They all said they would like to meet the Secretary of State for Health, not primarily because he could help them with their disease, but apparently they like him—he is a very popular Member of Parliament. I said, “I’ll see if I can sort that out,” and I did manage to sort it out. The Secretary of State very generously gave a lot of his time—I think his private office thought he had vanished off the face of the earth, because he had a great time chatting to Benjamin, Jack and Eli. I know that his intervention really cheered them up, but it also gave them hope for their futures. I want sincerely to thank the Secretary of State for Health for his generosity in sharing his time on that day and for the difference that he made to those boys.

I turn to my requests of the Minister. In the short term, what these families need is for hospitals with specialist neuromuscular services across the whole of the United Kingdom—in England, Wales, Scotland and Northern Ireland—to implement the early-access programme swiftly, and for it to be rolled out to non-ambulant patients, too. The free availability of the drug from the manufacturer means that cost alone is not the barrier here; the barrier is bureaucracy. My simple ask to the Minister is to act with the urgency needed to roll out the medicine across the country as quickly as possible. Every day and every week matters—the lads with Duchenne do not have time to wait.

[The Minister for Secondary Care (Karin Smyth)]

It is a real pleasure to respond to this moving debate. I know that many people with Duchenne muscular dystrophy and their families will have wanted to tune in to hear what was said this afternoon. I thank Members who have contributed in different ways to the debate. In particular, I thank my hon. Friend the Member for Stockton North (Chris McDonald), who secured this debate and advocated so powerfully for these families. He really brought to life the experiences of Benjamin, Jack and Eli, and I commend him for doing so.

I first acknowledge the profound impact that this debilitating disease has on those living with it, and their families, and the urgent need for new and effective treatments. As has been said, my right hon. Friend the Secretary of State for Health and Social Care heard at first hand from people affected by this condition earlier this year, when he attended an event hosted by Duchenne UK. He met many young patients and listened to what they said about the challenges that they face. As we all know, meeting families and individuals from our constituencies leaves a long-lasting effect on us, and it is important that we continue to meet them.

Timely and equitable access to innovative medicines for the treatment of DMD and other rare diseases mentioned today is of the utmost importance. The National Institute for Health and Care Excellence is the independent body responsible for assessing whether new licensed medicines can be recommended for routine use in the NHS, based on a thorough assessment of their clinical effectiveness and cost-effectiveness. Through this process, many thousands of patients, including those with rare diseases, have been able to benefit from effective new treatments at prices that represent value to the NHS. NICE has been able to recommend two medicines for the treatment of DMD: ataluren, recommended in 2023, and vamorolone, which was recommended in January this year and is now available on the NHS to around 1,700 eligible patients, in line with NICE’s recommendations.

As my hon. Friend has said, NICE is appraising givinostat, and the first NICE committee meeting is scheduled for July this year. If the medicine is recommended, the NHS in England will be legally required to fund it. I am aware that a small number of patients in the UK have been receiving treatment with this drug through a company-led early access programme, established by the pharmaceutical company Italfarmaco, as we have heard. It is important to note that participation in these programmes is decided at NHS trust level, and although the drug is free to patients taking part in it and to the NHS, NHS trusts must still cover administration costs and provide clinical resources to deliver the EAP.

NHS England has published guidance on free-of-charge medicine schemes, such as the givinostat EAP, providing advice on financial, administrative and clinical risks. NHS England cannot, however, centrally direct NHS trusts to participate in company sponsored EAPs like this one, or in any other private activity. To issue any form of national direction around participation in EAPs would both pre-empt and undermine the role of NICE, whose purpose is to advise the NHS on whether particular treatments should be made routinely available on the NHS.

Even when there is an agreement that a company will continue to provide a drug free of charge in the event of a negative decision by NICE, participating trusts remain liable to cover the significant costs of delivering that service, including the cost of the clinical resources and staff time needed. That would be outside their funding allocation and in addition to paying for any subsequent NICE-recommended treatments that they would be mandated to fund.

[Chris McDonald]

I thank the Minister for her response, to which I am listening very carefully. I appreciate her point that it would be inappropriate for the Department of Health and Social Care to direct what trusts should do, but what we have heard from the trusts is that they would like to issue this drug, but have certain issues and problems. Perhaps it might simply be a matter of the Department giving help and support, and facilitating information-sharing between trusts that have made this work and those that have not. Perhaps it could be more encouragement than direction.

[Karin Smyth]

I thank my hon. Friend for that constructive suggestion. We need to wait to see how the NICE recommendation goes in July. With this disease and so many others, it is important to share learning and information, and trusts should be encouraged and supported in doing so. We will work with him on that constructive recommendation.

I understand my hon. Friend’s concerns about the fact that non-ambulant patients are not yet able to access givinostat, but it is important to note that the eligibility criteria for participation in the early access programmes have been determined by the pharmaceutical company. NHS trusts that decide to participate in the EAP must only provide treatment in line with the criteria, which state that patients must be ambulant. A clinical trial is being carried out by the pharmaceutical company to evaluate the safety and tolerability of the drug in non-ambulant patients, and to further explore the efficacy of the drug in this population. I know that for the patients and families affected, it will be disappointing to hear that there is no access to the drug for ambulant patients before a NICE decision, or for non-ambulant patients prior to clinical trials being concluded. I want to assure my hon. Friend that we have arrangements in place to support rapid access to new medicines.

Dementia Care

Chris McDonald Excerpts

Tuesday 3rd June 2025 Commons Chamber

[Chris McDonald (Stockton North) (Lab)]

I thought this evening that I might appraise the House of the story of Pat and John Hirst from my constituency. Pat was a nurse. She qualified in 1975 at Leeds general infirmary, and the following year she met John while studying in Liverpool. They married in 1978, raised their three sons and settled in Stockton. Pat returned to work after she had had her children, initially in nursing homes, caring for residents with dementia, then later at the University hospital of North Tees, where she worked for more than a decade.

In the final months of Pat’s time at the hospital, her performance as a nurse began to decline. Unbeknownst to her colleagues or her family, Pat was displaying the early symptoms of frontotemporal dementia, which we heard about earlier from the hon. Member for South Devon (Caroline Voaden). Pat’s colleagues did not realise that, so disciplinary action was initiated. John believes that Pat would have been dismissed, but she instead decided to retire on her 60th birthday, before the end of that year.

In early 2012, Pat experienced swallowing difficulties. She underwent tests across several hospitals, and the diagnosis came. No further explanation was provided, other than a referral to the local memory clinic—an experience of many people with dementia. That evening, John sat at his computer and searched online for more information. There, alone in his own home, he learned that the average life expectancy from diagnosis was between two and 20 years. He had not realised until that point that dementia could be a terminal illness. I think we can all agree that there must be a better way of finding out such devastating news.

Pat remained aware of her surroundings and her loved ones until the very end. In her final two years, she lost the ability to speak and could communicate only with her eyes. John recalls the look of fear in her eyes when it became clear that end of life care was beginning. At that point, she was fully aware that she was saying goodbye to her husband and her sons. Their grandson Henry is now two years old. He will never know his granny, but John is determined that Henry and others of his generation should grow up in a world where dementia can be diagnosed early, managed better and ultimately cured. John now volunteers with Alzheimer’s Research UK, and he recently completed a walk from Teesside to Newcastle to raise awareness and funding. For those not familiar with the area, that is quite a long distance. Even walking, he got there faster than he would have done on the Durham coast line.

In Stockton, we have about 1,300 people suffering from dementia, but it takes six weeks longer for a dementia diagnosis in my constituency than the national average. We clearly need to ensure that people are diagnosed early before symptoms become apparent, but it is also important that we raise awareness with the public and employers that early-onset dementia can and does affect people before retirement age, so that people do not suffer the kind of treatment that Pat did in her last year of employment.

While the impact of dementia is a difficulty for a parent, it adds a new dimension when that person is diagnosed at the age of 30 or 40. We have heard already that if nothing changes, one in two of us will be affected by dementia, whether individually, living as a carer or both. John speaks not only for himself and for Pat, but for the thousands of families across Stockton North and the country who are facing this condition. We owe it to John and to other families to ensure that the experience of dementia is no longer defined by lengthy waits, lack of information and financial hardship or, indeed, improved by people like John walking long distances from Teesside to Newcastle. Instead, it should be defined by early intervention, compassionate care, and meaningful progress through research.

Mental Health Bill [Lords]

Chris McDonald Excerpts

2nd reading
Monday 19th May 2025 Commons Chamber

[Chris McDonald (Stockton North) (Lab)]

I echo the remarks of previous speakers; it has been a privilege to listen to the depth of personal and professional expertise expressed in this debate. I do not share that expertise, as I think will become abundantly obvious in a short moment.

What do you get if you put a group of men in a room and ask them to talk about mental health? Half of them leave, and the other half run into the corners of the room. I do not know whether that rings true for the men in your life, Madam Deputy Speaker, but when I heard that, it reminded me of myself. I heard it from a chap called Graham in Norton in my constituency, rather than from Graham Norton. Graham has set up a men’s shed in Norton, which is a national scheme. It is a remarkable place where men can come together and talk about mental health, but they do so by engaging in other activities.

For those who have not been to one, a men’s shed is just like your shed—it has all the great things your shed has—but your mates are there as well. In the men’s shed in Norton, you can make model boats, or make things using the 3D printer, and it has the most amazing workshop, which includes a fantastic pillar drill. It made me think that I need a pillar drill for my workshop, to help my mental health. I met many men there; some were bereaved, some were suffering from serious or terminal illnesses, and others were feeling lonely. They gave me plenty of tea, and we had a really good chat—a really positive and uplifting chat—and there was a great deal of mickey-taking as well, which you always find when you get a group of men together.

That sort of facility is incredibly important for all the reasons we have heard about in discussions about men’s mental health. Not least among those, as we have heard a number of times this evening, is the fact that for men of my age, suicide is the most prevalent reason for death. We heard that from my hon. Friends the Members for Darlington (Lola McEvoy) and for Whitehaven and Workington (Josh MacAlister). In my constituency of Stockton North, men wait more than three months over the national average for treatment for mental health conditions—as do women; in fact, everyone does. Some form of talking therapy would really help with many conditions, which is why I want to take a moment to talk a bit about psychotherapy.

[Melanie Ward (Cowdenbeath and Kirkcaldy) (Lab)]

My hon. Friend mentioned men’s sheds. I was delighted to visit the Kirkcaldy men’s shed in my constituency recently to see the amazing work that the people there do. Listening to this debate, I have been struck by the positive changes that this Bill will bring, and by the contrast with Scotland. The people I speak to from almost every local service raise the issue of the mental health crisis across Fife, be they from the NHS, charities or the police. NHS Fife has asked for funding from the Scottish Government to sort out our mental health crisis and was told to not even ask. That is such a contrast with where we are in this place, and I am sure my hon. Friend agrees that action needs to be taken in Scotland and in Fife.

[Chris McDonald]

I absolutely agree with my hon. Friend. It will not be very long before voters in Scotland have the opportunity to contrast the Scottish Government with what a Labour Government deliver, and hopefully they will chose the latter.

I mentioned psychotherapy. For a profession that has been around since the time of Freud, it is remarkably unregulated; there is no professional register, no form of legally enforceable complaint, and no way to ensure that someone found guilty of misconduct is stopped from practising. In fact, anyone can call themselves a therapist. In 2007, the previous Labour Government considered some form of regulation for therapists, and I encourage the Government to include such regulation in the Bill; it would be the ideal place for it. Since 2007, there has been a strong increase in private practice, and in legal cases arising from issues to do with psychotherapy. Of course, there are also online influencers. Professor Dame Til Wykes—an expert in this area—described them as “selling snake oil”. As my hon. Friend the Member for Southampton Itchen (Darren Paffey) mentioned, that is another reason why we need stronger safeguards and regulation of social media for children.

Essentially, an unqualified psychotherapist could do harm, but the issue is more likely to be the missed opportunity to do good—perhaps a failure to diagnose a more serious condition or, frankly, a missed chance to save somebody’s life. Regulation is supported by the profession. Chloe, a professional, urged me to raise this issue with the Secretary of State; I am doing that now, as he is in his place. This is an opportunity to restore confidence in the profession, and for us all to pick up where the last Labour Government left off.

As I say, half the men in a room will run out of it when mental health is mentioned. What is the answer to that? Graham gave me the answer: “Put a broken lawnmower in the middle of the floor. A big conversation will ensue, and two hours later, all the men will know each other’s names, and the names of each other’s families. They’ll have talked about how they are feeling and whether they are doing okay. You probably will not have a repaired lawnmower, but you will have lots of suggestions.” There is a good reason for that: men generally are not good speaking face to face, but they can speak shoulder to shoulder.

Access to Dentistry: Somerset

Chris McDonald Excerpts

Tuesday 1st April 2025 Westminster Hall

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship again this morning, Mr Stuart. I thank the hon. Member for Frome and East Somerset (Anna Sabine) for securing this important debate on access to dentistry in Somerset.

We know that there are challenges in accessing NHS dentistry across the country, with some areas facing acute challenges. Put simply, too many people are struggling to find an NHS appointment. In the two years up to June 2024, just 31% of adults were seen by an NHS dentist in Somerset’s integrated care board, which covers the hon. Lady’s constituency, compared with 40% across England. In the year to June 2024, only 42% of children in Somerset ICB were seen by an NHS dentist, compared with 56% across England. The fact that the number of adults and children in Somerset ICB accessing an NHS dentist is even lower than the already struggling rate across England is concerning.

Somerset is facing significant workforce pressures, and there are not enough NHS dentists available to do the job. As of March 2024, there were 334 vacancies in the south-west for full-time equivalent NHS general dentists. The 29% vacancy rate is the highest of any English region.

It is a shocking fact that the No. 1 reason for children aged five to nine being admitted to hospital in our country is to have their teeth removed, with a primary diagnosis of tooth decay. It is a truly Dickensian state of affairs.

[Chris McDonald (Stockton North) (Lab)]

We have heard about the dental desert in Somerset. Stockton in my constituency has also been branded a dental desert. I welcome the 4,000 new appointments that the Government have granted for Stockton North and the surrounding area. However, given the urgency that he has described, particularly for children’s health, I ask the Minister whether the Government are taking any measures to accelerate the roll-out of those appointments.

[Stephen Kinnock]

We will absolutely ensure that integrated care boards are delivering to the target they have been set. If we see any evidence of slowing down or backsliding, we will certainly intervene to ensure that appointments are accelerated. I would also be more than happy to receive representations from my hon. Friend if he feels that performance in his ICB is not delivering.

The state of NHS dentistry in Somerset, and the nation as a whole, is simply unacceptable and it has to change.

Rare Cancers Bill

Chris McDonald Excerpts

2nd reading
Friday 14th March 2025 Commons Chamber

[Chris McDonald (Stockton North) (Lab)]

Those of us who have lost a friend or a family member to cancer will no doubt have heard them described—often, I think, somewhat unhelpfully—as courageous, but this morning we witnessed the most courageous exposition I have ever heard in my life from my hon. Friend the Member for Calder Valley (Josh Fenton-Glynn). I thank him for the privilege of allowing us to listen to his loving tribute to his brother. We also heard from a number of Members, including the hon. Members for Kingswinford and South Staffordshire (Mike Wood), and for Witney (Charlie Maynard), and, most forcefully, my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh), about the pressure of time, and the urgent need to do something to find a cure or treatment for rare cancers. We have heard a number of moving speeches this morning, but I will allow hon. Members to relax and recharge their emotional batteries a little bit, because I will address the issue of time, and the practical considerations of how we can turn drug discovery into treatment as speedily as possible. To do that, I will lift the lid on our drug supply chain and set out the vital role that the NHS can play in it.

There are lessons we can learn from the covid pandemic when it comes to the drug supply chain. We very quickly developed a vaccine in the UK, in Oxford, but we saw quite quickly that the vaccine was worth nothing until it was in the arms of the population. Getting that done required a big effort, including in industry. As we heard from my hon. Friend the Member for Gravesham (Dr Sullivan), industry is also important. The Fujifilm factory in Billingham in my constituency manufactured one of the covid vaccines, and it will shortly turn Billingham into the largest biopharmaceutical manufacturing centre in the UK. When it was making the vaccine, it found that it had a big problem. This brings into play another town, just up the River Tees from Billingham, in the constituency of my hon. Friend the Member for Bishop Auckland (Sam Rushworth). Members may have heard of it—it became famous for a particular reason during the pandemic—but they may not be sighted on the reason why I will talk about it, which has more to do with glass than glasses. Barnard Castle is home to GlaxoSmithKline, which bottled the vaccines. There was, at the time, a global shortage of bottles for vaccines, and in the UK we have only one glass manufacturer capable of doing that job, although soon there will be another in St Helens.

Hopefully, after that little overview, Members can sense that there is a big industrial supply chain issue that we need to address before we can get treatments to the people who need them most. In fact, there are a number of researchers working on this area. I am sure that when we think of research into rare cancers, we think of people in white coats and laboratories in places like Oxford, Cambridge and Imperial, but I urge us to also think about the process operators in Billingham, the bottle fillers in Barnard Castle and the furnace operators in places like Glass Futures in St Helens, who are also working hard on research projects to deliver those treatments.

The second issue that I would like us to consider is the role that the NHS can and must play. I want to see a transformatively different approach from the NHS in this area. A month ago in Parliament, I met representatives of Pancreatic Cancer UK, which I know supports the Bill. They talked to me about pancreatic enzyme replacement therapy, which is a treatment for pancreatic cancer, and about the difficulties in sourcing sufficient quantities of treatment. We all know from our constituency surgeries that there is the same issue with common drugs; people suffering with other conditions and people who have children with attention deficit hyperactivity disorder and so on are struggling to get the drugs that they need.

Part of the issue is that we rely so much on imports. We could be manufacturing these products in the UK. The NHS is the single biggest purchaser of drugs in the world; it has the market power to demand that production be centred in the UK. That would bring clear economic benefits to the UK, but it would also shorten cycle times for innovation, because the researchers and the manufacturers would be close to one another, and it would ensure security of supply in the UK. It would mean that we could be proud of manufacturing drugs that help to treat people around the world. It would also fit in with our industrial strategy. My right hon. Friend the Secretary of State for Health and Social Care was talking only yesterday about the importance of life sciences to our industrial strategy, and about their creating British jobs in research and in factories.

I very much thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for introducing the Bill. He described his father-in-law as a dignified man; my hon. Friend gave an incredibly dignified speech, and I am sure that his father-in-law will be very proud. We look forward to the days when people who suffer from rare cancers are not offered such treatments as breathing into a brown paper bag, as my hon. Friend described, or taking a paracetamol, as my hon. Friend the Member for South Shields (Mrs Lewell-Buck) described. Instead, we should use the power of our NHS and the efficiency of our UK supply chains to turn discoveries into drugs, and trials into lifesaving treatments.

Oral Answers to Questions

Chris McDonald Excerpts

Tuesday 15th October 2024 Commons Chamber

[Stephen Kinnock]

The hon. Gentleman has considerable expertise in this area, given his background. I would be happy to discuss that issue with him, but I remind him that although there may well be specific issues, there is a generic problem: the total and utter failure to ensure investment, reform and strategic thinking about our system.

[Chris McDonald (Stockton North) (Lab)]

T1. If he will make a statement on his departmental responsibilities.

[The Secretary of State for Health and Social Care (Wes Streeting)]

Today, I am publishing the full findings of Dr Penny Dash’s review of the Care Quality Commission. Her interim report made it clear that the CQC was not fit for purpose, with fewer inspections being carried out, urgent follow-ups being neglected and patient safety being put at risk. Today, she makes seven recommendations for improvement, and I have made sure that the CQC has begun urgently putting them into practice. We are also publishing a review of the CQC’s deeply flawed single assessment framework today. Sir Julian Hartley will shortly begin as its new chief executive, with my full support.

[Chris McDonald]

My constituent Mark has been unable to find an NHS dentist for his 19-month-old child, even at the seventh time of trying. My right hon. Friend well understands the crisis he has inherited. Will he meet me to discuss the shortage of dentistry in Stockton North and across Teesside?

[Wes Streeting]

I am sorry for my hon. Friend’s constituents, and so many others who are dealing with the consequences of the Conservatives’ failure on dentistry. I would be delighted to meet him to discuss the challenges in his area.